31 Oct 2019
By Ronny Allan
9 Comments
Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness, , , , , , , , , , ,
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…
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12 Oct 2019
By Ronny Allan
3 Comments
The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship, , , ,
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…
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24 Sep 2019
By Ronny Allan
1 Comment
Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials and Research, , , , , , , , , , , , ,
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…
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09 Sep 2019
By Ronny Allan
0 Comments
Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

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

Clinical Trials and Research, , , , , , , , , , , , , , , ,
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…
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24 Aug 2019
By Ronny Allan
1 Comment
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…
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29 Jul 2019
By Ronny Allan
0 Comments
Surufatinib for Neuroendocrine Cancer

Surufatinib for Neuroendocrine Cancer

Clinical Trials and Research, Treatment, , , , , , , , , , , , , , ,
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,…
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18 Jul 2019
By Ronny Allan
5 Comments
Pancreatic Neuroendocrine Tumours – to cut or not to cut

Pancreatic Neuroendocrine Tumours – to cut or not to cut

Treatment, , , , , , , , , , , , ,
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…
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10 Jun 2019
By Ronny Allan
3 Comments
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 and Research, , , , , , , ,
Reviewed and edited 17th March 2022Provectus Biopharmaceuticals Announces Presentation of Full Study Data from Metastatic Neuroendocrine Cancer Phase 1 Trial of PV-10® at ENETS Conference 2022Provectus (OTCQB: PVCT) today announced that data from an ongoing clinical trial of investigational cancer immunotherapy PV-10 (rose bengal sodium) for the treatment of neuroendocrine tumors (NET) metastatic to the liver (mNET) refractory to somatostatin analogs (SSAs) and peptide receptor radionuclide therapy (PRRT) (NCT02693067) was presented at the annual conference of the European Neuroendocrine Tumor Society (ENETS), held from March 10-11, 2022 in a hybrid setting in Barcelona, Spain and online.The oral presentation was made…
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08 Jun 2019
By Ronny Allan
0 Comments
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 and Research, Living with Neuroendocrine Cancer, , ,
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…
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04 Jun 2019
By Ronny Allan
4 Comments
LUTATHERA (PRRT) – Clinical Trial for Grade 2/Grade 3 Patients Advanced GEP-NET (NETTER-2)

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

Clinical Trials and Research, Treatment, , , , , ,
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…
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23 Apr 2019
By Ronny Allan
2 Comments
Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)

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

Clinical Trials and Research, , , , , , ,
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…
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28 Feb 2019
By Ronny Allan
6 Comments
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,…
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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

“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…
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05 Feb 2019
By Ronny Allan
1 Comment
Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

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

The NET Effect Series, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
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…
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22 Jan 2019
By Ronny Allan
3 Comments
Clinical Trials: Lenvatinib Efficacy in Advanced Neuroendocrine Tumours

Clinical Trials: Lenvatinib Efficacy in Advanced Neuroendocrine Tumours

Clinical Trials and Research, , , , , , , , , , , , ,
Lenvatinib (LENVIMA) in Neuroendocrine Cancer — Updated January 2026 What is Lenvatinib? Lenvatinib is a targeted therapy known as a multikinase inhibitor. The brand name is LENVIMA. These drugs work by inhibiting multiple intracellular and cell‑surface kinases involved in tumour growth, angiogenesis, and metastatic progression. Targets include: VEGFR PDGFR FGFR c‑KIT Flt3 Because tumour progression typically involves multiple signalling pathways rather than a single driver, multikinase inhibition is a logical therapeutic strategy. How does it compare with other targeted therapies used in NETs? Sunitinib (Sutent) – a multikinase inhibitor targeting VEGF pathways; approved for pancreatic NETs. Everolimus (Afinitor) – an…
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16 Jan 2019
By Ronny Allan
0 Comments
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 and Research, , , , , , ,
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…
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14 Jan 2019
By Ronny Allan
0 Comments
Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trials and Research, Treatment, , , , , ,
UpdateTrial complete.  Conclusion abstract - Single agent PD-1/PD-L1 inhibitors have not demonstrated clinical utility in an unselected NET population and should not be used outside of clinical trials. The potential for PD-L1 inhibition in the thoracic cohort warrants further investigation.  Read more here. 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.  Its brand name is SPARTLIZUMAB.How PDR001 worksPDR001 is a type of immunotherapy, meaning that it acts by activating the body’s own immune system to recognize and fight…
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03 Jan 2019
By Ronny Allan
1 Comment
Breath test with the goal of detecting multiple cancers – ready to start trials

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

Clinical Trials and Research, , , , ,
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…
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20 Dec 2018
By Ronny Allan
7 Comments
Q-Sphera™ – Next Generation Somatostatin Analogue delivery system?

