Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 12th May 2020I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (….you should’ve seen the other guy). Bar the odd mandatory injection, I avoided nurses (….and boxing) for many years after that. But now ……Today is international nurses day. These guys have hit the headlines recently and many of us are dependant on them for ongoing care etc.I'd like to publicly thank all the nurses and healthcare assistants who helped me get better and brought me here today - and who continue to watch my back!Always thank…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still…
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Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

0 test, Patient Advocacy, Survivorship, test, TEST
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 5) – A story of greenery, sun, adventure and Irrfan

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 5) – A story of greenery, sun, adventure and Irrfan

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the fifth part of a new series entitled:  Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions – A story of greenery, sun, adventure and IrrfanDuring my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 4) – A story of bikes, ponies, wisteria and Vitamin D 

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 4) – A story of bikes, ponies, wisteria and Vitamin D 

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the fourth part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions.During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 3) – An injection, hair cut and a broken tooth

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 3) – An injection, hair cut and a broken tooth

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  [caption id="attachment_17894" align="aligncenter" width="623"] Aged 18 - that's me on the left. My hair is currently as long as it's been since then![/caption]This is the third part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 2) – the bench walk

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 2) – the bench walk

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the second part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read. In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 1) – out of isolation

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 1) – out of isolation

Living with Neuroendocrine Cancer
It's been over a week since I came out of my self imposed isolation of 14 days after developing "a new and continuous cough". Although I'm much better now, nothing has really changed in that I'm sticking to my own property pretty much all of the time. In case you missed my 14 day self isolation diary - I compiled it here - click here to read.Since coming out of isolation, we've been for a couple of government mandated walks from our house (max 1 hour) - it's fairly easy to find empty streets and lanes around here, so we're quite lucky. I did notice people keeping a wide berth of each other - very sensible.In UK, we're worried about our Prime Minister, no nation likes their leader being ill…
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Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email "An unusual disposition of tumours" A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases for late diagnoses. Apart from the primary tumour invading nearby tissue/organs, the most common spread is the lymph nodes, these can take you from a localised Stage 1 to loco-regional Stages 2 and 3. Often the term distant spread infers metastatic disease (stage 4) to the liver but I had some lymph nodes 'misbehaving' much further away than that. After my first nuclear scan (In-111 Octreoscan) during my diagnostic workup in Jul-Aug 2010, two areas lit up - left axillary nodes (armpit) and…
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We Remember – A message of hope in the time of the Coronavirus!

We Remember – A message of hope in the time of the Coronavirus!

Inspiration
I really like this video because it covers the positives of the coronavirus crisis, despite the daily gloom. At the time of writing, it's clear things will get worse before they improve. However, this crisis will end sometime, hopefully soon; and we'll look back on this period with multiple emotions. Of course we will be sad about those who died and for the lives that were changed. But we will also look back fondly at how we dealt with these changes, the new ways of thinking, new outlooks, new friends, new relationships and new communities. Personally, I can't wait for this crisis to be a distant memory but we should all remember the positive things happening now and that will hopefully be maintained going forward. There will be new communities…
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My Self Isolation Diary – COVID-19

My Self Isolation Diary – COVID-19

Patient Advocacy
COVID-19 reminds me of some of the issues with Neuroendocrine Cancer e.g. is this a normal day to day cold/flu/chest issue or is it COVID-19?  At least COVID-19 is the number one awareness topic in the universe so people are very very aware.  Just as well because it has the potential to kill hundreds of thousands, perhaps millions of people.  It's only right that cancer patients take strict precautions because they should all at least be considered as an 'at risk' category and many will be on their national 'most vulnerable' lists (for example in the UK, read about that here).So when I started to cough and wheeze on Tuesday 17th March 2020, I was clearly concerned. On 19th March, I started to record my self isolation with daily posts…
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COVID-19 and Cancer Treatment and Surveillance

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or stopped in NET?Surgery: Can/should surgery be canceled or delayed?Liver-directed therapy: Should liver embolization be performed? Is one modality preferable to another in the context of the COVID-19 outbreak?Lutetium Lu177 DOTATATE PRRT: Should PRRT be delayed if not yet started? Should the next treatment plan be postponed if in the middle of the planned PRRT course?Iobenguane I 131: Should iobenguane I 131…
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Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship
OPINION. I guess many people are feeling pretty scared right now.  Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news.  I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal.  We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep.  I don't know about you but I would hate to have survived metastatic Cancer for the last 10 years only be taken out by a stupid tiny virus because I forgot to wash my hands. Thus why I intend…
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Coronavirus 19 (COVID-19): risks for cancer patients

