Phase 1 clinical trial of single agent PV-10 for the treatment of symptomatic neuroendocrine tumors (NET) metastatic to the liver

An interesting trial from Provectus Biopharmaceuticals Inc.  Phase 1 results were presented at the American Society of Clinical Oncology (ASCO) 2019 Annual Meeting, held in Chicago, IL from May 31-June 4, 2019

In an ogoing Phase 1 clinical trial of single agent PV-10 for the treatment of symptomatic neuroendocrine tumors (NET) metastatic to the liver. Intralesional injection of oncolytic immunotherapy PV-10 can yield immunogenic cell death in solid tumor cancers that results in tumor-specific reactivity in circulating T cells. PV-10 clinical development includes cutaneous melanoma, hepatocellular carcinoma, and metastatic liver cancers such as uveal melanoma in single-agent and combination therapy settings.

What is PV-10?

Described above as “Oncolytic Immunotherapy” but elsewhere as “Ablative Immunotherapy”, the latter indicates the method of administering the therapy i.e. tumour ablation.  It’s more well known for trials in treating Melanoma where tumour ablation (albeit subcutaneous) is more common as a treatment.

Scientific Description: PV-10 causes acute oncolytic destruction of injected tumors, releasing damage associated molecular pattern molecules (DAMPs) and tumor antigens that initiate an immunologic cascade where local response by the innate immune system facilitates systemic anti-tumor immunity by the adaptive immune system. The DAMP release-mediated adaptive immune response activates lymphocytes, including CD8+ T cells, CD4+ T cells, and NKT cells, based on clinical and preclinical experience in multiple tumor types. T cell function can be further augmented by combining PV-10 with immune checkpoint inhibition.  Sometimes it’s known as its short name “Rose Bengal“.

What is ‘Rose Bengal’?

It’s actually a 135 year old chemical stain, originally discovered in 1882, and for more than half a century used as a dye in cancer diagnosis.

Rose Bengal, in a 10% solution known as PV-10, has displayed greatest promise in the treatment of melanoma, where it was shown in an 80-patient Phase II trial to achieve a complete response rate in 50% of patients’ tumours and an overall response in 71%. A bystander effect was also seen in untreated lesions, suggesting a positive immune response, although it was more effective when all lesions were injected with PV-10.

Scientific Description: PV-10’s active pharmaceutical ingredient is rose bengal disodium (RB) (4,5,6,7-tetrachloro-2’,4’,5’,7’-tetraiodofluorescein disodium salt), a small molecule halogenated xanthene. PV-10 drug product is a bright rose red solution containing 10% w/v RB in 0.9% saline for injection, which is supplied in single-use glass vials containing 5 mL (to deliver) of solution and administered without dilution to solid tumors via intratumoral injection.

What is the trial doing and where is the trial located?

This single-center Phase 1 study is being conducted at The Queen Elizabeth Hospital in Adelaide, Australia to evaluate the potential safety, tolerability, and preliminary efficacy of PV-10 in metastatic NET patients (NCT02693067). The primary endpoint for the trial is safety, and secondary endpoints include objective response rate (ORR) of injected target and measurable bystander lesions, target lesion somatostatin receptor expression, and biochemical response. Six patients in the first cohort each received one percutaneously-administered injection of PV-10 to one target lesion per treatment cycle. Patients in the second cohort can receive PV-10 injection of multiple lesions per cycle (2 of 6 patients in the second cohort have received at least one cycle of PV-10 thus far).

Results of Cohort 1 as follows:

Cohort 1 has fully enrolled, with 4 of 6 subjects male, median age 65yrs, range 47-72. Primary sites were: small bowel 3, pancreas 2, caecal 1; grade: Gd1 = 5, Gd2 = 1. All patients received prior Somatostatin Analogues (SSA) and PRRT. Median CgA was 645 (range 30-2819). To date 1 subject has received 4 PV-10 treatment cycles, 1 has received 2 cycles, and 4 have received a single cycle. Toxicity has been acceptable, including pain post procedure, carcinoid flare and nausea. LFT’s have remained stable. Overall QOL score was stable for 5 of 6 subjects. ORR in injected lesions is 50% (progression in 1 subject), with overall disease control of 84%. CgA response: 5 stable, 1 progression. One subject with “carcinoid pellagra” had rash resolution. Response follow-up is ongoing and additional efficacy and functional data will be presented. Hepatic IL PV-10 elicited no safety concerns with encouraging evidence of both local and systemic disease control. Enrolment to Cohort 2 is underway

Further reading:

The NET Clinical Trial document: click here

The ASCO poster for the NET trial: click here

ASCO trial update: click here

Thanks for listening

 

New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

see citation below

New radiotracer can identify nearly 30 types of cancer (including NETs). Future potential for therapeutic application. This is a different type of radiotracer being currently being used in the approved market for NETs.  It’s availability and timeline is not yet known.

Date: June 7, 2019

Source: Society of Nuclear Medicine and Molecular Imaging

Summary: A novel class of radiopharmaceuticals has proven effective in non-invasively identifying nearly 30 types of malignant tumors. Using 68Ga-FAPI PET/CT, researchers were able to image the tumors with very high uptake and image contrast, paving the way for new applications in tumor characterization, staging and therapy.

Red more here. https://www.snmmi.org/NewsPublications/NewsDetail.aspx?ItemNumber=31744

Watch this space for more data on availability timeline and what type of NETs were used in the trial will follow.

To learn more about the currently approved Ga68 PET scans, check out these articles

Gallium 68 PET Scans – Into the Unknown

Neuroendocrine Cancer: Ga68 PET Scan – a game changer? 

If you can see it, you can normally detect it

Theranostics for Neuroendocrine Cancer – a find and destroy mission

Citation for graphic:

FIGURE: 68Ga-FAPI PET/CT in patients reflecting 15 different tumor entities. Maximum-intensity projections of 68Ga-FAPI PET/CT in patients reflecting 15 different histologically proven tumor entities (sorted by uptake in descending order). Ca = cancer; CCC = cholangiocellular carcinoma; CUP = carcinoma of unknown primary; MTC = medullary thyroid cancer; NET = neuroendocrine tumor.

The authors of “68Ga-FAPI PET/CT: Tracer Uptake in 28 Different Kinds of Cancer” include Clemens Kratochwil, Thomas Lindner, Labidi Abderrahim, Walter Mier, Hendrik Rathke, Manuel Röhrich and Frederik L. Giesel, Department of Nuclear Medicine, University Hospital Heidelberg, Heidelberg, Germany; Paul Flechsig, Department of Nuclear Medicine, University Hospital Heidelberg, Heidelberg, Germany, and Translational Lung Research Center Heidelberg, German Center for Lung Research, Heidelberg, Germany; Annette Altmann, Department of Nuclear Medicine, University Hospital Heidelberg, Heidelberg, Germany, and Clinical Cooperation Unit Nuclear Medicine, German Cancer Research Center, Heidelberg, Germany; Sebastian Adeberg, Department of Radiation Oncology, University Hospital Heidelberg, Heidelberg, Germany, and Heidelberg Institute for Radiation Oncology, Heidelberg, Germany; Hauke Winter, Translational Lung Research Center Heidelberg, German Center for Lung Research, Heidelberg, Germany, and Department of Surgery, Thoraxklinik at University Hospital Heidelberg, Heidelberg, Germany; Peter K. Plinkert, Department of Otorhinolaryngology, Head and Neck Surgery, University Hospital Heidelberg, Heidelberg, Germany; Frederik Marme, Department of Obstetrics and Gynecology, University Hospital Heidelberg, Heidelberg, Germany, and Department of Obstetrics and Gynecology, University Hospital Mannheim, Mannheim, Germany; Matthias Lang, Department of Surgery, University Hospital Heidelberg, Heidelberg, Germany; Hans Ulrich Kauczor, Translational Lung Research Center Heidelberg, German Center for Lung Research, Heidelberg, Germany, and Department of Diagnostic and Interventional Radiology, University Hospital Heidelberg, Heidelberg, Germany; Dirk Jäger, Department of Medical Oncology and Internal Medicine VI, National Center for Tumor Diseases, University Hospital Heidelberg, Heidelberg, Germany, and Clinical Cooperation Unit Applied Tumor Immunity, German Cancer Research Center, Heidelberg, Germany; Jürgen Debus, Department of Radiation Oncology, University Hospital Heidelberg, Heidelberg, Germany, Heidelberg Institute for Radiation Oncology, Heidelberg, Germany, and Clinical Cooperation Unit Radiation Oncology, German Cancer Research Center, Heidelberg, Germany; and Uwe Haberkorn, Department of Nuclear Medicine, University Hospital Heidelberg, Heidelberg, Germany, Translational Lung Research Center Heidelberg, German Center for Lung Research, Heidelberg, Germany, and Clinical Cooperation Unit Nuclear Medicine, German Cancer Research Center, Heidelberg, Germany.

About the Society of Nuclear Medicine and Molecular Imaging

The Society of Nuclear Medicine and Molecular Imaging (SNMMI) is an international scientific and medical organization dedicated to advancing nuclear medicine and molecular imaging, vital elements of precision medicine that allow diagnosis and treatment to be tailored to individual patients in order to achieve the best possible outcomes.

SNMMI’s more than 17,000 members set the standard for molecular imaging and nuclear medicine practice by creating guidelines, sharing information through journals and meetings, and leading advocacy on key issues that affect molecular imaging and therapy research and practice. For more information, visit www.snmmi.org.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included
This is a Patients Included Site

PLEASE CONSIDER SHARING THIS POST – YOU MAY SAVE SOMEONE’S LIFE

 

 

 

Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

I was never diagnosed with Irritable Bowel Syndrome (IBS) but sometimes I feel like I now have it.  I know many others feel the same way.  But when I look at the alternatives, I can’t help thinking it’s a small price to pay given that one of them might be a slow degrading quality of life until shuffling off  this mortal coil. If I had the choice again, I would still take the surgery.