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

Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment, , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email UPDATE: In March 2020, the decision was taken to terminate further in-house development of the MTD201 programme with immediate effect although the asset remains available for licensing. All activities connected with MTD201 have been wound down expeditiously and the manufacturing facilities in Bilbao have been closed. Following the termination of in-house development of MTD201, the Company realigned its strategy towards exploiting its Q-Sphera technology more broadly.Original Article belowIn my article listing the somatostatin analogues and their drug delivery systems pipeline (click…
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30 Nov 2018
By Ronny Allan
0 Comments
RonnyAllan.NET – Community Newsletter Covering November 2018

RonnyAllan.NET – Community Newsletter Covering November 2018

Newsletters, , , , ,
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…
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21 Nov 2018
By Ronny Allan
10 Comments
Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , ,
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…
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01 Nov 2018
By Ronny Allan
0 Comments
RonnyAllan.NET – Community Newsletter Covering October 2018

RonnyAllan.NET – Community Newsletter Covering October 2018

Newsletters, , , , ,
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…
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30 Oct 2018
By Ronny Allan
9 Comments
Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

Awareness, , , , , , , , , , , , , , , , , , , , , ,
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…
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20 Oct 2018
By Ronny Allan
1 Comment
How to Talk to a Cancer Patient Without Being a Complete Twit

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

General, Humour, Living with Neuroendocrine Cancer, Patient Advocacy
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…
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10 Oct 2018
By Ronny Allan
0 Comments
Neuroendocrine Cancer – Short Update from NANETS 2018

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting.  It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter,…
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08 Oct 2018
By Ronny Allan
5 Comments
Neuroendocrine Cancer – on your bike!

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, Survivorship, , , ,
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…
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01 Oct 2018
By Ronny Allan
1 Comment
RonnyAllan.NET – Community Newsletter Covering September 2018

RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletters, , , , ,
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.…
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31 Aug 2018
By Ronny Allan
0 Comments
RonnyAllan.NET – Community Newsletter Covering August 2018

RonnyAllan.NET – Community Newsletter Covering August 2018

Newsletters, , , , ,
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…
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30 Aug 2018
By Ronny Allan
2 Comments
Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

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

Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment, , , , , , , , , , , , , , , ,
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,…
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16 Aug 2018
By Ronny Allan
10 Comments
Aretha Franklin 1942-2018: Neuroendocrine Cancer

Aretha Franklin 1942-2018: Neuroendocrine Cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer, ,
On 16th Aug 2018, Publicist Gwendolyn Quinn told The Associated Press through a family statement that Aretha Franklin passed at her home in Detroit. The statement said "Franklin's official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin's oncologist, Dr. Philip Phillips of Karmanos Cancer Institute" in Detroit. Clearly, he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast-moving social media world, this is what went out with the lazier writers and editors abbreviating it to just Pancreatic Cancer.  All of these incorrect posts will now be embedded in…
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30 Jul 2018
By Ronny Allan
8 Comments
RonnyAllan.NET – Community Newsletter JULY 2018

RonnyAllan.NET – Community Newsletter JULY 2018

Newsletters, , , , ,
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…
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03 Jul 2018
By Ronny Allan
4 Comments
Clinical trial of 177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors

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

Clinical Trials and Research, , , , , , , , ,
Update April 2023There is now an interventional Phase 1 clinical trial of this PRRT variant happening in Memorial Sloan Kettering Cancer Center, New York, New York, United States, 10065, contact Contact: Lisa Bodei, MD, PhDThe clinical trial document is here NCT05475210 - this is a small trial (9 participants) and make sure you check the exclusion and inclusion criteria. Click here:177Lu-DOTA-EB-TATE in Untreated (Naïve) Adult Patients With Advanced, Well- Differentiated Neuroendocrine Tumors - Full Text View - ClinicalTrials.govIn the NewsUpdate in March 2021.  Molecular Targeting Technologies, Inc. (MTTI), a clinical stage radiopharmaceutical therapy company, announced the approval of an Investigational…
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02 Jul 2018
By Ronny Allan
5 Comments
RonnyAllan.NET – Community Newsletter JUNE 2018

