Neuroendocrine cancer Archives

26 Jun 2020

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

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

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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

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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

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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…

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…

28 May 2020

By Ronny Allan

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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

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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

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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…

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…

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

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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.…

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…

30 Dec 2019

By Ronny Allan

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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…

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,…

09 Nov 2019

By Ronny Allan

3 Comments

“Please find something wrong with me”

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pheochromocytoma

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…

31 Oct 2019

By Ronny Allan

9 Comments

Neuroendocrine Cancer: Double, Double Toil and Trouble

AwarenessAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Thorson-Bioerck syndrome

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…

12 Oct 2019

By Ronny Allan

3 Comments

The Flu shot – it’s not just about you

Patient Advocacy, SurvivorshipCancer survivor, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Vaccine

An Opinion Post Edit: October 2024. I continue to believe the flu shot is even more important in the era of COVID-19. The flu is an illness that typically spreads in autumn and winter. A major flu outbreak could potentially overwhelm a person who might contract both at once or overlap. In fact, in Dec 2023 after contracting my second infection of COVID-19, I had a back to back regular chest infection needing antibiotics. OK, I still succumbed to both even after having both shots in that year, but who knows what would have happened without them. Like last year, I…

24 Sep 2019

By Ronny Allan

1 Comment

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Carcinoid tumour, Clinical trial, Incurable cancer, Medullary thyroid cancer (MTC), Merkel cell carcinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, PEN-221, Pheochromocytoma, Small cell lung cancer (SCLC), Somatostatin receptors (SSTR)

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…

09 Sep 2019

By Ronny Allan

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

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Carcinoid tumour, Clinical trial, Dopamine receptors, G protein-coupled receptors (GPCR), Hypertension, Incurable cancer, Leukaemia (US Leukemia), Lymphoma, Metastatic Neuroendocrine Cancer, Multiple myeloma, Neuroendocrine cancer, Neuroendocrine tumour (NET), ONC201, Paraganglioma, Pheochromocytoma, Solid tumour

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…

24 Aug 2019

By Ronny Allan

1 Comment

The Case of Justice Ruth Bader Ginsburg vs Cancer

AwarenessColon cancer, Lung Cancer, Neuroendocrine cancer, Pancreatic cancer

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…

29 Jul 2019

By Ronny Allan

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Surufatinib for Neuroendocrine Cancer

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Biliary tract cancer, Carcinoid tumour, Clinical trial, Colony stimulating factor-1 receptor (CSF-1R), Fibroblast growth factor receptor (FGFR), Incurable cancer, Mammalian target of rapamycin (mTOR) inhibitor, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Sulfatinib, Surufatinib, Tyrosine kinase inhibitor (TKI), Vascular endothelial growth factor (VEGF)

UPDATE 2nd May 2022.US FDA did not approve. Commentary from Healthcare New company Global Data. "On 2 May, the US Food and Drug Administration (FDA) rejected HUTCHMED’s new drug application (NDA) for its lead candidate, Sulanda (surufatinib), for the treatment of advanced neuroendocrine tumours (NETs). Issues pertaining to trial populations were raised in a complete response letter (CRL) and GlobalData expects this case to have wide implications for the whole field of oncology therapeutics.China-based HUTCHMED received approval for its multi-receptor tyrosine kinase inhibitor Sulanda in China for the treatment of pancreatic and extra-pancreatic NETs in June last year and December 2020,…

18 Jul 2019

By Ronny Allan

5 Comments

Pancreatic Neuroendocrine Tumours – to cut or not to cut

TreatmentAdvanced neuroendocrine cancer, ATRX, DAXX, Liquid biopsy, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Pancreatic cancer, Pancreatic NET (PanNET), pNET, Quality of LIfe (QoL), Surgery

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, they can still be difficult to…

08 Jun 2019

By Ronny Allan

0 Comments

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

Clinical Trials and Research, Living with Neuroendocrine CancerGa68 PET/CT, Ga68-FAPI PET/CT, Neuroendocrine cancer, Theranostics

Updated 17th March 2023 When I wrote about this new PET in June 2019, it was for interest only, but I curiously noted the existence of "NET" in the list of 28 cancers. It is designed to compete with FDG PET. The study comes from a joint China/Singapore initiative. This update now confirms it could be more efficient than FDG for those types of cancer where FDG is the optimum imaging. Headline "A new radiotracer, 68Ga-FAP-2286, has been found to be more effective than the most commonly used nuclear medicine cancer imaging radiotracer, 18F-FDG. In a study published in the March issue…