Before the article continues, let me be clear – I’m not suggesting this is a potential treatment for NET patients with post abdominal surgery side effects or side effects of any other treatment, nor am I suggesting it’s a potential treatment for those with carcinoid syndrome diarrhea.  I publish it because there is a connection to serotonin and it may be a useful read for the more curious amongst us. In fact, since publishing I’ve been contacted by several people telling me they are aware of the drug having been treated with it for nausea.

I once wrote about IBS in an article entitled “Were you irritated by your misdiagnosis” (click the link to read).  This was written after I completed an online IBS course.  I wrote the article in a balanced way in an effort to explain why many patients are misdiagnosed with IBS in the lead up to the correct diagnosis some time later.  This is an issue with other conditions, not just NETs.  It was also designed to capture IBS readers and offer them a chance to review their diagnosis to ensure there wasn’t anything else they might try to double-check (markers and scans mainly).

A new drug on trial for IBS

Given the connection between NETs and IBS, I was really interested to see this in a UK national newspaper and I subsequently researched for some formal papers to back up the headline.  What I found most interesting was the suggestion that a drug designed to inhibit serotonin was involved (…… but read on rather than get too excited).

Diarrhea – the IBS and NET Effect

Diarrhea is a big feature of IBS although there are several types including diarrhea mainly, constipation mainly and a mixed of both – you can read more in my IBS article linked above.   Diarrhea is also a big feature of several of the NET Syndromes, in particular Carcinoid Syndrome.  It is known that the cause of carcinoid syndrome diarrhea is the oversecretion of serotonin.  This makes is quite distinct from other reasons for diarrhea, including but not limited to side effects of intestinal surgery (as one example).

Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

What is ‘ondansetron’. It’s actually a powerful anti-sickness drug given to cancer patients and some of you may recognise it as ZOFRON.  Interestingly it’s a serotonin receptor (5-HT3) antagonist (5HT3-RA) for antineoplastic chemotherapy-induced nausea and vomiting. Ondansetron is a drug which blocks the 5-HT receptor, which is used to treat nausea and sickness, and has an excellent safety record.  Other 5HT3-RAs include Tropisetron, Granisetron, Dolasetron, Palonosetron, Ramosetron (the group of drugs in the class known as 5HT3-RAs are known a ‘setrons’).

It is being offered to those with irritable bowel syndrome (IBS), helping to ease the most embarrassing and painful symptoms of the condition.  According to the Daily Mail, if the trial is successful, it could throw open the doors to the first targeted treatment for the millions of IBS patients with bloating, abdominal discomfort and urgent bowel movements. Two people on the trial are featured in the newspaper article reporting good outcomes.

Information on the Trial.  Researchers are hoping to recruit 400 volunteers in the UK aged over 18 who have IBS to take part in the 12-week study.  You can read more about the trial in the reference documents below.

Read more here:

1. The Daily Mail article. Click here.
2. Trial Sponsor site.  Click here.
3. Clincial Trial Document.  Click here.

Would this work for carcinoid syndrome diarrhea?

I guess many of you will now be thinking that but I advise not to get too excited as things are never that straightforward.  However, if I was a pharmaceutical involved in NET research, I would certainly be watching this trial carefully.  None of us know the interaction between NETs, NET treatments and titrated ondansetron and its mechanism of action. It may be more directed at brain and central nervous serotonin rather than gut serotonin which is mainly the issue with carcinoid syndrome diarrhea, i.e. it may not work in the same way and/or have the same effect as other approved NET drugs such as somatostatin analogues (Octreotide/Lanreotide) and tryptophan 5-hydroxylase (TPH) inhibitors such as XERMELO.

Still, it’s an exciting trial.

I will keep this article live for any developments.  Finally please note this is not in any way medical advice and not a recommendation to try these drugs to control your diarrhea.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

I’m not sick, I just have cancer


im not sick^J I just have cancer

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right?

When I was diagnosed, I really didn’t feel unwell, not enough to consider myself a ‘sick person’. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight, some of these issues might have been connected to my cancer but that’s the nature of medicine sometimes. I try not to reflect too much on what might have been.

Even after diagnosis of advanced and incurable cancer, I still didn’t feel unwell and continued to work and go on holiday. Chris and I jetted off eight weeks after the diagnosis, there was a nice gap right in between starting daily octreotide and a liver embolisation. OK the subsequent procedures and surgeries I had were tough and I guess if you looked at me lying in a hospital bed with a dozen pipes going in and out of my body, you would quite rightly assume I was a sick person. But as I said above, it’s only ever been a temporary label because when I was stronger, I went back to work, continued going on holiday and continued going about my life in a relatively normal fashion. I’m not special or unique as millions of cancer patients do something similar. Sure, I made changes, but sick or not, don’t we all make adjustments to suit changes in circumstance?

Despite the furore that erupts in reaction to the ubiquitous invisible illness clichés we see, I don’t really mind ‘looking well’, I mean who wants to look unwell? I’m very happy to look well, and very happy to feel well. I’m not seeking pity or victim status by demanding people to say that I have to look unwell simply because I have cancer. While we’re on the subject of labels, I have cancer but please don’t call me a ‘sufferer’ – I’m far from being a sufferer, an old-fashioned term for those with illness and I’m thankful to see less use of the term today.

I can’t undo my diagnosis of advanced and incurable cancer and I refuse to retreat into a corner feeling sorry for myself. After all, I’m not a sick person just because I have cancer, I can still get on with living my life.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

Neuroendocrine Cancer: No one gets it until they get it


Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community.  Some ‘get it’ but many don’t.  Most understand ‘Cancer’, they have real difficultly understanding ‘Neuroendocrine‘.  Despite how hard I try, I can see that some of them just don’t get it!

One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It’s a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description, in addition to creating a disadvantage of awareness opportunities because of the use of incorrect cancer types, clearly many doctors and media organisations don’t ‘get it’ either!

Add in the symptoms caused by Neuroendocrine Tumours and their associated ‘Syndromes‘ and ‘Hormones‘, the external audience is now falling asleep or lost interest. Trying to explain why these diseases cannot be diagnosed earlier is also very complex.  “How can it be so difficult” many of them ask.

If you have managed to keep their interest and get onto the subject of living with the disease, it gets even more mind-blowing.  Non-stop surveillance, lifetime surveillance, permanent side effects of treatment. “No way” many of them remark.  The problem is that many people have a really simple outlook on cancer; something goes wrong, you get diagnosed, you get treated, you either die or live.  Simple isn’t it?

One group that normally ‘gets it’ is those who have currently got it, i.e. Neuroendocrine Cancer patients and their close families and supporters.    They may not ‘get it’ before someone is diagnosed and they may still not ‘get it’ once someone is diagnosed, but they eventually will ‘get it’. I have many people who ‘get it’ in my private group and on my main campaign sites.

Despite the difficulties, I’ll continue talking to those who have not yet ‘got it’ hoping to make them understand the disease.  I also intend to continue to help with the undiagnosed (some of these guys probably do ‘get it’ but just not yet formally ‘got it’).  I also want to help those at and beyond diagnosis who despite having it, don’t yet quite ‘get it’.

No one gets it until they get it. It shouldn’t be that way. 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


patients included
This is a Patients Included Site

PLEASE CONSIDER SHARING THIS POST – YOU MAY SAVE SOMEONE’S LIFE

“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story


Judy Golz is a retired registered nurse — she’s also a neuroendocrine cancer survivor.  Like many nurses who get cancer, their experience in working in the healthcare industry possibly helps get a quicker diagnosis, possibly because they can recognise symptoms and likely differential diagnoses and it possibly helps knowing how the healthcare system works.

But with uncommon and complex diseases, it’s not always that straightforward, even for a nurse or any other healthcare professional.  But Judy makes an excellent point about the quantity and quality of medical information now out there, including for Neuroendocrine Cancer and suggested she would be in a better place for self-diagnosis today.

Two things spring to mind about this story. Neuroendocrine Cancer is such a complex disease, it can often be hard for healthcare professionals to diagnose themselves.  Secondly, since my diagnosis in 2010, there is no doubt a lot more information out there and I’d like to think I’ve played my part in that.

Watch her video by clicking here.

Great job Judy Golz and SurvivorNet.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included
This is a Patients Included Site

PLEASE CONSIDER SHARING THIS POST – YOU MAY SAVE SOMEONE’S LIFE

Letter from America

letter from america envelope

I’ve always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving ‘paper’ mail.  Other than birthday cards, I personally don’t tend to see many handwritten letters nowadays. In today’s internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA.

Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled “Letter from America”.  This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through the BBC World Service. Throughout its history, it was presented by Alistair Cooke, who would speak of a topical issue in the US, tying together different strands of observation and anecdote and often ending on a humorous or poignant note. The series ran from 24 March 1946 to 20 February 2004, making it the longest-running speech radio programme hosted by one individual in history! The BBC has archived many episodes on their website and you can actually now listen to these – click here if you fancy a trip back in time.  For me, the memories of the programme were around the deep bond of friendship and shared values that the two great countries share, thus why the radio programme was so special and so relevant to listeners this side of the pond.

Some of you possibly thought about the Scottish duo composed of twin brothers Charlie and Craig Reid – ‘The Proclaimers’. I guess many people in North America and the Southern Hemisphere will be aware of this group who are probably more famous for their anthem song ‘I’m gonna be (500 miles)’ but their song ‘Letter from America’ was actually their most successful.   I have a theory that when people from America tell me they like my quaint British accent, what they actually mean is my Scottish ‘twang’, just like ‘The Proclaimers’ who were born and raised not far from my home town of Dundee.  Their singing style is with a Scottish ‘twang’ – always worth a listen (click here).

Anyway, back to the actual letter.   The person who sent me the letter placed their name and address on the front of the envelope but it was not a name I recognised.  However, he left a clue inside indicating a mutual connection (WEGO Health).  What a boost this letter gave me!