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is not medical advice and should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation's guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.UPDATED 28 Mar 2020 - see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general…
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Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Diet and Nutrition
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following:Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.Article 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.Article 3 – ‘Gut Health’. This followed on from the first…
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Clinical Trial:  Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma,  Unknown primary, and Thymic Neuroendocrine Tumors

Clinical Trial: Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma,  Unknown primary, and Thymic Neuroendocrine Tumors

Clinical Trials
Excellent news for those who don't have Gastroenteropancreatic NETs (GEP-NETs). A trial of PRRT is being set-up for the less common types of NET including those with an unknown primary.  Using the DOTATOC radionuclide rather than the Lutathera model of using DOTATATE, this trial will cater for Pulmonary, Pheochromoctyoma, Paraganlioma, Unknown Primary and Thymic Neuroendocrine Tumours. Excel Diagnostics and Nuclear Oncology Center (EDNOC) announced today that its physician sponsored Investigational New Drug (IND) application to evaluate safety and efficacy of Lu-177 DOTATOC in adult subjects with Somatostatin receptor (SSTR)  expressing Pulmonary, Pheochromocytoma, Paraganglioma, Unknown primary, and Thymic Neuroendocrine Tumors (PUT-NET),  has received approval to proceed by USA Food and Drug Administration (FDA) and also charge authorization has been granted (IND#143631, NCT04276597). This IND is anticipated to start enrolling patients by…
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Oral Octreotide using RaniPill™

Oral Octreotide using RaniPill™

Clinical Trials
Rani Therapeutics, a leader in oral biologics, has announced positive results from the Phase I clinical study of its orally-delivered version of octreotide, Octreotide-RP, a drug used in the treatment of acromegaly and neuroendocrine tumors. The Phase I study successfully achieved both its primary and secondary endpoints, demonstrating the safety and tolerability of Octreotide-RP, the RaniPill™ loaded with octreotide, and high oral bioavailability of the biologic drug.  The Phase I clinical study of Octreotide-RP was conducted in Australia with 58 healthy adult volunteers. The test group was comprised of both male and female subjects aged 18 to 55. Of the 58 participants, 52 were treated with Octreotide-RP, while a control group of 6 participants was given an intravenous injection of an identical dose of octreotide. Results of the study demonstrated…
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Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment,…
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Neuroendocrine Cancer – Liver directed therapy

Neuroendocrine Cancer – Liver directed therapy

Treatment
Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well differentiated Neuroendocrine Tumours (NETs). Spread to the liver may occur from NETs of the foregut, midgut as well as hindgut. NET metastases are usually multiple and of varying size. In most cases both liver lobes are affected, but widespread (miliary) seeding throughout the…
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Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Inspiration, Patient Advocacy
This story is about my friend Kirsty. She lives with metastatic Pheochromocytoma, a type of Neuroendocrine Tumour (NET) of the adrenal glands - (read more here). She has an amazing blog which is not just for Pheochromocytomas or even just for Neuroendocrine Cancer patients and supporters, because she has not let her condition stop her from doing normal stuff and amazing stuff. The challenges she has faced, and still facing, are very similar to many cancer patients. Kirsty is actually one of the moderators in my private Facebook group, she found me and put herself forward to help out. My group international in compostion working 24/7, so her location in New Zealand was perfect, filling in the North America/Europe normal 'sleepy' time around 3am - 7am UK time. In 2012,…
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Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email sharing this could help someone 2019 has been quite a year and my blog views are the highest they have ever been.  They could have been even higher had I written more articles instead of resting on my laurels after reaching ONE MILLON total views in June of this year.  Will try harder in 2020! (edit - COVID changed those plans)Things are so hectic I might need to think about more resources for my website/blog going forward.  Much of the effort in 2019 has been directed in building up my private group, the fastest growing NET group on earth and based on current size and growth rate, it will soon…
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NETDetect: Earlier diagnosis of Neuroendocrine Cancer gets a boost

