Ronny Allan - Living with Neuroendocrine Cancer - Page 12 of 15 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

01 Dec 2020

15 Comments

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid, Neuroendocrine cancer

Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million! Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall…

01 Dec 2020

By Ronny Allan

0 Comments

Ronny Allan Newsletter 1st December 2020

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy November with a look ahead for December and beyond. October 2020 was manic, but November was just as manic but in a different way. It was also a better month in terms of growth (increased viewing statistics etc).In UK. most of November had been under new COVID restrictions but due to the weather this time of year, I was not able to exploit that as much as the first lockdown in April/May. Despite that, I'm built…

15 Nov 2020

By Ronny Allan

4 Comments

If it’s not raining, it’s not training! (part 2)

Inspiration, SurvivorshipAnxiety, Cancer survivor, Quality of LIfe (QoL)

As someone who was born and raised in the Scotland, and lived most of my life in the UK, I'm no stranger to inclement weather. In my 29 years years in the military, the weather was no excuse to do nothing, whether it was training or the real thing. They gave us wet weather clothing after all! There is a saying in the UK army and it goes like this "If it's not raining, it's not training". In classic British pragmatism, it decodes to "raining is normal so get on with it". In fact, one of my oldest army friends…

01 Nov 2020

By Ronny Allan

1 Comment

Ronny Allan Newsletter 1st November 2020

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy October with a look ahead for Nov/Dec. September 2020 was manic but October, although slightly less busy, has been a mix of activity, much of it devoted to personal pursuits. The end of October in UK has arrived and an announcement of another nationwide COVID lockdown. his will keep me low profile in November but as I've said before, I'm built for lockdowns as long as I can get a walk or cycle in the woods…

30 Oct 2020

By Ronny Allan

9 Comments

Piss off cancer – I’m 67.5

Awareness, InspirationAdvanced neuroendocrine cancer, Cancerversary, Prognosis

I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…

22 Oct 2020

By Ronny Allan

2 Comments

Early diagnosis of late stage cancer!

AwarenessAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, NET syndromes, Serotonin

OPINION: What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon…

09 Oct 2020

By Ronny Allan

5 Comments

Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Awareness, InspirationNeuroendocrine carcinoma (NEC), Peritoneal carcinomatosis

Paul Hunter, three-time Masters snooker champion was just 27 when he fell victim to Neuroendocrine Cancer at the peak of his powers and popularity. At just 25, he'd won the third Masters title, a feat which, at the time, had been achieved by only two other players in the world. He was dubbed the "Beckham of the Baize" because of his chiselled good looks and long, blond hair (a reference to famous footballer David Beckham). The Masters Trophy is one of the prestigious titles in the international snooker world and it was a belated honour that the trophy was renamed…

30 Sep 2020

By Ronny Allan

0 Comments

Ronny Allan Newsletter 1st October 2020

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email September 2020 has been another very interesting month and I'm still trying to work out how I've been able to pack it all into 30 days. It's a month full of personal 'cancerversaries', things that have inspired me to do more and signs of normal life returning (well at least a new normal). The newsletter is divided into a number of sections: 1. External news of interest. A shortlist of things I picked up on my social media travels. 2.…

18 Sep 2020

By Ronny Allan

1 Comment

Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

Clinical Trials and Research, TreatmentLanreotide, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

CLARINET FORTE is a prospective single-arm, open-label, exploratory, international Phase II study to explore the efficacy and safety of an increased Somatuline® Autogel® (lanreotide) dosing frequency (120 mg every 14 days) in patients with metastatic or locally advanced unresectable pancreatic NETs or midgut NETs, with centrally-accessed progression within the last two years while on a standard lanreotide regimen (120 mg every 28 days) for more than 24 weeks.Data announced in September 2020 at the 2020 European Society for Medical Oncology (ESMO), indicated the phase 2 results support a clinically meaningful benefit to a population of patients with high unmet medical need…

12 Sep 2020

By Ronny Allan

1 Comment

Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trials and ResearchImmunotherapy, Merkel cell carcinoma, Monoclonal antibodies, Neuroendocrine tumour (NET), Small cell lung cancer (SCLC), Targeted therapy, Tidutamab

UPDATE: 13th July 2022Xencor halted this clinical trial due to disappointing results. Click here to read moreXencor, a clinical-stage biopharmaceutical company developing engineered monoclonal antibodies for the treatment of cancer and autoimmune diseases, today announced that initial data from its ongoing Phase 1 dose-escalation study of tidutamab (XmAb®18087), an SSTR2 x CD3 bispecific antibody, in patients with neuroendocrine tumors (NETs) will be presented during the upcoming North American Neuroendocrine Tumor Society’s 2021 Multidisciplinary NET Medical Virtual Symposium (note - it was also presented at NANETS 2020). What are monocloncal antibodies? See here About Tidutamab Monoclonal antibodies are laboratory-produced molecules engineered to…