It should also be a boost for all those who read my stuff and follow me on social media because ‘Josh’ is not a Neuroendocrine Cancer patient but he made some really awesome comments which I wanted to share with you. I also wanted you to know first hand that others are being made aware of Neuroendocrine Cancer and our fight for more awareness.

In case you can’t read the handwritten words or wanted to translate, I’ve extracted below:

“Dear Ronny, I just wanted to send a quick “Hello” and “thank you” for everything you do. I’ve become familiar with your advocacy work over the past couple of years and it is hard to find the quality of content and mix of science, lifestyle and hope that you consistently show the world.  It is refreshing and inspiring to say the least. I hope you realize the positive impact you have on real people.  Thank you again and I look forward to your future work.  Sincerely……… Josh”

Letter from America

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news. Please also support my other site – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Please Share this post

Q-Sphera™ – Next Generation Somatostatin Analogue delivery system?

 

In my article listing the somatostatin analogues and their drug delivery systems pipeline (click here), there has been a very interesting development in a product called Q-Sphera (was previously known as Q-Octreotide).  In a press release, it was announced that an unnamed ‘pharma giant’ has signed a deal with Midatech Pharma Plc that will see it evaluate the latter’s Q-Sphera drug delivery platform.  Later in Feb 2019, the pharma was identified as China Medical System Holdings Limited (based out of Hong Kong).  Adding to the excitement behind this development, it was announced in Mar 2019 that the Spanish Government had conditionally approved a €6.6m loan that will be used to help commercialise this flagship drug.

Midatech’s Q-Sphera™ is an advanced microencapsulation and polymer-depot sustained release (SR) drug delivery platform produced using a novel and disruptive printing based process, with numerous and distinct advantages over conventional reactor based technologies. From a manufacturing perspective Q-Sphera™ is a precise, scalable, efficient, and environmentally friendly microparticle platform. From a clinical perspective Q-Sphera™ ensures monodispersed microparticles that release active drug compounds into the body in a superior linear tightly controlled and predictable manner over an extended period of time from 1 – 6 months.  An injection lasting 6 months sounds very exciting but I have no more detail on the feasibility or likelihood of such a change in frequency with Octreotide or Lanreotide but the press release does mention the possibility, i.e. “Q-Sphera allows drug compounds to be released into the body in a “highly controlled manner” over a prolonged period of time; potentially from a few days to up to six months.”

What’s the main differences?

The current trials are based on the use of Sandostatin LAR (Octreotide) using the Q-Sphera delivery system (previously known as Q-Octreotide). The key aspects of usability are reconstitution and needle size but there is also an inference that less frequent injections could be possible.   A comparison of the trial output is as follows:

  • Reconstitution: For Sandostatin LAR (SLAR)™ the procedure to prepare the product for injection is a complex 30 step error prone process, taking up to 40 minutes and, once reconstituted, the product has to be given immediately to prevent solidifying and wastage of the injection. For MTD201™ Q-Octreotide the preparation process is a simple 5 – 7 minute procedure, after which the product is stable up to 2 hours. For the nurse preparing and giving the injection, the short and flexible process of MTD201™ has clear advantages over the all consuming SLAR process™.
  • Needle size: For SLAR, a large 19G needle is prescribed for the injection to prevent blockage, and often an even large 18G needle is required for successful injection. For MTD201 Q-Octreotide the precision microencapsulation technology means that a much smaller 21G needle can be used, and there are no blockages. Other Q-Sphera products use even finer needles as small as 27G. The importance of this is evident from the first-in-human phase I data where MTD201 had lower injection pain – 8% for MTD201 versus 25% for SLAR™, and much lower injection site
    tenderness – 8% for MTD201 versus 83% for SLAR.

This is an exciting development and I will keep this article live with further information as I receive it.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

Please Share this post

Neuroendocrine Cancer: a needle in a haystack


needle in a haystack

It’s no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. It’s also no secret that certain cancers are difficult to diagnose (NETs is one) and there are a number of reasons why this happens, including but not limited to: – they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.

I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established – this drives the best treatment regime. Secondly in finding all the tumours, as this establishes the correct and most detailed staging declaration – this drives treatment plans and surveillance regimes that need to be put into place.

Hunting Tumours – Primary vs Secondary

It’s really important to determine which tumours are primary and which are secondary (metastasis). There’s a number of ways to help work this out and knowledge of NETs epidemiology studies can help.

Specialist Knowledge – certain things are known about the behaviour of NETs

Specialists and in particular NET specialists will be aware of the vagaries of NETs in terms of what tumours are normally a primary and which are normally secondary and many of the pitfalls involved in working that out. Many NETs will have metastasized to the liver at diagnosis, so whilst it is not impossible to have a primary liver NET, the vast majority of liver tumours found will be secondary (metastases). NET Specialists are more likely to have the experience than generalists. They know that the varying metastatic potential depending on the primary site clearly indicates differing biology and genetics across sites and they know that NETs are indeed a heterogeneous group of tumours. The differences cannot be explained by whether the NET is situated in the foregut, midgut, or hindgut. For example, Appendiceal NET is known to be less prone to metastasis. This may be due to the high rate of incidental findings during appendectomies, or because the appendix is an immunological organ where malignant cells can therefore be expected to be frequently recognized by the immune system.

The majority of the digestive tract is drained by the portal venous system, explaining the dominance of liver metastases in this group of tumours. This also explains our finding that many nervous system and bone metastases originate from NETs in the lungs. Disseminated tumour cells may directly reach the systemic circulation from the lungs, whereas if originating from the midgut region, they need to first pass both the liver and the lungs.

As an example of this heuristic knowledge, one Swedish study indicated that two-thirds of peritoneal metastases will be attributed to Small Intestine NETs (SI NETs). SI NETs and Pancreatic NETs (pNETs) are the most likely to metastasize. The least likely sites to metastasize are the Appendix and Rectum. The same study indicated that in addition to the common metastatic locations of lymph nodes and liver, Lung NETs are more likely to metastasize to the brain and bone than other types. I believe the findings from this study more or less correlates to other information I’ve had access to and also confirms the technical behaviour paragraph above.

Multiple Primary Tumours

With NETs there are two scenarios:

1. Multiple primaries in same organ/location (multicentric). This is fairly common in small intestine (SI NETs), stomach/gastric NETs (gNETs), and also found in Lung and pNETs too. NET experts will be aware of the issue and know to look for the possibility. This is an important point with SI NETs as it’s quite long although held together by the mesentery, so a ‘Mark 1 eyeball’ can be more efficient in finding NETs in this organ than scans.  There is a very well known surgical technique called “running the bowel” where they check the small intestine for signs of other primary tumours – they can do the same with the large intestine.  Additional surgeries due to this lack of knowledge could come with significant morbidity. Multiple ‘nodes’ and ‘lesions’ are common in the thyroid.

2. Multiple primaries in different locations. This is common with Multiple Endocrine Neoplasia (MEN) syndromes (the name gives it away) and these may be metasynchronous. MEN1 for example can have tumours in what is called the ‘3 P’ locations, pituitary, pancreas and parathyroid. Of course MEN guys may also have multiple primaries in the same organ (multicentric).  Read more about MEN by clicking here.

There’s probably a third scenario (for all cancers) and that is multiple primaries with different cancers (i.e a second, third and fourth cancer etc). Synchronous would be really unlucky but metasynchonous is more likely and there are many NET patients with a second cancer.

What else helps find a NET? 

There are many other clues open to those involved in diagnosing a NET:

Patient. Very often the patient plays a big part of determining where the primary and other tumours might be by carefully describing symptoms.

Incidental Finds. NETs are very often found incidentally during trips to the ER/A&E and also during tests for something else. This is particularly the case with Appendiceal NETs and might explain why the average age of a patient is significantly lower in this type of NET.

Blood tests and Hormone Markers. We are not yet in a position where these types of tests can diagnose (but we are moving in that direction). In the case of unknown primaries (CUP), sometimes test results can help to find where some of these cancers started. With NETs, symptomatic patients can often test to confirm an elevated hormone marker which may narrow it down to a specific organ or gland. Read more here.

Scans and Endoscopies. Most cancers of a certain size may show up on conventional scanning such as CT, MRI and Ultrasound. Nuclear scans are now playing a bigger part in finding tumours which betray their location through functional behaviour by lighting up or glowing on these imaging devices. Endoscopies (e.g. gastroscopies, colonoscopies, even gastro intestinal pill cameras can be used) can help but like scans are not foolproof). Generally with NETs, if you can see it, you can detect it. Read more here.

Hereditary Conditions. Around 5-10% of NETs are hereditary in nature, mostly involving the MEN group of syndromes. Many of those people will know they are at risk of developing NETs and their doctors should know the most common locations for primary tumours associated with each gene. So a declared or suspected hereditary syndrome is useful in finding primary tumours if they exist and are proving difficult to find.

Biopsies. “Tissue is the issue”. Pathology can very often give really strong clues as to the type of NET and therefore the likely location of a primary tumour, for example additional tests such as immunostains. Many biopsies will come from secondary cancer (metastases), mostly the liver.  Despite all the potential diagnostic routes above, the place the cancer started is sometimes still not found and this may lead to atypical diagnostic/treatment plans and in certain cases this might even include exploratory biopsies via surgery (invasive/minimally invasive), perhaps combined with opportunistic tumour removal if found during the procedure.

Staging. Simple staging can be given if locations of metastases are known. For example in the case of Liver metastases, the stage is automatically Stage 4. However, the full staging definition relies on knowing distant metastases, loco-regional metastases and the full Tumour/Node/Metastases (TNM) definition (size, spread, etc) cannot be fully complete without a primary. Read more here.

Cancers of Unknown Primary

Cancer is always named for the place where it started, called the primary site. Sometimes doctors can’t tell where a cancer may have started. When cancer is found in one or more places where it seems to have spread, but the site where it started is not known, it is called a cancer of unknown primary (CUP) or an occult primary cancer.