NETDetect: Earlier diagnosis of Neuroendocrine Cancer gets a boost

Awareness, Clinical Trials
[caption id="attachment_16474" width="640" align="aligncenter"] Dr Eugene Woltering - NET Specialist[/caption] It's well known that Neuroendocrine Cancer is difficult to detect and as a consequence, many people are not diagnosed until late stages. The difficulty in detection is not just focussed on the complexity of the disease but also the lack of understanding within the medical community who don't always see sufficient evidence to refer the person on to receive expensive testing and in some cases confirmatory and expensive imaging which may not show small tumours. Currently, there's no screening test for Neuroendocrine Cancer for the simple fact that it's not a high population disease and it's not a known killer. This development from well known NET Specialist Dr Eugene Woltering could help bridge that gap although some suspicion to utilise…
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Prognostics and Crystal Balls

Prognostics and Crystal Balls

Inspiration, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell! The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused.…
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Olivia Williams – Neuroendocrine Cancer (VIPoma)

Olivia Williams – Neuroendocrine Cancer (VIPoma)

Awareness
Well known UK actress Olivia Williams has been diagnosed with a functioning pancreatic NET called a VIPoma. She played Bruce Willis' wife in the blockbuster Sixth Sense in 1999. She is also known for her roles in TV dramas such as ITV's The Halcyon and American science fiction thriller series Counterpart.  And she was on the set in California when her biopsy result came though confirming the pNET.  The doctors, who I believe were from Cedars Sinai even said “It’s not pancreatic cancer, it might be a neuroendocrine tumour". She finally got surgery in Kings College London.  Read the Vogue article here.    So glad she finally got it sorted after 4 years (great story inside).  However, she is now an ambassador for Pancreatic Cancer - so once again we…
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“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy
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 and my large internet footprint leads them to me. 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, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again…
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Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed.  Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond. Double Toil If it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis.  At the same time, the tumours can still 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 - also delaying diagnosis.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux,…
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The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Edit:  September 2020.  I believe the flu shot is even more important in the era of COVID. This is an illness which typically spreads in autumn and winter. A major flu outbreak would not only overwhelm hospitals in the coming months (the so called "twindemic") but also likely overwhelm a person who might contract both at once.Another year, another flu shot. Since my cancer diagnosis, I've had one each year. To me it's really important protection even though I know it's not 100% effective, it's better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my immune system may be compromised and having got…
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Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials
What is PEN-221? Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to solid tumors.  These medicines are known as 'Pentarins'. PEN-221 is the lead candidate 'Pentarin' aimed at Neuroendocrine Cancer - PEN-221. Somatostatin receptor 2 (SSTR2) is frequently overexpressed on several types of solid tumors, including neuroendocrine tumors and small-cell lung cancer. Peptide agonists of SSTR2 are rapidly internalized upon binding to the receptor and linking a toxic payload to an SSTR2 agonist is a potential method to kill SSTR2-expressing tumor cells. PEN-221 is a conjugate consisting…
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Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials
What is ONC201? A company called Oncoceutics is developing a novel class of safe and effective cancer therapies called imipridones. Imipridones have a unique three-ring core structure and selectively target G protein-coupled receptors (GPCRs), the largest class of membrane receptors and a common target of approved drugs that are underexploited in oncology. Despite being historically uncommon as targets in oncology, GPCRs control an array of critical prosurvival and stress signaling pathways that are often dysregulated in human cancer to favor cancer cell survival and propagation. The ability of imipridones to target GPCRs with a high degree of selectivity represents a novel opportunity in oncology that generates remarkably safe and effective therapeutics. ONC201, the founding member of this novel class of therapies, is an orally active, safe, and selective antagonist of…
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The Other 5 E’s

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here.I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much many…
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The Case of Justice Ruth Bader Ginsburg vs Cancer

The Case of Justice Ruth Bader Ginsburg vs Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email UPDATE 18th SEPTEMBER 2020RIP Justice Ruth Bader GinsburgUPDATE 17 JULY 2020Justice Ruth Bader Ginsburg said Friday that she had had a recurrence of cancer but had been undergoing chemotherapy that had shown “positive results”.  Justice Ginsburg, who is 87, said she had begun a course of chemotherapy on May 19, after a periodic scan in February followed by a biopsy revealed lesions on her liver.  She also stated that "Immunotherapy" first essayed proved unsuccessful, but the chemotherapy course is yielding positive results. She said a scan this month showed the liver lesions had been significantly reduced and that she is tolerating chemotherapy well.  Justice Ginsburg did not say where the tumours…
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Clinical Trials – Surufatinib for Neuroendocrine Cancer