10 Sep 2020

By Ronny Allan

4 Comments

“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

Patient AdvocacyNeuroendocrine cancer, Pancreatic cancer, Pancreatic NET (PanNET)

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A lot had been written about Steve Jobs, some good, some bad, some inaccurate - the latter is mostly about the cancer he had. I came across this clip published by an Apple Mac publication and it contained a video of Steve the day he returned to Apple after having a liver transplant and had recovered from the procedure. In it he said "I'm vertical" in classic Jobs language and positive outlook. Watch the clip here:https://youtu.be/BNv2lH225Ko The article is a…

05 Sep 2020

By Ronny Allan

0 Comments

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine CancerBrain serotonin, Dopamine, Neuroendocrine tumour (NET), Oxytocin, Peripheral Serotonin, Serotonin

One of the featured pictures below is a sunflower from 2015, something I planted with my own hands, and it grew taller than me (not difficult), even taller than my garden fence (more difficult). Of course, I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it. Nonetheless, I still felt a remarkably close association with the outcome! It made me happy just to look at it! My most liked Facebook posts in 2020 (the year of COVID) related to plant…

02 Sep 2020

By Ronny Allan

0 Comments

1.4 million thanks!

Awareness, Patient AdvocacyNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just registered the 1,400,000th view of my blog site. So grateful for the support!Last 12 posts going back to 28th June - feel free to read and share. Each one has a share button for Facebook, Twitter, Pinterest, WhatsApp and Email (as has the entire post).You can also catch up on other points of interest and some of my lockdown activities on my Facebook pages Ronny Allan and Neuroendocrine CancerMany thanksRonny

31 Aug 2020

By Ronny Allan

2 Comments

RonnyAllan.NET – Newsletter 1st September 2020

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email External news of interestNot surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here's a few items I picked up during August from my google alerts, from direct contact or from twitter (the latter is a key source for me to hear about what's happening).1. The Middle East Neuroendocrine Tumor Society (MENETS) will hold their first World NEN Lives 2020 Congress this September 23-24 virtually via Zoom. This congress…

01 Aug 2020

By Ronny Allan

0 Comments

RonnyAllan.NET – Newsletter 1st August 2020

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email External news of interest Not surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here's a few items I picked up during July from my google alerts or from twitter (a key source for me to hear about what's happening). 1. 64Cu DOTATATE PET scans. This is an alternative scan that's been in use in Europe but is undergoing trials in US - it has some advantages in particular…

28 Jul 2020

By Ronny Allan

3 Comments

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect SeriesAcromegaly, Cushing's syndrome, Ectopic Cushing’s syndrome (ECS), Hypercalcemia, Hyperglycemia, Hypoglycemia, Neurologic paraneoplastic syndromes, Paraneoplastic syndromes, Syndrome of inappropriate antidiuretic hormone secretion (SIADH)

Although several hypotheses have been proposed regarding the pathogenesis of Paraneoplastic Syndromes (PNS), the precise mechanism that leads to the development of PNS remains largely unknown. In simple terms, pathogenesis means "the manner of development of a disease". Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms. Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios. I eventually filtered out papers based on the expertise of the authors and the common threads running in each…

26 Jul 2020

By Ronny Allan

7 Comments

10 years, I’m still here

Awareness, InspirationDiagnosis, Neuroendocrine cancer

I finally made 10 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my…

24 Jul 2020

By Ronny Allan

10 Comments

Don’t be cavalier with a cancer diagnosis

Awareness, InspirationBiopsy, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. In fact it happened on 24th July 2010, 10 years to the date this post was published. (Spoiler alert - I'm still here).I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight,…

17 Jul 2020

By Ronny Allan

4 Comments

After lockdown – the new normal is not normal

InspirationAnxiety, Cancer, COVID-19, Neuroendocrine cancer

The new normal is not normal This new normal just isn't normal! I'm lucky to have beautiful forests to my east and west but to my south is probably the best beach coastline in UK. We decided to walk along a section of that award winning 7 mile bay. But we went via a shop. I had to return something purchased shortly before lockdown and like most shops which shut, this one extended the returns period due to COVID-19. The shop was a big one and easy to distance, but the preparations were very good indeed. I donned a face…

13 Jul 2020

By Ronny Allan

4 Comments

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Episode 12 of my Living under COVID-19 series. A story of surviving, cycling, Scottish holiday memories including the 'Fairy Pools'7th JuneNational Cancer Survivors Day was on 7th June. It's a celebration of life and if you're reading this, you're surviving. Share and let people know you're still here. Or just tell me below!I'm still here!#NationalCancerSurvivorsDayA wee story to finish off #NationalCancerSurvivorsDay22 miles of cycling today to celebrate life. A story about woods, animals, a long straight road with an interesting history and a bombing range.We had already cycled and walked parts of this route but our new e-bikes mean we can go…