When you look at the ratio of all cancers, the figure for cancers of unknown primary (CUP) is quite startling. Depending on where you look the figure is around 2-10%. That doesn’t seem a lot but when you consider the amount of people diagnosed with cancer, the total figure must be staggering. Interestingly, Cancer Research UK say that 60% of CUP cases are in the over 75s. In another interesting Swedish study, doctors claimed that the rates of metastatic cases were higher with certain NETs than they were in their anatomical counterparts, reinforcing the dangerous and sneaky nature of NETs.

Despite quite advanced scanning and diagnostic testing currently in place, and the extensive knowledge of NET specialists, there can still be reasons for not being able to find the primary tumour:

  • The primary is just too small to be seen and is growing quite slow. Very small cancers might not cause symptoms or be seen on scans. This is a particularly relevant point with NETs.
  • The primary could be hidden in tissue in between different organs causing confusion about the actual primary location.
  • The body’s immune system killed the primary cancer. It’s also possible (but not common) that any secondary cancer (i.e. metastases) is still growing.
  • The tumour has become loose from its primary location and exited the body, e.g. from a wall of the bowel and excreted out in the stool.
  • The primary cancer was removed during surgery for another condition and doctors didn’t know cancer had formed. For example, a uterus with cancer may be removed during a hysterectomy to treat a serious infection.

Summary

I hope this is useful for many NET patients, particularly those who are looking for a diagnosis or looking for a primary tumour.

Neuroendocrine Cancer – at times, it can really be like looking for a needle in a haystack.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

Please Share this post

 

RonnyAllan.NET – Community Newsletter Covering November 2018

Newsletter Nov 18
Summary for November 2018

NET News

1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms.  My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA.   I almost got to my 1 million ‘reach’ on twitter in ONE WEEK straddling NET Cancer Day (see below) – just a wee Scottish guy with a less common disease and a computer. Curiously not mentioned by INCA in their recent newsletter.  So I thought I’d mention it instead.

Mind you, every day is NET Cancer Day on my social media platforms. I push on.

Every day is NET Cancer Day

 

45805256_1992143267537828_1584897212020686848_n
Join my twitter army for a new paradigm in NETs awareness

2.  Thanks for supporting my photo on Facebook and Twitter – it has become the most liked post on my Facebook ever with over 1000 likes.  You can link directly to it by clicking here:

45610294_1983128528439302_5378612202188046336_n

3. Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards.  You can read about my Ga68 PET/CT experience here and my fibrosis issues here.  I recently has a Renal MAG3 nuclear scan to determine the efficacy of my kidney function – waiting on results but expecting good news.

fibrosis an unsolved mystery

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.

Blog Site Activity in November

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Neuroendocrine Cancer is normally slow growing Neuroendocrine Cancer Syndromes: it may be slow growing BUT …..  My new campaign to highlight issues surrounding living with Neuroendocrine Cancer
pancreatic vs neuroendocrine Awareness article to illustrate the differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary.
fibrosis an unsolved mystery Updated version of NET Fibrosis.
slow growing cancer Updated version of NET – normally slow but always sneaky
witches brew Updated version of NET Syndromes – a witch’s brew
Your-favourite-articles-1.jpg Your favourite posts.  Revised list of anything above 5000 hits. I now have three articles with over 20,000 views.
Newsletter Oct 18
October 2018 Newsletter in case you missed it.
caricture For most of November, my name branded facebook page was the fastest rising public Facebook page on the planet about NETs. I use this page to like and comment on other healthcare pages (it draws in interest in NETs). Some of you will also recognise it as the main ID inside my closed group. It’s also a backup to this page (NETCancerBlog) as you will not always see stuff on my main page due to Facebook gremlins.

(Don’t unlike, I need your strength in numbers to generate awareness).

There were many distractions in November 2018, I’m actually quite busy with external projects but still managed over 35,000 views, the second biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:

Home page / Archives More stats 2,936
Neuroendocrine Cancer – normally slow but always sneaky? More stats 2,321
Neuroendocrine Cancer Syndromes: A Witch’s Brew More stats 1,473
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. More stats 1,390
Living with Neuroendocrine Cancer – Home Page More stats 1,345
Neuroendocrine Cancer – Hormones More stats 1,333
Neuroendocrine Cancer – is normally slow growing BUT ….. More stats 1,305
Neuroendocrine Cancer – tumour markers and hormone levels More stats 1,026
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD! More stats 959
Pancreatic Cancer vs Neuroendocrine Tumors of the Pancreas More stats 944
The Human Anatomy of Neuroendocrine Cancer More stats 875

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer


  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 30th November, there were almost 2200 people in the group. It’s the fastest growing group in the world for NETs.

And I’m working on a guest Gastroenterologist for a third chat.  To be confirmed.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world.  Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’m working on a video shoot next week for a Pharma company who are looking at how cancer patients live from day to day.  More info later when I am at liberty to tell you.
  • I’m working on an association with a Pharma company to help with patient portals.  Early days.
  • I’m working on an association with a healthcare company to help with their marketing.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 244 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 203 times by other tweeters, 2331 people looked at my profile (where it mentions NETs) and I gained 64 new followers. My weekly ‘reach’ is consistently between 400,000 and 800,000, heading for 1 million soon. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • proud to be

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 777,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 7200 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life


Neuroendocrine Cancer – is normally slow growing BUT …..



I have a lot of be thankful for – I’m still here for starters!


BUT

……… here’s a list of 10 things I’m NOT thankful to Neuroendocrine Cancer for!

Thanks for growing inside me for years before making your vague announcement

Sorry too late, I’m metastatic and around 50% of patients will be at diagnosis (so I’m not alone!). It’s very SNEAKY!

No thanks for making a right mess inside my body!

I mean, I look really good, I look really well, but you should see my INSIDES

No thanks for generating fibrosis throughout my mesentery and retroperitoneum!

I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately I had a surgeon who had operated on many NET patients and has seen this issue before.  After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270 degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully).  That said, the abstract papers above has led me to believe that my retroperitoneal fibrosis is clinically significant.  In fact I have spent the last 3 months worrying about some of it growing into reach of important vessels and only just been given the all clear (for now). 

fibrosis an unsolved mystery

No thanks for screwing up some of my hormones

There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved.  Serotonin has caused fibrosis in my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!


No thanks for the ongoing symptoms and side effects

I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me).  I don’t suffer too much nowadays other than side effects of the disease or the treatment I’ve had or receiving.  However, I know from speaking to many patients the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.

These syndromes can be so strange and so weird, they can be very difficult for patients, nurses and doctors to treat. They can be a real ‘witch’s brew’.

Surveillance and treatment for life SUCKS!

But I need constant surveillance, it’ll keep me alive.

No thanks for the weight loss

As if I needed it

No thanks for the hypothyroidism

Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels.

No thanks for increasing my diabetes risk

No thanks for pushing me into pre-diabetes. My blood sugar is spiking, most likely due to treatment.

No thanks for making me retire early

I loved my job but not if it was going to kill me. I made my own decision  based on how I could survive in a financial sense. Made easier as I was only 8 years from retirement but I guess I’m one of the lucky ones despite the fact I took a big hit on the income going into my bank account.

The truth is that many people still need to work whilst struggling with side effects of the cancer and its treatment. Getting some form of financial assistance from the government is not a done deal.

Neuroendocrine Cancer is a very expensive disease to treat.

This is fast becoming a big issue regardless of country and regardless of healthcare system in place. However, in privately funded healthcare, it can be exacerbated by the level of insurance cover. Read more about financial toxicity for cancer patients which is a growing problem worldwide.

……….. and no thanks to anyone who says it’s a “good cancer


Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


wego-blog-2018-winner


patients included

PLEASE SHARE THIS POST

RonnyAllan.NET – Community Newsletter Covering October 2018


Summary for October 2018

NET News

Several headlines covering the past month:

1. The annual NANETS symposium took place last month and I constructed an article of several important outputs.  One day I might make it there, been to ENETS twice.  Would love to attend UKINETS but they don’t seem very ‘patient’ friendly.

2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com.  The audience was a mix of the Pharmaceutical industry, Healthcare industry and Patient Advocates from many different illnesses.  A fantastic and real awareness opportunity which is part of my promise to take NET awareness to new audiences rather than just share stuff between NET patients and advocates.

the best kind of story – a 2 legged one

3. I’m still reeling from winning the 2018 WEGO Blog Award and if you missed the live announcement, you can listen to the quite short video clip here.

Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards.  You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.

Blog Site Activity in September

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Neuroendocrine Cancer Syndromes: A Witch’s Brew.  My 2018 themed Halloween post with a serious awareness message.
How to talk to a cancer patient without being a complete twit – a serious but partly light hearted slant on communications with a cancer patient, includes doctor-patient communications.  Bonus article about signs you need a new doctor.
Living with Cancer – Worrier or Warrior ? worry and anxiety is common with cancer patients but can you worry too much to the point it is counter productive?  Even warriors can worry.
Short Update from NANETS 2018
On your Bike – personal story about trying to live better with cancer and its consequences
Your-favourite-articles-1.jpg Your favourite posts.  Revised list of anything above 5000 hits. I now have three articles with over 20,000 views.
September 2018 Newsletter in case you missed it.

There were many distractions in October 2018, I was very busy with Ipsen speaker stuff plus a holiday in Scotland but still managed over 32,000 views, the third biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:

Neuroendocrine Cancer – Trick or Treat? More stats 1,535
Living with Neuroendocrine Cancer – Home Page More stats 1,116
Neuroendocrine Cancer Syndromes: A Witch’s Brew More stats 1,065
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 866
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 864
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 817
‘Chinese Dumplings’ and Neuroendocrine Cancer More stats 809
Neuroendocrine Cancer – Short Update from NANETS 2018 More stats 758
Ever wonder what caused your NET? More stats 722
Gallium 68 PET Scans – Into the Unknown More stats 708

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer


  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st October 2018, there were almost 2000 people in the group. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world.  Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I spoke at the Eye for Pharma event in London alongside an important Pharma NET contact. See above.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 190 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 134 times by other tweeters, 1524 people looked at my profile (where it mentions NETs) and I gained 50 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 741,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 7000 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life


Neuroendocrine Cancer: A Witch’s Brew of Signs and Symptoms


cancer growth

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it’s a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.