Clinical Trials – Surufatinib for Neuroendocrine Cancer

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Update: December 30, 2020 - The China National Medical Products Administration has approved surufatinib for the treatment of patients with non-pancreatic neuroendocrine tumors. Read more here.  In China, the drug is known as Sulanda.An extremely interesting drug in the pipeline which has been featured at ENETS, NANETS, ESMO and ASCO.  – Company plans to complete rolling submission in the first half of 2021 –– The pivotal Phase III SANET-ep trial demonstrated surufatinib reduced risk of progression or death by 67%, extending PFS of non-pancreatic NET patients with an acceptable risk/benefit ratio –– The pivotal Phase III SANET-p trial demonstrated surufatinib reduced risk of progression or death by 51%, extending PFS of pancreatic NET patients with…
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Cancer can kill but so can fake cures

Cancer can kill but so can fake cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer.  If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product. I was also interested to read a number of articles about various aspects of this modern phenomenon.  Firstly in the magazine Wired, a major media company was forced to take down some cancer therapy videos after someone pointed out they were not scientifically factual.  Not just patients who get fooled by these claims then? Much of the misinformation arrives via Facebook, and YouTube, two of the most commonly used social media tools. This article suggests a shockingly large…
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Pancreatic Neuroendocrine Tumours – surgical decisions

Pancreatic Neuroendocrine Tumours – surgical decisions

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Background I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma).Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that most pNETs are non-functional making diagnosis more difficult as there is little clinical suspicion to scan, but also results in more late diagnoses.Although biopsies are possible, mainly via endoscopic ultrasound or laparoscopy, it can still be difficult to reach.  In some cases biopsies are not done until after…
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Clinical Trials of PV-10 (Rose Bengal) for the treatment of Neuroendocrine Tumours (NET)

Clinical Trials of PV-10 (Rose Bengal) for the treatment of Neuroendocrine Tumours (NET)

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…
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New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

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

Clinical Trials, Living with Neuroendocrine Cancer
[caption id="attachment_15259" align="aligncenter" width="840"] see citation below[/caption] 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…
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LUTATHERA (PRRT) – NETTER 2 Clinical Trial for Grade 2/Grade 3 Neuroendocrine Neoplasms

LUTATHERA (PRRT) – NETTER 2 Clinical Trial for Grade 2/Grade 3 Neuroendocrine Neoplasms

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Brief SummaryThe NETTER-1 trials led to the approval of Lu177 (or Lutathera), more commonly known in the community as Peptide Receptor Radio Therapy (PRRT).  This led to an explosion of availability across the world but many gaps in service remain.Many PRRT spin off trials are in the pipeline looking at different types of PRRT, mainly using slightly different radionuclides and techniques.  However, NETTER-2 builds on the success of the approved version formally known as Lutathera.The aim of NETTER-2 is to determine if Lutathera in combination with long-acting octreotide prolongs PFS in GEP-NET patients with high proliferation rate tumors (G2 and G3), when given as a first line treatment compared to…
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Clinical Trial of Paltusotine for the Treatment of Neuroendocrine Tumours

Clinical Trial of Paltusotine for the Treatment of Neuroendocrine Tumours

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Crinetics Pharmaceuticals, Inc. (Nasdaq: CRNX), a clinical stage pharmaceutical company focused on the discovery, development, and commercialization of novel therapeutics for endocrine diseases and endocrine-related tumours.  They have a lead molecule, paltusotine (also referred to as CRN01941 for NET and more recently as CRN00808 for Acromegaly and NET), that may turn out to be best in class. Phase 2 testing for Acromegaly is on track to be completed in Q4 2020. Phase 3 trial likely in 2021 and if successful, they are hoping for FDA approval in 2023.  But it is already behind as FDA recently approved Chiasma's Mycapssa product earlier this year.  This article indicated paltusotine may be a…
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Neuroendocrine Neoplasms – High grade