30 Jun 2020

By Ronny Allan

0 Comments

RonnyAllan.NET – Newsletter 1st July 2020

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Coping with lockdownDuring June, I decided I continued to be active outside despite the fact I see myself as someone at risk, not just because of the Neuroendocrine Cancer but also due to a history of chest infections and mild asthma. Mental health can be as important as physical health in times of stress and anxiety so I took to the outdoors to tell my story of how I was coping. Of course the outdoors is also a garden (yard)…

28 Jun 2020

By Ronny Allan

0 Comments

SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

Clinical Trials and ResearchGa68 PET/CT, Ga68-DOTA-JR11, Ga68-DOTATATE, JR11, Neuroendocrine cancer, PRRT, Somatostatin receptors (SSTR), SSTR-PET, Theranostics

Headline - 68Ga-DOTA-JR11 was found to detect significantly more liver lesions than 68Ga-DOTATATE; however, 68Ga-DOTATATE detected more bone lesions than 68Ga-DOTA-JR11. Although it had been in trial use for some years in Europe and elsewhere, the formal approval of 68Ga-DOTATATE has led to an increase in the development of other radionuclides, some in conjunction with therapeutic options (i.e. PRRT) making a 'theranostic' approach to diagnosing, treating and surveillance Neuroendocrine Cancer patients with somatostatin receptor positive tumours. I also wrote last year about another option called 64Cu, something already available in Europe, in particular Denmark. In another development which has been running…

26 Jun 2020

By Ronny Allan

0 Comments

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 11 of my Living under COVID-19 series. A story of Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020 Still recovering from the long walk .... if you missed it it's here. We have another 3 or 4 days of hot weather so it's bikes again soon. Today my Facebook memory reminded me of finishing our 84 mile walk along Hadrian's Wall on 31st May 2014. We were so happy and relieved to finish -…

24 Jun 2020

By Ronny Allan

0 Comments

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Multi tyrosine kinase inhibitors (TKIs), Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, Sunitinib (Sutent), Targeted therapy, Vascular endothelial growth factor (VEGF)

Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI). You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular…

22 Jun 2020

By Ronny Allan

0 Comments

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Clinical trial, Everolimus, Mammalian target of rapamycin (mTOR) inhibitor, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Targeted therapy

What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down. The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer. The drug is administered in oral form (tablet). The recommended dose for AFINITOR®…

19 Jun 2020

By Ronny Allan

0 Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Episode 10 of my Living under COVID-19 series. A story of the 'Wall', Swans, Dundee and New Forest History26th May 20206 years ago today, Chris and I set off an a 6 day hike across the 2000 year old world heritage site of Hadrian's Wall in northern England. It was an experience we'll never forget, not just for the long 84 mile slog but the natural beauty, the interesting places we visited and the people we met. We were raising funds for the local NET guys PLANETS Charity - co-founded by my surgeon (Neil Pearce) and interventional radiologist (Brian Stedman) and brilliantly…

18 Jun 2020

By Ronny Allan

1 Comment

My interview with ITM – I’m still here!

Awareness, Clinical Trials and Research, Patient Advocacy177Lu-Edotreotide (Solucin®), Clinical trial, COVID-19, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Peptide receptor radionuclide therapy (PRRT)

Facebook X Pinterest WhatsApp Email I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT). The company is formally known as ITM Isotopen Technologien München. One of their pipeline developments is 177Lu-Edotreotide in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET). The development is via the COMPETE Phase III Clinical Trial which is being conducted worldwide in 11 countries at 33 sites and is open for recruitment. I actually wrote about this trial after attending a workshop at the…

09 Jun 2020

By Ronny Allan

6 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 9) – a story of cream teas, peaks and blue sky

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 9 of my Living under COVID-19 series. A story of cream tea, peaks, blue sky and more peaks! 19th May 2020 Figure of eight bike ride yesterday around the outskirts of my town. 9 miles (still feeling the 23 miles from Saturday!). No photos, just a quick spin session. However, one of those Facebook memories came up from last year where we visited a nice town called Brockenhurst in the New Forest. Lovely little place smack bang in the…

01 Jun 2020

By Ronny Allan

2 Comments

RonnyAllan.NET – Newsletter 1st June 2020

Newsletters

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Newsletters have returned! I ceased publication of monthly newsletters over a year ago, mainly because they were time consuming to compile and the impact was less then my average post in terms of feedback. However, since going into COVID-19 lockdown, I've given that some more thought. Going forward, I'll be sending you out a newsletter each month including an email version as soon as I can get my mailing system software up and running (I've been busy during lockdown!) Coping…