The cancer can often be uncannily quiet, but the tumours can be ‘functional’ and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, lose weight, gain weight, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.  For those looking for a diagnosis, it can be very frightening.

One or more of the NET syndromes can be a weird concoction of strange, powerful or terrifying ingredients, designed to make you very ill; and doctors will be confused. 

Certain types of Neuroendocrine Cancer were once referred to by the out of date term of ‘Carcinoid‘ – now correctly referred to as a NET prefixed by its anatomical primary location. For the time being, the term Carcinoid Syndrome, associated with these types of NET persists; and is known to be capable of over secreting (amongst others) the vasoactive substance called serotonin. It is commonly thought that serotonin is the cause of the flushing, but this is only partially correct, the flushing also results from secretion of kallikrein, the enzyme that catalyzes a conversion to bradykinin, one of the most powerful vasodilators known.  Other components of the carcinoid syndrome are diarrhea, probably caused by the increased serotonin, which greatly increases peristalsis, leaving less time for fluid absorption, a pellagra-like syndrome, probably caused by diversion of large amounts of tryptophan from synthesis of the vitamin B3 (Niacin), which is needed for NAD production (oxidized form of B3). It also causes fibrotic lesions of the endocardium, particularly on the right side of the heart resulting in insufficiency of the tricuspid valve and, less frequently, the pulmonary valve and, uncommonly, bronchoconstriction. Other fibrosis spells include mesenteric and retroperitoneal desmoplasia which have the potential to dangerously obstruct important vessels and cause general discomfort at best.

 

serotonin

 

Carcinoid Syndrome is one of the most powerful and dangerous ‘witch’s brews’. 

The classic carcinoid syndrome includes flushing (80%), diarrhea (70%), abdominal pain (40%), valvular heart disease (40% to 45% but reduced to 20% since the introduction of somatostatin analogues), telangiectasia (25%), wheezing (15%), and pellagra-like skin lesions (5%). Carcinoid syndrome, first described in 1954 by Thorson and co-workers, has the following features: malignant neuroendocrine tumour of the small intestine, normally with metastases to the liver, sometimes with valvular disease of the right side of the heart (pulmonary stenosis and tricuspid insufficiency without septal defects), peripheral vasomotor symptoms, bronchial constriction, and an unusual type of cyanosis. One year later, Dr. William Bean gave the following colorful description of carcinoid syndrome:

“This witch’s brew of unlikely signs and symptoms, intriguing to the most fastidious connoisseur of clinical esoterica—the skin underwent rapid and extreme changes resembling in clinical miniature the fecal phantasmagoria of the aurora borealis.” 

Other witch’s brews include the group of NET syndromes associated with over-secretions of Insulin, Glucagon, Gastrin, Vasoactive Intestinal Peptide (VIP), Pancreatic Polypeptide (PP) and Somatostatin.  Read more about these and other syndromes here.

NET Syndromes

One of the most scary witch’s brews is the group of symptoms associated with one of the most uncommon types of NET, the catecholamine and metanephrine (adrenaline and noradrenaline) secreting tumours known as Pheochromocytoma and Paraganglioma. These tumours are likely to cause a barrage of symptoms such as High blood pressure, Heavy sweating, Headache, Rapid heartbeat (tachycardia), Tremors, Paleness in the face (pallor) and Shortness of breath (dyspnea).

spotlight on pheo para

All of the above is a diagnostic nightmare for those who have the symptoms and remain undiagnosed – no fun for the doctors either – this why we need so much more awareness and education – it’s one of the key aims of all my social media sites.  Another aim of my sites is to support those who are diagnosed as these symptoms can continue following diagnosis and treatment. Many NET patients need constant surveillance and follow-up, many for life.

This is a very spooky disease, it will slowly grow without you knowing, it will mess with your body and mind, and if left alone to plot its devious and destructive course, it will kill.  Some are faster growing but they have the same traits – they just kill faster.  Share this post and potentially save a life.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

 

How to Talk to a Cancer Patient Without Being a Complete Twit

I enjoyed reading “8 rules on how to talk to a cancer patient” because I think much of it is written with ‘tongue in cheek’.  Great title!

In UK we might even spell the word ‘twit’ slightly differently (UK people will get it!). Some of the rules are directed at doctors and I’m sure some doctors will laugh (if you’re a doctor and you didn’t laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a ‘pity party’ and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don’t want pity.

I’ve added rule number 9 which is a true story I picked up in my own community which I found absolutely unacceptable and I certainly did not laugh.  Thanks to ‘Patient A’ for the quote.

Read the 8 rules here:

https://www.mcsweeneys.net/articles/how-to-talk-to-a-cancer-patient-without-being-a-complete-twit

You may also enjoy this article which contains 16 ‘red flags’ that might mean it’s time to find a new doctor.  Easier in some countries than others and I suspect we have all encountered at least one of them.  I don’t think we should be changing doctors too often and we shouldn’t be changing just because of one of these ‘red flags’ (although the example above is pretty offensive).

16 ‘Red Flags’ That Might Mean It’s Time to Find a New Doctor

Another good one is an actor based video which discusses about the things people sometimes say (often clumsily) to patients that often don’t hit the right chord – check out my article “Things not to say to a someone with cancer“.

And of course we all look so well as Neuroendocrine Cancer patients – but you should see our insides.
Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Neuroendocrine Cancer – Short Update from NANETS 2018

NANETS 2018

I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked!

I’ve been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting.  It’s a scientific conference for the most part, but I guess some basic stuff is also covered.

However, in the world of instant contact and communications on the internet, together with twitter, one can keep up to speed on what is or has been discussed.  One day, NANETS and ENETS will be sufficiently advanced that we can all watch the presentations from the comfort of our own homes (you heard it here!)

I’ve put together a collection of things I found interesting and offer them here for your perusal and selection via links.

One of the first issues to discuss was the confirmation of the new NANETS management team and board – you will recognise most names here:

Officers (2018 to 2020 Term):

    • Chair: James Howe, MD The University of Iowa Carver College of Medicine
    • Vice Chair: Emily Bergsland, MD The University of California San Francisco School of Medicine
    • Secretary: Jonathan Strosberg, MD Moffitt Cancer Center
    • Treasurer: Pam Kunz, MD Stanford University Medical Center

Board of Directors:

      • Jennifer Chan, MD, MPH (2018-2020) Dana Farber Cancer Institute
      • Thorvardur Halfdanarson, MD (2018-2020) The Mayo Clinic
      • Daniel Halperin, MD (2015-2019) University of Texas MD Anderson Cancer Center
      • Erik Nakakura, MD, Ph.D. Research Committee Board Representative (2018-2020) The University of California San Francisco School of Medicine
      • Rodney Pommier, MD (2018-2020) Oregon Health and Science University
      • Diane Reidy, MD (2015-2019) Memorial Sloan Kettering Cancer Center
      • Simron Singh, MD, Conference Committee Board Representative (2018-2019) Odette Cancer Center at Sunnybrook Health Sciences Center
      • Michael Soulen, MD (2018-2020) The Hospital of the University of Pennsylvania
      • James Yao, MD (2018-2020) University of Texas MD Anderson Cancer Center

Abstract Selection

A selection of poster abstracts below.  There was a lot more but these ones made output on twitter so I guess these were headline acts and probably of interest to patients. The extract texts/short videos I’ve included are probably all that most patients will need but when I have electronic access to the posters, I will update with links if possible and repost for those who would like to see the full detail.

The Value of Genetic Testing in NETs

This cover two posters, one for Neuroendocrine Carcinoma (very interesting) and the other covering Neuroendocrine Tumours (i.e. well differentiated NETs).  Click on the title above or click here.

An Update on Lung NET Guidelines

Some interesting snippets here and an indication that the most comprehensive Lung NET Guidelines are those produced by ENETS by Caplin et al.   Click on the title above or click here.

A Comprehensive Look at Update and Developments in NETs (Dr Thorvardur Haldanasron).

Interesting summary of new stuff in trials. Plus some interesting bits on SI NETs and pNETs.  Click on the title or click here.   There’s also a short video of Dr Haldanasron (slightly different content) – click here.

Sequencing of Lanreotide Can Improve Outcomes in Patients With Advanced GEP-NETs

Interesting trial output looking at the potential benefits of Lanreotide after Octreotide.  Click on the title or click here.

Dr Scott Paulson on Current Challenges in the NETs Treatment Landscape

Interesting and as with many specialist videos I’ve seen, sequencing of treatment remains challenging.  Text and video inside.  Click on the title to see more or click here.

Debating Best First-Line Treatment in Well-Differentiated G3 NENs

As you will know from my staging and grading article, there is now a Grade 3 well differentiated tumour status (called a NET rather than a Neuroendocrine Carcinoma).  However, there is not yet enough data to work out the optimum treatments, which may, in certain circumstances, be different from their poorly differentiated counterparts (Neuroendocrine Carcinoma).  Click on the title above or click here.

Examining the Benefits of Integrative Oncology, Nutrition in NETs

An unmet need – very interesting text.  Click on the title or click here.

Dr Heloisa Soares Discusses the Roles of Somatostatin Analogs in GEP-NETs

Dr Soares discusses the two roles of Somatostatin analogs: treating symptoms related to the tumors and controlling tumor growth.  Complete with video. Click on the title or click here.

Analysis Demonstrates Effectiveness, Patient Satisfaction With Lanreotide in GEP-NETs

Interesting data analysis about Lanreotide.  Click on the title or click here.

Ipsen Presents Data on Somatuline Depot at the North American Neuroendocrine Tumor Society (NANETS) Annual Symposium

Some very interesting stuff in here including comparisons with Octreotide.  Click on the title or click here.