04 Jun 2019

By Ronny Allan

4 Comments

LUTATHERA (PRRT) – Clinical Trial for Grade 2/Grade 3 Patients Advanced GEP-NET (NETTER-2)

Clinical Trials and Research, TreatmentClinical trial, Lutathera, NETTER-1, NETTER-2, Neuroendocrine cancer, PRRT, Somatostatin receptors (SSTR)

FINAL TRIAL RESULTS PUBLISHED 19TH JAN 2024Read more by clicking here.Original blog below. Brief Summary- The 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…

28 Feb 2019

By Ronny Allan

6 Comments

From dying to living, to hell and back

Awareness, Inspiration, Patient AdvocacyMisdiagnosis, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Prognosis

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,…

22 Feb 2019

By Ronny Allan

0 Comments

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

Inspiration, Living with Neuroendocrine CancerNeuroendocrine cancer, Survivorship

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…

05 Feb 2019

By Ronny Allan

1 Comment

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

The NET Effect Series, TreatmentAcid reflux, Antiacids, Axid (Nizatidine), Barrett's Esophagus, Carcinoid tumour, Chromogranin A (CgA), Cimetidine, Dexilent, Dexlansoprazole, ENETS, Esomeprazole magnesium, Famotidine, Gastric NET, Gastrin, Gastrinoma, Gastroesophageal reflux disease (GERD), H2 blockers, H2 receptor antagonist (H2RA), Hormones, Hypergastrinemia, Lansoprazole, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nexium, Nizatidine, Nutrition, Omeprazole, Omeprazole and sodium bicarbonate, Pancreastatin, Pantoloc control, Pantoprazole, Pepcid (Famotidine), Prevacid (Lansoprazole), Prilosec (Omeprazole), Proton pump inhibitors (PPI), Protonix (Pantoprazole), Quality of LIfe (QoL), Rabeprazole (Aciphex), Ranitidine (Zantac), Stomach ulcer, Tagamet, Vimovo, Zantac, Zollinger-Ellison Syndrome

What are Proton pump inhibitors (PPIs)? Proton pump inhibitors (PPIs) are among the most commonly used medications in the world. They 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…

16 Jan 2019

By Ronny Allan

0 Comments

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

Clinical Trials and ResearchLiver directed therapy, Liver embolization, Liver metastases, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), PRRT, Transarterial embolizaton (TAE)

Neuroendocrine Cancer - Intra Arterial - situated or occurring within, administered into, or involving entry by way of an artery.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…

03 Jan 2019

By Ronny Allan

1 Comment

Breath test with the goal of detecting multiple cancers – ready to start trials

Clinical Trials and ResearchDiagnosis, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pancreatic cancer, Prostate Cancer, Stomach cancer

While it's a long way off becoming reality, this is quite an exciting clinical trial. I have no idea if it will pick up Neuroendocrine disease but initially, patients with suspected oesophageal and stomach cancers will be asked to try the test. Later it will be extended to include prostate, kidney, bladder, liver and pancreatic cancers. It's possible that Neuroendcorine tumours in these locations might be picked up or at least show up some abnormality that triggers further checks. The fact that Cancer Research UK is involved gives me some confidence as they tend to back the strong horses. I…

30 Nov 2018

By Ronny Allan

0 Comments

RonnyAllan.NET – Community Newsletter Covering November 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for November 2018 NET News 1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms. My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA. I almost got to my 1 million 'reach' on twitter in ONE WEEK straddling NET Cancer Day (see below) - just a wee Scottish guy with a less common disease and…

21 Nov 2018

By Ronny Allan

10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor, Carcinoid syndrome, Diabetes, Hypothyroidism, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Surgery

I have a lot to be thankful for The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…

01 Nov 2018

By Ronny Allan

0 Comments

RonnyAllan.NET – Community Newsletter Covering October 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for October 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium took place last month and I constructed an article of several important outputs. One day I might make it there, been to ENETS twice. Would love to attend UKINETS but they don't seem very 'patient' friendly. 2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com. The audience was a mix of…

30 Oct 2018

By Ronny Allan

9 Comments

Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

AwarenessCarcinoid crisis, Carcinoid syndrome, Desmoplasia, Gastrinoma, Glucagonoma, Hedinger syndrome, Hormones, Incurable cancer, Insulinoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, PPoma, Serotonin, Somatostatinoma, Thorson-Bioerck syndrome, Vasoactive intestinal peptide (VIP), Verner-Morrison syndrome, VIPoma, Whipple's triad, Zollinger-Ellison Syndrome