28 May 2020

By Ronny Allan

0 Comments

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

SurvivorshipCOVID-19, 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…

24 May 2020

By Ronny Allan

0 Comments

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

SurvivorshipCOVID-19, Neuroendocrine cancer

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…

17 May 2020

By Ronny Allan

0 Comments

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

SurvivorshipCOVID-19, Neuroendocrine cancer

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…

13 May 2020

By Ronny Allan

2 Comments

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

Living with Neuroendocrine CancerCOVID-19

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 Irrfan 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…

11 May 2020

By Ronny Allan

2 Comments

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

Living with Neuroendocrine CancerCOVID-19

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,…

04 May 2020

By Ronny Allan

1 Comment

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

Living with Neuroendocrine CancerCOVID-19

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

25 Apr 2020

By Ronny Allan

0 Comments

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

Living with Neuroendocrine CancerCOVID-19

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,…

23 Apr 2020

By Ronny Allan

2 Comments

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

Living with Neuroendocrine CancerCOVID-19

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…

01 Apr 2020

By Ronny Allan

1 Comment

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

InspirationCOVID-19, Neuroendocrine cancer

This post was generated at the height of the pandemic and is not medical advice, moreover, it 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. 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…

26 Mar 2020

By Ronny Allan

8 Comments

My Self Isolation Diary – COVID-19 2020

Inspiration, Patient AdvocacyCOVID-19

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.So, when I started to cough and wheeze on…

21 Mar 2020

By Ronny Allan

2 Comments

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, TreatmentCoronavirus, COVID-19, Neuroendocrine cancer

This post was generated at the height of the pandemic and is not medical advice, moreover, it 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. 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…

13 Mar 2020

By Ronny Allan

1 Comment

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

Patient Advocacy, SurvivorshipAnxiety, Cancer, COVID-19, Neuroendocrine cancer

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…

09 Mar 2020

By Ronny Allan

5 Comments

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

Patient Advocacy, SurvivorshipCancer, Coronavirus, COVID-19, Neuroendocrine cancer

This post was generated at the height of the pandemic and is not medical advice, moreover, it 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…

02 Mar 2020

By Ronny Allan

0 Comments

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

Diet and NutritionDiet, Exocrine pancreatic insufficiency, Ileum, Ketogenic diet, Malabsorption, Neuroendocrine cancer, Nutrition, Pancreatic enzyme replacement therapy (PERT), Supplements, Zinc

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.…

25 Feb 2020

By Ronny Allan

1 Comment

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 and ResearchBronchopulmonary Neuroendocrine Neoplasms (BP NEN), Cancer of unknown primary (CUP), DOTA-TOC, Lu-177, Neuroendocrine carcinoma (NEC), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Somatostatin receptors (SSTR), Thymic NEN

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…

09 Feb 2020

By Ronny Allan

3 Comments

Oral Octreotide using RaniPill™

Clinical Trials and ResearchAcromegaly, Clinical trial, Neuroendocrine cancer, Octreotide, Octreotide-RP, Somatostatin analogues

Credit: Rani Therapeutics Update 21st March 2022 Preclinical data demonstrates new RaniPill™ HC (High Capacity) delivered 500%-plus higher payloads than current RaniPill™ capsule. Up to 20mg payload has the potential to unlock more than 50 additional biologics for internal development. Update 4th May 2021 According to Fierce Biotech, Rani Therapeutics has secured $69 million in new funding to move forward with the manufacturing and clinical testing of its “robotic pill”—a small, swallowable capsule that promises to shepherd more delicate drugs past the stomach before releasing them into the bloodstream. The pill aims to make it easier for a patient to…

05 Jan 2020

By Ronny Allan

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Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Inspiration, Patient AdvocacyPheochromocytoma

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 that 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 and amazing stuff. The challenges she has faced and still facing, are very similar to many cancer patients. Kirsty was for a while, one of the moderators in my private Facebook group, when she found me and put herself forward to help…

30 Dec 2019

By Ronny Allan

0 Comments

Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

AwarenessNeuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

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…

11 Dec 2019

By Ronny Allan

1 Comment

NETDetect: Earlier diagnosis of Neuroendocrine Cancer gets a boost

Clinical Trials and ResearchClinical trial, Metastatic Neuroendocrine Cancer, NETDetect

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.…

17 Nov 2019

By Ronny Allan

2 Comments

Prognostics and Crystal Balls

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Oncologist, Prognosis

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,…

16 Nov 2019

By Ronny Allan

9 Comments

Olivia Williams – Neuroendocrine Cancer (VIPoma)

AwarenessFunctional tumour, Pancreatic cancer, Pancreatic NET (PanNET), VIPoma

Well known UK actress Olivia Williams was diagnosed with a functioning pancreatic NET called a VIPoma in 2018. 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 pancreatic NET. In 2022, she appeared in The Crown as Camilla Parker Bowles and in the past she had a cameo in Friends. The doctors, who I believe were from Cedars Sinai…