Immunotherapy -Hits, Misses With New Therapies for Neuroendocrine Tumors

You may be prompted for a login, if so, let me know, I will post you the content.  The ‘misses’ is mainly the fact that Keytruda (Pembrolizumab) does not look good as a single agent treatment for high grade NEC. Headline is “Pembrolizumab, though generally well tolerated, showed limited activity as a single agent in high-grade neuroendocrine neoplasms (NENs) in this study,” Arvind Dasari, MD, of MD Anderson Cancer Center in Houston, and colleagues concluded.”  Some other interesting points though.   Click on the title above or click here.

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Please Share this post

 

Neuroendocrine Cancer – on your bike!

20181007_160547.jpg

There’s a Brit saying known as “on your bike” (sometimes colloquially called “on yer bike“).  It basically means “go away and stop bothering me” but there are other definitions including some ‘Anglo-Saxon’ versions (I won’t repeat those here!)

When I moved to my current home nearly 7 years ago, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year.  A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use.  In fact, Chris got a new one out of the deal! I’m reasonably fit (considering) but finding it so easy to opt for the sofa and there’s always something worth watching on TV, or something to do on my computer.  My personal trainer (Chris ♥) tends to provide some motivation, so it felt good that the recent bike idea came from me rather than from her.

However, some of the personal motivation came from a recent ‘brush’ with potential diabetic problems.  My blood glucose test has been spiking in the last 12-18 months and an HbA1c in May (a better guide) put me just inside pre-diabetic range. This prompted me to look more carefully at diet and exercise. I need to do this without losing too much weight though, I’m still struggling to put the weight back I that I lost from the June chest infection.

I have so say I’m enjoying my new exercise and have had some nice bike rides in the local forests.  I’ve since had a new HbA1c test which is back in normal range so I guess something is making it spike.  Lanreotide is my first guess – you can read more about Diabetes and NETs by clicking here.

I’m working with my doctors on the issue.

In the meantime, I’m getting on my bike and so can Neuroendocrine Cancer!

Exercise – it’s a free prescription.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego-blog-2018-winner


patients included

PLEASE SHARE THIS POST

 

RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletter Sep 18

Summary for September 2018

NET News

Several headlines covering the past month:

1. The annual NANETS symposium kicks off in a few days. I’m hoping to bring you news from the event (remotely, I won’t be there) and perhaps a summary in next month’s newsletter.

2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. Be careful where you look as many are still behind the curve on this issue. Their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course. Watch this space.

3. This very old news from 2007 has resurfaced – an autopsy on former US President Eisenhower confirmed he had a Pheochromocytoma after suffering from heart issues for some time prior to his death. Nonetheless, good publicity for Neuroendocrine Cancer. Read my Pheochromocytoma article here.

Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. I think they are still consulting with London on the feasibility of trying PRRT first. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist – this article will help and it also includes 10 questions to ask.

Blog Site Activity in September

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

don't worry it's benign widescreen Don’t worry, it’s benign! An article about the dangers in assuming that all NETs are benign. All NETs have malignant potential.
Diabetes The NET Effect Diabetes – the NET Effect. Latest article in the “NET Effect” series.
Diagnosing the undiagnosed Diagnosing the Undiagnosed. An article designed to give those looking for a diagnosis, some questions to ask with references. Plus other advice
A Neuroendocrine Tumour is NOT Neuroendocrine Cancer is not a type of another Cancer….. PERIOD! A follow on from the Aretha Franklin article to emphasise that Neuroendocrine Cancer is a cancer in its own right.
Newsletter Aug 18 RonnyAllan.NET – Community Newsletter August – in case you missed it.
Your-favourite-articles-1.jpg Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits. I now have two articles with over 20,000 views.
lets raise our sites Let’s raise our “sites” – twist on the word sights to indicate we need to keep on letting people know that a NET in a particular part of the anatomy should not be called that anatomical cancer. The change in graphic seems to have made this more popular.

There have been many distractions in September 2018, I was very busy with WEGO Health stuff but still managed 25,000 views. Here are the top 10 most read articles which contributed to last month’s figures:

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD! More stats 1,279
Living with Neuroendocrine Cancer – Home Page More stats 1,212
Diagnosing the Undiagnosed More stats 942
Neuroendocrine Cancer – tumour markers and hormone levels More stats 913
Neuroendocrine Cancer – normally slow but always sneaky More stats 785
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist) More stats 760
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption More stats 635
Neuroendocrine Cancer – let’s raise our ‘sites’ More stats 618
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 610
Diabetes – The NET Effect More stats 593

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 1st October 2018, there were almost 1900 people in the group. I might cap at 2000 to maintain the integrity of the site.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support and it meets with my association criteria.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 220 times on my personal account which led to over 140,000 views of my tweets. I was mentioned 145 times by other tweeters, 1648 people looked at my profile and I gained 74 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 600 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 709,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 6800 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

Don’t worry, it’s benign!


OPINION

One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by definition is malignant.

Any definition of the word ‘tumour’ will confirm it can either be benign or malignant. However, and while I’m sure there are benign NETs, the key statement to explain any slow growing or indolent NET is that they all have malignant potential – thus why surveillance and follow up is really important. This is the key factor in the changes found in the 2010 Digestive System World Health Organisation (WHO) classification system from the previous ‘flaky’ version. This reinforcement of the malignant potential of all NETs was duplicated in the recent 2017 Endocrine System equivalent, which is now proposed as a classification scheme for all NETs (see below).

“Carcinoid”

Of course we are not helped by the continued use of the term Carcinoid which decodes to ‘Cancer Like’ – that is potentially regressing the work of those specialists who are trying to undo the last 100 years of complacency in the medical world (and not really the type of awareness we need). The word is gradually being erased from NET nomenclature and the recent 2018 proposal by the International Agency for Research on Cancer (IARC) and WHO NET expert consensus panel to ditch it from the remaining versions of out of date WHO classifications (e.g. Pulmonary/Lung, Pituitary, Head & Neck, Genito-urinary, Adrenal and Paraganglia, Skin), is the final nail in the coffin for Carcinoid. RIP Carcinoid. This also supports our awareness issues with the media reporting the wrong cancer types based on anatomy of the primary tumour. Dear Doctors, Patient Advocates and Patients ….. please stop using the word!

I have lost count of the stories from Neuroendocrine Cancer patients who have been told their tumour was benign but then returned with incurable and metastatic cancer sometime downstream. Clearly there are doctors who do not understand NETs and/or are not aware of the changes in WHO classification schemes since 2010. Sure, some will prove to be ‘benign’ in nature and may not cause many issues but any Ki-67 below 3% is a formal grade of Neuroendocrine Neoplasm. I accept that it’s currently difficult to work out which cases will turn more aggressive and when, thus why surveillance and follow up are really important and also why patients should be seeing doctors who understand NETs. Worth also noting that many slow growing and indolent tumors can still often produce troublesome NET syndromes.

I’ve even heard one patient story where it was claimed a doctor called a metastatic NET case benign! Any definition of ‘benign’ on any respectable cancer site, will include the statement that they do not spread to other parts of the body. The NET Patient world is full of slow growing Grade 1 Stage 4 patients – by definition, they’re all malignant.

Read more detail in these articles as these issues are inextricably linked.

‘Benign vs Malignant’.
‘Carcinoid vs Neuroendocrine’
‘The Invisible NET Patient Population’
‘Staging and Grading’

I’m sure there are scenarios in all cancers where tumours can be benign and will never harm the person but if a Doctor says you have a Neuroendocrine Tumour and not to worry because it’s benign, ask questions.  Start with “how do you know it will never turn malignant” and “what will be done going forward to check”. 

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news. Please also support my other site – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


Please Share this post for Neuroendocrine Cancer awareness and to help another patient

Diabetes – The NET Effect


My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET – the outcome of that is still a work in progress. Earlier this year, my thyroid ‘lesion’ on watch and wait was given a ‘damping down’ with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream.

Bubbling behind the scenes and clamoring for attention is the spiking of my blood glucose test results and I was very recently declared ‘at risk’ for diabetes One of my followers entitled a post in my group with “The hits keep coming” in reference to encountering yet another problem in the journey with Neuroendocrine Cancer. I now know how she feels, this issue is a bit of a ‘left fielder’. However, having analysed the situation and spoken to several doctors, I can now put pen to paper.

Neuroendocrine Cancer is not a household name (…… I’m working on that) but diabetes certainly is. The World Health Organisation reports that the number of adults living with diabetes has almost quadrupled since 1980 to 422 million adults. In USA, estimates from CDC stated around 10 million people diagnosed with diabetes with a further 84 million in pre-diabetes state (at risk). In UK around 3.7 million people have diabetes with about 4 times that amount ‘at risk’. It’s a growth industry (…….. but so is NETs – in the last 40 years, the incidence of NETs is rising at a faster rate than diabetes, a disease which some writers have described as an epidemic).

With those numbers, it follows that many NET patients will be diabetic before diagnosis, some will succumb to diabetes whether they have NETs or not, and some may have an increased risk of succumbing due to their treatment. Some may even be pushed into diabetes as a direct result of their NET type or treatment. It’s important to understand diabetes in order to understand why certain types of NET and certain treatments could have an involvement.

The Pancreas

For understanding of this article, it’s worth noting the pancreas has two main functions: an exocrine function that helps in digestion and an endocrine function that regulates blood sugar. I have talked about the exocrine function in relationship to Neuroendocrine Cancer at length – check out this article on Pancreatic Enzyme Replacement Therapy. In this article, I now want to cover the issues with the endocrine function and blood sugar. First a short primer on diabetes – it is necessarily brief for the purposes of this article.