It’s a difficult disease to diagnose, e.g. many people struggle with undiagnosed syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Many continue to struggle after. They hide in plain sight – sometimes the syndromes can provide clues ……… but they can still fool your doctors. Let's change that with more awareness which can lead to earlier diagnosis. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In…

20 Oct 2018

By Ronny Allan

1 Comment

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

General, Humour, Living with Neuroendocrine Cancer, Patient AdvocacyNeuroendocrine cancer

I enjoyed reading "8 rules on how to talk to a cancer patient" because I think much of it is written with 'tongue in cheek'. Great title! In UK we might even spell the word 'twit' slightly differently (UK people will get it!). Some of the rules are directed at doctors and I'm sure some doctors will laugh (if you're a doctor and you didn't laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with. Personally I try to balance my reactions to not come over as…

08 Oct 2018

By Ronny Allan

5 Comments

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipBlood glucose, Diabetes, HbA1c, Lanreotide, Neuroendocrine cancer

There's a Brit saying known as "on your bike" (sometimes colloquially called "on yer bike"). It basically means "go away and stop bothering me" but there are other definitions including some 'Anglo-Saxon' versions (I won't repeat those here!) When I moved to my current home in 2012, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year. A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use. In fact, Chris got a new one out of the…

01 Oct 2018

By Ronny Allan

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RonnyAllan.NET – Community Newsletter Covering September 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for September 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium kicks off in a few days. I'm hoping to bring you news from the event (remotely, I won't be there) and perhaps a summary in next month's newsletter. 2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I've actually been ahead of the game for over a year since I found out this was coming and it's reflected in my 18 month old post on Staging and Grading.…

31 Aug 2018

By Ronny Allan

0 Comments

RonnyAllan.NET – Community Newsletter Covering August 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for August 2018 NET News Several headlines covering the past month: 1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as 'Pancreatic Cancer' mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle…

30 Aug 2018

By Ronny Allan

2 Comments

Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment111In-DTPA-D-Phe1, 177Lu-Edotreotide (Solucin®), 212Pb-AR-RMX, 64Cu-DOTATATE, Advanced neuroendocrine cancer, Carcinoid tumour, Ga68 PET/CT, Ga68-DOTATOC, Generator (radionuclide), Indium 111-pentetreotide, NETSPOT, Neuroendocrine cancer, Octreotide, Octreotide scan, PRRT, Somatostatin receptors (SSTR), SPECT

Updated Jan 2026What is 64CU dotatate It’s a high‑resolution PET tracer for imaging somatostatin‑receptor–positive neuroendocrine tumours (NETs), offering better lesion detection, longer imaging windows, and lower positron energy than 68Ga‑labelled agents. It consistently produces high tumour‑to‑background contrast and often finds additional metastatic sites missed by older SPECT agents like 111In‑octreotide. 🧬 64Cu‑DOTATATE vs 68Ga‑DOTATATE A clear, patient‑friendly comparison Both scans are excellent for finding neuroendocrine tumours (NETs). They work in the same basic way: a tracer attaches to somatostatin receptors on NET cells, and a PET/CT scanner shows where those cells are. The differences mainly relate to image clarity, timing,…

30 Jul 2018

By Ronny Allan

8 Comments

RonnyAllan.NET – Community Newsletter JULY 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for July Personal News Another unusual month, after a bizarre June. The chest infection has gone but still awaiting results of an x-ray to confirm. July was supposed to be partly holiday but that was cancelled due to illness. The chest infection caused a 4kg weight loss and only half of this has returned to date. I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public…

03 Jul 2018

By Ronny Allan

4 Comments

Clinical trial of 177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors

Clinical Trials and Research177Lu-DOTA-EB-TATE, Albumin, Ga68 PET/CT, Lutathera, National Institutes of Health, Neuroendocrine cancer, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Somatostatin analogues

Update June 2026 The phase 1 dose-escalation and dosimetry study, conducted in 81 patients with gastroenteropancreatic neuroendocrine tumors, found that EBTATE achieved approximately eight-fold higher tumor uptake in patients compared with conventional (Lu-177)-DOTATATE, with no kidney toxicity observed at one-year follow-up, according to the company. The data suggest meaningful clinical responses may be achievable after only two treatment cycles, using approximately 12.5% of the cumulative radioactivity required for standard peptide receptor radionuclide therapy (PRRT), MTTI said. Update April 2023 There is now an interventional Phase 1 clinical trial of this PRRT variant happening in Memorial Sloan Kettering Cancer Center, New…

02 Jul 2018

By Ronny Allan

5 Comments

RonnyAllan.NET – Community Newsletter JUNE 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for June For the first time in 3 years, I didn't write any new articles in a single month (other than the monthly newsletter). This was due to a prolonged chest infection from which I'm still recovering. I'm so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss…

07 Jun 2018

By Ronny Allan

5 Comments

RonnyAllan.NET – Community Newsletter May 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Summary for May Different type of intro to my newsletter as it's late due to unexpected illness. In some ways, what happened in May is possibly connected. I had quite a bit of work to do for a 'Patients Included' event in May in Berlin. I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer. I arrived back exhausted and turned my attention to another two things - a patient presentation to the…

31 May 2018

By Ronny Allan

17 Comments

All you need to know about Somatostatin Receptor PET/CT Scans for Neuroendocrine Tumours

Treatment64Cu-DOTATATE, CT scan, Degenerative bone disease, Detectnet, Ga68 PET/CT, Ga68-DOTANOC, Meningioma, NETSPOT, Neuroendocrine cancer, Octreotide scan, Osteoblastic activity, Overdiagnosis, Pancreatic uncinate process, Physiological uptake, Radioligand, Radioligand therapy, Radionuclide, SEER, SomaKit TOC, Splenosis, Splenunculus, SSTR-PET, Surveillance, Vertebral haemangioma

Cancer is a growth industry ...literally! More people are being diagnosed than ever before. Fortunately, more people are surviving than ever before. This is against a backdrop of better awareness, better screening in the big population cancers, and to a certain extent better diagnostic tools, all of which is leading to earlier diagnosis. So how does this affect Neuroendocrine Cancer? According to the latest SEER database figures for Neuroendocrine Cancer, one reason for the 7 fold increase in incidence rates since the 1970s is all of those things above including better diagnostics. This has led to a revised set of…

30 Apr 2018

By Ronny Allan

9 Comments

RonnyAllan.NET – Community Newsletter April 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Headlines 1. Patients Included. I'm a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I'm therefore pleased to have been listed as a Patients Included accredited site providing further EXTERNAL awareness opportunities - read about this here. 2. I've accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) - It also publishes a magazine called Current Oncology which is Medline listed. This is not…

11 Apr 2018

By Ronny Allan

3 Comments

Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid tumour, Everolimus, Incurable cancer, Metastatic Neuroendocrine Cancer, mTOR inhibitor, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Sapanisertib

Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body. What is Sapanisertib? Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth. In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs. It is also being tested in a number of different advanced cancers, including bladder, kidney, breast,…

03 Apr 2018

By Ronny Allan

2 Comments

RonnyAllan.NET – Community Newsletter March 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Headline for the period of March 2018 is reaching a milestone of half a million blog views. Yay ...... Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I'd been sponsored by INCA. Fortunately I had prepared the post earlier and was able to spread the news in a few clicks. I picked up some great information at this conference which I'm feeding into my articles so you get the best and latest thinking. Here's a couple of pictures of me with famous NET specialists. …

16 Mar 2018

By Ronny Allan

5 Comments

Irrfan Khan

AwarenessHigh grade neuroendocrine neoplasm (NEN), Neuroendocrine cancer, Neuroendocrine tumour (NET)

‘Uncertainty is the only certainty’ Irrfan Khan 2018 Irrfan Khan died in Mumbai India 29 Apr 2020 after being admitted to hospital for a "colon infection" according to many news reports. However, The Times of India wrote about Khan’s colon infection, saying it may have resulted from cancer treatments. Sadly, Irrfan's mother died 3 days earlier but he was unable to attend her last rites owing to India's nationwide coronavirus lockdown restricting citizens' movements at that time. Rest in Peace Irrfan Irrfan Khan, known simply as Irrfan was an Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of…

05 Mar 2018

By Ronny Allan

4 Comments

RonnyAllan.NET – Community Newsletter February 2018

NewslettersAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Another great start to the year in both NETs in the news and my social media activity. It's been really cold where I am though! I'm so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions! This 'chat rom' is not designed to run like a traditional Facebook forum, it's a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And .... it's about learning. I welcome all types of NET, people from any country…

Tag: Neuroendocrine cancer