Neuroendocrine Neoplasms – High grade

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email High Grade - the forgotten patient group?When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group.  Clearly all the aforementioned organisations support all patients regardless of grade, but it's true to say that the naming…
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Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

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

Clinical Trials, Living with Neuroendocrine Cancer
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…
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I’m not sick, I just have cancer

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 how I thought a Stage 4 cancer patient would feel and not even ill 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.…
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Rosacea – the NET Effect

Rosacea – the NET Effect

Awareness, Patient Advocacy
Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on my chin. After 18 years of the issue, my nose is slightly discoloured and more reddish than the rest of my face. Shortly after I started experiencing this issue, a…
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Neuroendocrine Cancer: No one gets it until they get it

Neuroendocrine Cancer: No one gets it until they get it

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then" - NO! 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…
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From dying to living, to hell and back

From dying to living, to hell and back

Awareness, Inspiration, Patient Advocacy
I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was "The shock effect never wears off".  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases). This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as 'Patient E'. I just felt that someone somewhere might learn something…
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“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

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

Inspiration, Living with Neuroendocrine Cancer
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…
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Letter from America

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer
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…
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Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Treatment
Proton pump inhibitors (PPIs) reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid related conditions such as: Esophageal duodenal and stomach ulcers NSAID-associated ulcer Ulcers Gastroesophageal reflux disease (GERD) Zollinger-Ellison Syndrome - ZES (note this is a syndrome associated with a functioning duodenal or pancreatic NET known as a Gastrinoma) They also are used in combination with antibiotics for eradicating Helicobacter pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum for eradicating…
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Clinical Trial: Lenvatinib Efficacy in Metastatic Neuroendocrine Tumors (TALENT)

Clinical Trial: Lenvatinib Efficacy in Metastatic Neuroendocrine Tumors (TALENT)

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Lenvatinib has just completed a Phase 2 trial in Gastrointestinal (GI) and Pancreatic Neuroendocrine Tumours.  The trial was sponsored by Grupo Espanol de Tumores Neuroendocrinos (Spanish NET scientific organisation) and the manufacturers.  A European venture with sites in Austria, Italy, Spain, UK.   Headline: The responses are better than Everolimus (Afinitor) and Sunitinib (Sutent). What is Lenvatinib? It is a type of targeted therapy known as a multikinase inhibitor. The brand name is 'LENVIMA'. These work by inhibiting multiple intracellular and cell surface kinases, some of which are implicated in tumour growth and metastatic progression of cancer, thus decreasing tumour growth and replication. A range of receptor kinases are involved in…
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Clinical Trial: Intra-arterial Lu177 (PRRT) for Neuroendocrine Cancer liver metastases (LUTIA)

Clinical Trial: Intra-arterial Lu177 (PRRT) for Neuroendocrine Cancer liver metastases (LUTIA)

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The treatment of liver metastasis is a common approach following a metastatic diagnosis or discovery of liver metastasis downstream via re-staging. In addition to surgery, there are several liver directed therapies available via embolization techniques. This comes in several flavours:1. Bland liver embolization - a minimally invasive technique which simply blocks the blood supply to the liver tumours in an attempt to reduce or kill those tumours. Sometimes called Hepatic Arterial Embolization or HAE.2. Chemotherapy liver embolization - as above but adds in some cytotoxic chemo to the mix. Sometimes called Trans Arterial Chemo Embolization or TACE.3. Radioembolization is a minimally invasive procedure that combines embolization and radiation therapy to…
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Clinical Trial SPARTALIZUMAB  – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trials, Treatment
PDR001 (anti-PD-1) is an investigational immunotherapy being developed by Novartis to treat both solid tumors and lymphomas (cancers of the blood).  It is currently being trialled on many cancers including Neuroendocrine.  It's brand name is SPARTLIZUMAB. How PDR001 works PDR001 is a type of immunotherapy, meaning that it acts by activating the body’s own immune system to recognize and fight cancer cells. Normally, an immune system cell called T-cells recognizes and kills infected or abnormal cells, including those that are cancerous. To prevent T-cells from accidentally damaging healthy and essential tissues, however several immune system checkpoints exist to inhibit, or block, them from going about this work. One example is the programmed cell death 1 (PD-1) pathway. Healthy cells produce and display a protein called programmed cell death ligand-1 or…
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