 

Diabetes Primer

TypeS OF DIABETES

Type 1 and Type 2 Diabetes are fairly well-known. There’s actually more than two types, but these are the most common. Type 2 is the most prevalent with around 90% of diabetes cases. When you’ve got Type 1 diabetes, you can’t make any insulin at all. If you’ve got Type 2 diabetes, the insulin you make either can’t work effectively, or you can’t produce enough of it. Additional types may come up in the subsequent discussion.

What is the problem?

What all types of diabetes have in common is that they cause people to have too much glucose (sugar) in their blood. But we all need some glucose. It’s what gives us our energy. We get glucose when our bodies break down the carbohydrates that we eat or drink. And that glucose is released into our blood. We also need a hormone called insulin. It’s made by our pancreas, and it’s insulin that allows the glucose in our blood to enter our cells and fuel our bodies.

If you don’t have diabetes, your pancreas senses when glucose has entered your bloodstream and releases the right amount of insulin, so the glucose can get into your cells. But if you have diabetes, this system doesn’t work properly. Diabetes is associated by being overweight but there isn’t a 100% correlation with that. However, when an individual becomes overweight, there is an increase in free fatty acids in the blood stream which may contribute to reduced insulin sensitivity in the tissues, leading to increased glucose levels in blood.

Symptoms and diagnosis of Diabetes

Different people develop different symptoms. In diabetes, because glucose can’t get into your cells, it begins to build up in your blood. And too much glucose in your blood causes a lot of different problems. To begin with it leads to diabetes symptoms, like having to wee a lot (particularly at night), being incredibly thirsty, and feeling very tired. You may also lose weight, get infections like thrush or suffer from blurred vision and slow healing wounds.

I see these symptoms mentioned very frequently and normally people are trying to associate them with NETs and/or the treatment for NETs.

Diabetes diagnosis is normally triggered diagnosed based on blood tests such as fasting Blood Glucose (snapshot) and/or Glycated Hemoglobin (A1C) or HbA1C.

Complications

Over a long period of time, high glucose levels in your blood can seriously damage your heart, your eyes, your feet and your kidneys. These are known as the complications of diabetes.

But with the right treatment and care, people can live a healthy life. And there’s much less risk that someone will experience these complications.

What are the direct connections with Diabetes and NETs?

It’s not surprising that diabetes is mostly associated with Neuroendocrine Tumors of the Pancreas but there are other areas of risk for other types of NETs including to those who are existing diabetics – see below.

Surgery

The main types of surgery for Neuroendocrine Tumors of the Pancreas are Distal Pancreatectomy (tail), Sub-total pancreatectomy (central/tail), Classic Whipple (pancreaticoduodenectomy – head and/or neck of pancreas), Total pancreatectomy (remove the entire pancreas) or an Enucleation (scooping out the tumour with having to remove too much surrounding tissue). From the PERT article link above (exocrine function), you can see why some people need this treatment to offset issues of reduced production of pancreatic enzymes. The same issue can develop with a reduced endocrine function leading to the development of diabetes.

NET Syndromes

The different types of functional pancreatic NETs often called syndromes in their own right due to their secretory role. One might think that Insulinomas are connected to diabetes issues but this hormonal syndrome is actually associated with low blood sugar (hypoglycemia), although low blood sugar can turn out to be a complication of diabetes treatment.

A NET syndrome known as Glucagonoma (a type of functional pancreatic NET) is associated with high blood glucose levels. About 5-10% of pancreatic neuroendocrine tumors are Glucagonomas, tumors that produce an inappropriate abundance of the hormone glucagon. Glucagon balances the effects of insulin by regulating the amount of sugar in your blood. If you have too much glucagon, your cells don’t store sugar and instead sugar stays in your bloodstream. Glucagonoma therefore leads to diabetes-like symptoms (amongst other symptoms). In fact Glucagonoma is sometimes called the 4D syndrome – consists of diabetes, dermatitis, deep venous thrombosis (DVT), and depression.

Another functional pancreatic NET known as Somatostatinoma is prone to developing insulin resistance. Somatostatinomas produce excessive amounts of somatostatin which interferes with the insulin/glucagon function and could therefore lead to diabetes.

Diabetes caused by cancer or cancer treatment

Worth noting that this type of diabetes is sometimes known as ‘Pancreatogenic diabetes’ and this is actually classified by the American Diabetes Association and by the World Health Organization as type 3c diabetes mellitus (T3cDM) and refers to diabetes due to impairment in pancreatic endocrine function due to acute cancer and cancer treatment (and several other conditions). The texts tend to point to cancers (and other conditions) of the pancreas rather than system wide. Prevalence data on T3cDM are scarce because of insufficient research in this area and challenges with accurate diabetes classification in clinical practice. (Authors note: Slightly confusing as many text say that type 3 diabetes is proposed for insulin resistance in the brain (diabetes associated with Alzheimer’s disease).  There’s another term for a complete removal of the entire pancreas – Pancreoprivic Diabetes

Other treatment risks

Somatostatin Analogues (e.g. Octreotide and Lanreotide) are common drugs used to control NET Syndromes and are also said to have an anti-tumor effect. They are known to inhibit several hormones including glucagon and insulin and consequently may interfere with blood glucose levels. The leaflets for both drugs clearly state this side effect with a warning that diabetics who have been prescribed the drug, should inform their doctors so that dosages can be adjusted if necessary. The side effects lists also indicates high and low blood glucose symptoms indicating it can cause both low and high blood glucose (hypoglycemia and hyperglycemia). For those who are pre-diabetic or close to pre-diabetic status, there is a possibility that the drug may push blood tests into diabetic ranges.
Afinitor (Everolimus). The patient information for Afinitor (Everolimus) clearly states Increased blood sugar and fat (cholesterol and triglycerides) levels in blood: Your health care provider should do blood tests to check your fasting blood sugar, cholesterol and triglyceride levels in the blood before you start treatment with AFINITOR and during treatment with AFINITOR”
Sutent (Sunitinib). The patient information for Sutent (Sinitinib) clearly states that low blood sugar (hypoglycemia) is a potential side effect. It also advises that low blood sugar with SUTENT may be worse in patients who have diabetes and take anti-diabetic medicines. Your healthcare provider should check your blood sugar levels regularly during treatment with SUTENT and may need to adjust the dose of your anti-diabetic medicines.

In rare cases, certain NETs may produce too much Adrenocorticotropic hormone (ACTH), a substance that causes the adrenal glands to make too much cortisol and other hormones. This is often associated with Cushing’s syndrome. Cortisol increases our blood pressure and blood glucose levels with can lead to diabetes as a result of untreated Cushing’s syndrome.

Summary

I think it’s sensible for all NET patients, particularly those with involvement as per above and who are showing the signs of hypoglycemia and hyperglycemia, to be checked regularly for blood glucose and if necessary HbA1c. Many patient information leaflets for the common NET treatments also indicate this is necessary. Always tell your prescribing doctors if you are a diabetic or about any history of low or high blood glucose before treatment for NETs.

My brush with Diabetes (as at Jan 2019)

My blood glucose levels started to climb slightly in 2016 but HbA1c remained normal. However, an HbA1c test in early 2018 put me into pre-diabetic range (44 mmoL/moL). I explained some of the above article to my GP who is corresponding with a diabetes expert at secondary care – the expert suggested that I need to be monitored carefully as weight loss is not necessarily the best response. I have kept my NET team up to date.

At the time of updating, two separate and sequential HbA1c tests (3 month interval) came back normal at 36 mmoL/moL.  I’m pragmatic enough to know that I do not need to lose weight as one of the aims of reducing my blood glucose and HbA1c levels (something emphasised by the above mentioned diabetes specialist).

I even got on my bike to do a little bit more exercise just in case!

At this point, I cannot yet say if this is the beginning of progressive Type II diabetes or if my medication is causing these spikes in my blood glucose and HbA1c. Judging by 2 x normal HbA1c, looks like the somatostatin analogue (Lanreotide in my case) may caused a spike to a pre-diabetes score.  I will keep you posted.

Summary – if you are noticing these symptoms, get your blood sugar checked (with acknowledgement to Dr Pantalone from Cleveland Clinic)

1. You’re making more trips to the bathroom

Having to go to the bathroom more than normal, particularly at night, is a sign that your blood sugar might be out of whack.

Dr. Pantalone says one of his patients came in for a diagnosis after a family member noticed that he was using the bathroom during each commercial break when they watched TV.

2. You’re getting frequent urinary or yeast infections

When your blood sugar is high and your kidneys can’t filter it well enough, sugar ends up in the urine. More sugar in a warm, moist environment can cause urinary tract and yeast infections, especially in women.

3. You’re losing weight without trying

If you have diabetes, your body isn’t able to use glucose (sugar) as effectively for its energy. Instead, your body will start burning fat stores, and you may experience unexpected weight loss.

4. Your vision is getting worse

High sugar levels can distort the lenses in your eyes, worsening your vision. Changes in your eyeglass prescription or vision are sometimes a sign of diabetes.

5. You’re feeling fatigued or exhausted

Several underlying causes of fatigue may relate to diabetes/high sugar levels, including dehydration (from frequent urination, which can disrupt sleep) and kidney damage.

This feeling of exhaustion is often persistent and can interfere with your daily activities, says Dr Pantalone.

6. You’re noticing skin discoloration

Something that Dr. Pantalone often sees in patients before a diabetes diagnosis is dark skin in the neck folds and over the knuckles. Insulin resistance can cause this condition, known as acanthosis nigricans.

 

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego-blog-2018-winner

Neuroendocrine Cancer: Diagnosing the Undiagnosed


Neuroendocrine Cancer is one of a number of “difficult to diagnose” conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In some cases, many people don’t feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It’s a very sneaky type of cancer and if left too long it can be life threatening – CLICK HERE to find out why.