RonnyAllan.NET – Community Newsletter JUNE 2018

Newsletters, , , , ,
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…
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07 Jun 2018
By Ronny Allan
5 Comments
RonnyAllan.NET – Community Newsletter May 2018

RonnyAllan.NET – Community Newsletter May 2018

Newsletters, , , , ,
  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…
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31 May 2018
By Ronny Allan
17 Comments
All you need to know about Somatostatin Receptor PET/CT Scans for Neuroendocrine Tumours

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

Treatment, , , , , , , , , , , , , , , , , , , , , , ,
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…
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30 Apr 2018
By Ronny Allan
9 Comments
RonnyAllan.NET – Community Newsletter April 2018

RonnyAllan.NET – Community Newsletter April 2018

Newsletters, , , , ,
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…
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11 Apr 2018
By Ronny Allan
3 Comments
Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

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

Clinical Trials and Research, Treatment, , , , , , , , , , ,
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,…
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03 Apr 2018
By Ronny Allan
2 Comments
RonnyAllan.NET – Community Newsletter March 2018

RonnyAllan.NET – Community Newsletter March 2018

Newsletters, , , , ,
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. …
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16 Mar 2018
By Ronny Allan
5 Comments
Irrfan Khan

Irrfan Khan

Awareness, ,
‘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…
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05 Mar 2018
By Ronny Allan
4 Comments
RonnyAllan.NET – Community Newsletter February 2018

RonnyAllan.NET – Community Newsletter February 2018

Newsletters, , , , ,
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…
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03 Feb 2018
By Ronny Allan
5 Comments
Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Clinical Trials and Research, Diet and Nutrition, Treatment, , , , , , , , , , , , , , , ,
Diarrhea is a huge subject for NET patients, whether it's caused by the tumour itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life.  Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate.  I don't normally write articles on over the counter commercial products but this one is an exception…
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01 Feb 2018
By Ronny Allan
2 Comments
RonnyAllan.NET – Community Newsletter January 2018

RonnyAllan.NET – Community Newsletter January 2018

Newsletters, , , , , , , , ,
A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places.  Help me populate locations in my live article on  PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known…
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30 Jan 2018
By Ronny Allan
1 Comment
I now take food with my medicine!

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds!  However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests.  Here, conversations bypass the weather and focus on being under the weather! I thought…
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26 Jan 2018
By Ronny Allan
4 Comments
BREAKING NEWS – US FDA Approves Lutetium Lu 177 dotatate (Lutathera®) – PRRT?

BREAKING NEWS – US FDA Approves Lutetium Lu 177 dotatate (Lutathera®) – PRRT?

Living with Neuroendocrine Cancer
PRRT was approved in USA on 26 Jan 2018. The approval is for the treatment of somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors in adults. CLICK HERE. The extended access program (trial) is no longer offered but these locations should be ahead of the game in terms of provision, notwithstanding insurance and provision of sufficient nuclear material. Read more about PRRT by clicking here   Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign…
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15 Jan 2018
By Ronny Allan
11 Comments
Shame on you!

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
This is not an attempt to bash people for making genuine mistakes. However, it is easy to make the mistake with people who have invisible disabilities, something now forming part of day to day life and many establishments now emphasise that in their bathrooms/toilets/restrooms.  Probably long overdue.  For the record, I don't have a visible disability, nor do I have access to any special schemes or 'perks' to gain any advantage.  I quite like to walk and don't really care how far it is to the building.  Now and then I do need short notice access to a toilet facility,…
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31 Dec 2017
By Ronny Allan
2 Comments
NETwork with Ronny © – Community Newsletter DECEMBER 2017

NETwork with Ronny © – Community Newsletter DECEMBER 2017

Newsletters, , , , , , , , ,
6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys.  I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible…
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30 Dec 2017
By Ronny Allan
2 Comments
Ronny Allan – Top 6 posts of 2017

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration, , , , , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy…
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20 Dec 2017
By Ronny Allan
5 Comments
Neuroendocrine Cancer – surveillance and follow up

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , ,
Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many…
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12 Dec 2017
By Ronny Allan
3 Comments
Update: Management of Neuroendocrine Tumors

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Treatment, , , , , , , , , , , , , , , , , , , , , , ,
This is an excellent and positive video based overview of where we are with the Management of NETs.  This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference.  This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too!  I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…
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04 Dec 2017
By Ronny Allan
0 Comments
NETwork with Ronny © – Community Newsletter NOVEMBER 2017

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Newsletters, , , , , , , ,
Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so…
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