The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate. It’s not only a sneaky type of cancer but it’s also very complex. It’s a heterogeneous group of malignancies with a varied and confusing histology and nomenclature to match. As I said above, many people are asymptomatic for years whilst the tumor grows and some might say that it’s somewhat ‘lucky’ to have symptoms to help aid a diagnosis. Many find that a lack of knowledge of Neuroendocrine Cancer in primary care, doesn’t always produce results. Common misdiagnoses include (but not limited to), Irritable Bowel Syndrome (IBS) and other common digestive diseases, menopause, appendicitis, hypertension, gastritis, asthma. Neuroendocrine Cancer is much more likely to be diagnosed at secondary care if a referral for ‘something’ can be achieved.

……..cue internet searches (Dr Google)

I think the rise and the power of the internet and rise of social media applications is very much helping generate awareness and knowledge of Neuroendocrine Cancer and those looking for a diagnosis may find help in this way. I suspect this instant access to information has played its part in the diagnostic improvements I mentioned above. Take my own efforts for example, I’m a wee Scottish guy with a computer and I’m already accelerating towards a million blog views – there’s clearly a market for what I produce. In terms of those looking for a diagnosis, if only one gets an earlier diagnosis due to my site, I’ll be happy.

Unfortunately, the internet can often be a minefield and in many cases, can lead to quite unnecessary worry for those looking for a solution.

Incoming Questions

I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, tumour markers, hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer.

Many have already had multiple doctor’s appointments and tests. If they have not yet had a scan, I encourage them to try to get one ‘by hook or by crook’. Despite what you read on patient forums and surveys, the vast majority of Neuroendocrine diagnoses will be triggered by a conventional imaging such as CT and/or MRI. If you can see it, you can detect it. 

When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again confirming the power of the internet and the savvy ‘internet patient’. This is fine if you look in the right places of course – for certain things there are more wrong places on the internet than right ones.

If I have time, I’m happy to chat with these people, some are very frustrated – in fact some are so frustrated that they just want a diagnosis of something even if that something is really bad.  Some are not showing anything on any scan but in certain cases, it can be likened to finding a needle in a haystack.

What do you say to someone who is utterly convinced they have Neuroendocrine Cancer but CT/MRI/Octreoscan/Ga68 PET are all clear, Chromogranin A and 5HIAA are in range but they still say they have (say) diarrhea with its potential for literally thousands of differential diagnoses. It’s a tough gig.

Example:

My scan came back normal. That should be good news. But, if there is no tumor, how can I be suffering from all the symptoms of carcinoid syndrome? Is that diagnosis wrong? Are the urine and blood test results wrong? I’m awaiting a MRI scan to take another look to see if the doctor can find anything. I don’t know what they’ll find. I don’t want them to find anything. But I’m afraid of what will happen if they don’t.

Anon

Patient Forums

I always let the undiagnosed know that Neuroendocrine Cancer patients are some of the most friendliest and helpful people you can meet, they will treat you as one of their own. There will be a number of diagnosed people online who have gone through what the undiagnosed are going through, so they will both sympathise and emphasise. But … this can often have the adverse effect of pushing them into believing they must have Neuroendocrine Cancer. This makes for interesting discussions given the number of people who automatically assume that ‘flushing’ or ‘diarrhea’ (as described by the undiagnosed) must be Neuroendocrine Cancer without any reference to the many differential diagnoses and the context of what that actually means in Neuroendocrine Cancer terms.

10 Questions to ask your doctor/specialist for those Diagnosed with Neuroendocrine Cancer (and where to find a specialist)

I once wrote an article for DIAGNOSED NET Patients suggesting 10 Questions to ask their doctor. So I wanted to take a step back in context, using the knowledge I now have, and put myself in the shoes of someone who thinks they may have Neuroendocrine Cancer but is not yet diagnosed.

Key questions to ask your doctor/specialist for those trying to confirm or discount Neuroendocrine Cancer

Dear undiagnosed people. I totally understand your fear. There’s nothing worse than being ill and not knowing what illness you have. I’ve therefore compiled a list of 3 key questions for you to ask – think of it as a tick list of things to ask your doctor to do or check . I have linked several background articles for you to prepare your case. However, I cannot promise your doctor will agree or take any action, in fact some might be annoyed about the lack of trust. However, doing your homework really helps, including diaries and other evidence.

I also wouldn’t say that a negative to all the questions will mean you definitely do not have Neuroendocrine Cancer but at least these questions might provide your doctor and yourself with some food for thought, perhaps leading to the diagnosis of ‘something’. The questions below assume that routine blood tests have been done, including Full Blood Count, Liver, Renal, Bone, Glucose.

Questions for the UNDIAGNOSED to ask their treating physician

“I think I might have a type of cancer known as Neuroendocrine Cancer or Neuroendocrine Tumours (NET) because <<< insert your own story>>>. Would you please consider the following tests and checks:”

1. Chromogranin A (CgA) is a marker which is quite sensitive for Neuroendocrine Tumours, essentially measuring tumour bulk potentially indicating the presence of Neuroendocrine Tumours. There can be other reasons for an elevated CgA figure, including the patient’s use of proton pump inhibitors (PPI) (see the article for an alterative test where this is the case). Read more here – Neuroendocrine Cancer – Tumour and Hormone Marker tests.

2. 5HIAA is a hormone marker for the most common type of NET, particularly if the patient is presenting with flushing and diarrhea. Many NETs have associated syndromes and hormone markers can be a guide to help with diagnostics. Read more about 5HIAA and other hormone markers for different types of NET and different syndromes here Neuroendocrine Cancer – Tumour and Hormone Marker tests.

3. Scans. Most NETs can be seen on a CT scan although liver metastasis can often show more clearly on an MRI. There are also nuclear scan options to confirm conventional imaging findings. Some NETs may be accessible via endoscopy and ultrasounds can also give hints for further investigation. In some cases, nuclear scans will find things that conventional imaging cannot because radionuclides can normally pick up oversecreting tumours. Read more in my article “If you can see it, you can detect it”.

You can hear two NET specialists talking about the issues surrounding the diagnostics here.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

wego-blog-2018-winner

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!


Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.

About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said “Pancreatic Cancer of the Neuroendocrine Type”. Her death certificate quoted “Pancreatic Neuroendocrine Cancer”. Despite this, the media outlet which published her death certificate still led the article with the headline “Pancreatic Cancer”. Exactly the same thing happened with Steve Jobs and a few others. And that’s only the ones we know about – how many other pe0ple are being labelled and documented with the wrong cancer type?

I cannot read the minds of the healthcare professionals and media when they compile their press releases and articles but I’m fairly certain they simply do not understand that Neuroendocrine Cancer is a cancer within its own right and is not a type of another cancer. They simply do not understand the term ‘Neuroendocrine’ and they think the readership won’t either, and so it’s probably easer just to leave that bit out. The result is that a person has, or dies with, is labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (fake news), and Neuroendocrine Cancer is once again robbed of much needed awareness. Our community needs to start focusing more on these types of awareness issues rather than continually flaunting pictures of black and white striped animals.

I’m even starting to think that the well known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET for short, is actually working against us because of the inclusion of the organ as the first word of the term. Going forward, I will be using Neuroendocrine Cancer with a pancreatic primary, etc.

Neuroendocrine Cancer is NOT a type of another cancer PERIOD!

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Please Share this post

 

 

RonnyAllan.NET – Community Newsletter Covering August 2018

RIP Aretha Franklin – Neuroendocrine Cancer

Summary for August 2018

NET News

Several headlines covering the past month:

1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as ‘Pancreatic Cancer’ mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death certificate – I believe this is the most concrete evidence of her type of cancer. Click here for Aretha.

2. PRRT in UK took a step forward when NICE finally approved the drug (Lu-177) for use in England and there is mention of some direction for Wales in the document (I’m trying to find out what it means for Wales). Scotland had already been approved last month and I assume Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place. You can read the NICE approval document which also has a very interesting ‘Implementation’ section. Click here to read.

3, The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. However, their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course.

Personal News

My NET. I await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. The holiday season will soon be over, fortunately the issues are not classed as urgent at this stage. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

WEGO Health Awards. I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.

Blog Site Activity in August

Due to the vagaries of Facebook inner workings, some of these articles created or updated in August 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

I wish I had another cancer – not about me but about ‘cancer Olympics’ we see online – there’s a twist to this one though.
RIP Queen of Soul Aretha Franklin – Neuroendocrine Cancer. Very said news but we are currently battling to ensure awareness comes to Neuroendocrine Cancer.
J Nucl Med 2017 Mar 58(3) 451-7, FIGURE 2 (1) 64Cu-DOTATATE – a potential addition to the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer? news from the Nuclear PET scan industry of interest to NETs plus why there is a shortage of Ga68 PET radionuclide in USA.
prrt update PRRT Update – patients please read and advise on new locations. Contains the patient provided update on new locations for insurance funded PRRT in USA. PLUS news of PRRT approval in the United Kingdom
Newsletter July 18 RonnyAllan.NET – Community Newsletter July 2018 – in case you missed it.
Your-favourite-articles-1.jpg Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits
Upgraded from 7 to 8 tips for conquering fear
My most viewed article and updated now to include Aretha Franklin – The Human Anatomy of Neuroendocrine Cancer

There have been many distractions in August 2018 but following the Aretha headline, I broke all records for hightest numbers of viewing in one day, in one week and in one month. I almost made 40,000 views. Here are the top 10 most read articles which contributed to August’s figures:

RIP Queen of Soul Aretha Franklin – Neuroendocrine Cancer More stats 7,608
The Human Anatomy of Neuroendocrine Cancer More stats 3,985
Home page / Archives More stats 1,831
Living with Neuroendocrine Cancer – Home Page More stats 1,232
I wish I had another cancer More stats 1,185
Chemotherapy for Neuroendocrine Cancer More stats 807
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 778
Ever wondered what caused your NET? More stats 765
Neuroendocrine Cancer – normally slow but always sneaky More stats 756
Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! More stats 639

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st August 2018, there were almost 1650 people in the group. I might cap at 2000 to maintain the integrity of the site.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event, This was not a NET Cancer event but I was invited due to my wider healthcare advocate work. That was a tough gig but great experience. There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018: