Advanced neuroendocrine cancer Archives

24 Oct 2023

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No flushes please!

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Flushing

Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people's expectations, diagnosing Cancer isn't a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis.…

27 Sep 2023

By Ronny Allan

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Neuroendocrine Cancer: Question, Clarify, Confirm

Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…

03 Sep 2023

By Ronny Allan

4 Comments

Passive patient or active advocate?

Awareness, Inspiration, SurvivorshipAdvanced neuroendocrine cancer

I've been researching Neuroendocrine Cancer for some time now. Why do I do this? Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health. I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere -…

31 Aug 2023

By Ronny Allan

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A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

NewslettersAdvanced neuroendocrine cancer, NET Centre of Excellence, Neuroendocrine cancer

On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts. The month was also helped by the publication of a solid tumour clinical trial and the breaking news of the CABOZANITINIB trial for NETs (if you missed those see below). I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night. I am very grateful.Below,…

30 Aug 2023

By Ronny Allan

16 Comments

Is your glass half empty or half full?

Inspiration, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Quality of LIfe (QoL), Surgery

Most people have probably heard of the saying "is your glass half empty or half full". If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to…

28 Aug 2023

By Ronny Allan

1 Comment

Neuroendocrine Cancer – normally slow but don’t be tricked!

AwarenessAdvanced neuroendocrine cancer, Carcinoid heart disease, Carcinoid syndrome, Hormones, Incurable cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, Quality of LIfe (QoL)

An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other…

26 Aug 2023

By Ronny Allan

16 Comments

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Diet, Hormones, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL)

When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity. This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!In my early blogs, there were several 'no go areas' which were either too complex or potentially…

05 Aug 2023

By Ronny Allan

2 Comments

The Cancer Legacy of Steve Jobs?

Awareness, Clinical Trials and ResearchAdvanced neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic cancer, Pancreatic NET (PanNET)

Update February 2026. Today, Yosemite said that it had raised more than $200 million for a second fund that has a total targeted size of $350 million, with heavy-hitter investors that include biotech giant Amgen, Memorial Sloan Kettering, MIT and venture capitalist John Doerr. Powell Jobs (Steve's wife) invested in the fund through Emerson; as a general partner, Jobs is also personally invested. Read more click here. Original story Just about everyone knows who Steve Jobs is but not many people have heard of Reed Jobs. Clearly a relative and is actually his son. Now aged 31, he wants to get…

31 Jul 2023

By Ronny Allan

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A review of July 2023 on RonnyAllan.NET

NewslettersAdvanced neuroendocrine cancer, Biopsy, Grade, Multidisciplinary team (MDT), NET Centre of Excellence, NET syndromes, Neuroendocrine cancer, Stage, Tumor board

On my website RonnyAllan.NET, July was a bit quieter mainly due to my holiday and other commitments. However, there was still significant support within and without the community. Below, I'll list the top performing blog posts in July, I can assure you there is some great information in there, and you may have missed some of my newest blogs which made it to the top 10. Number 1 is the story of US Representative Joaquin Castro, great diagnostic story and showing signs of being vocal about NET and the US healthcare system to a much wider audience - this is…

26 Jul 2023

By Ronny Allan

4 Comments

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 13 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, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. 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,…

24 Jul 2023

By Ronny Allan

2 Comments

Sometimes you gotta climb that hill, even if you get wet!

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, NET syndromes, Neuroendocrine tumour (NET)

Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor. The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor. We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point. The clouds were moving fast over our heads, dropping their rain each time. We still had to climb to the top and it…

01 Jul 2023

By Ronny Allan

0 Comments

Summary of June 2023 on RonnyAllan.NET

NewslettersAdvanced neuroendocrine cancer, Cancer related fatigue, Duodenal NET (dNET), NET syndromes, Neuroendocrine cancer

Summary - June was a relatively quiet month on my website RonnyAllan.NET - mainly due to me being on holiday for much of it! However, a respectable 18,000 blog views are not to be sniffed at! The top 10 for June are now listed. Take a look please, open them up, read them, share them. 1 Sometimes, you gotta climb that hill, even if it hurts (ronnyallan.net) This must have struck a chord. It's not a story about physical fitness, it's a metaphor about the mental challenges of living with cancer. 2 Currently trending on RonnyAllan.NET - Ronny Allan -…

10 Jun 2023

By Ronny Allan

6 Comments

Sometimes, you gotta climb that hill, even if it hurts

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor

I started my "sometimes you gotta climb that hill" series/campaign some years so. I used it as a metaphor based on my own experience of actually climbing up hills. In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that. But in hindsight, I don't believe I could have done some of these hills before I was diagnosed! To be bluntly honest with myself and you guys, I was too busy at work…

01 Jun 2023

By Ronny Allan

2 Comments

Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Clinical trial, High grade neuroendocrine tumour (NET), Immunotherapy, Neuroendocrine carcinoma (NEC), Poorly differentiated

Updated 13th November 2024Glad you found this interesting blog. However, I must warn you that it is in jeopardy due to the following announcement intercepted by my google agents. Read more by clicking here.I will monitor this for further information and update as necessary. Who are 23andMe?I personally had not heard of 23andMe but many people in North America might have. When you first look at what they do, you can be excused for thinking they are just another 'Ancestry' company, but they are more than that. They also get involved in genetics and health. To quote their marketing "we’re all of…

18 May 2023

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Catch them early, not late!

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Diagnosis, Early Diagnosis, Incidental diagnosis, Late Diagnosis, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN)

Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see. Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities. A few examples: 1. Most appendiceal NETs are found when patients present with…

01 May 2023

By Ronny Allan

1 Comment

Summary of April 2023 on RonnyAllan.NET

Living with Neuroendocrine Cancer, NewslettersAdvanced neuroendocrine cancer, Cancer survivor

Summary of RonnyAllan.NET website activity in April 2023 The top 10 most read posts in April are included below as the main product of this summary of my website RonnyAllan.NET in April 2023. A challenging month given other commitments and a rib injury sustained on holiday but pleased with my output. I hope there is something you missed and can catch up here. As usual, share this with anyone you think may benefit. Many thanks for reading. Oh yes, it's the great pretender - a new entry A new RonnyAllan.NET awareness campaign and it deserves to be shared to the world…

24 Apr 2023

By Ronny Allan

5 Comments

The NET Detectives

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Gastrinoma, Glucagonoma, Insulinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), PPoma, Somatostatinoma, Vasoactive intestinal peptide (VIP), VIPoma

The NET Detectives is an awareness post. Detecting NETs In general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in…

16 Apr 2023

By Ronny Allan

3 Comments

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Is this the face of a cancer patient? Yes, it is actually. This photo was taken on 31st October 2010. Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases. Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. …

03 Apr 2023

By Ronny Allan

4 Comments

Neuroendocrine Cancer: oh yes, it’s the great pretender

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine cancer, Syndrome

When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn't already there and…

01 Apr 2023

By Ronny Allan

0 Comments

RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Alternative therapies, Fructose intolerance, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET)

Summary - Many thanks for supporting my social media in March. I remain keen to hear any suggestions of the sort of thing you would like me to research and publish. I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances. Miranda and her parents are determined to help others despite the loss of Miranda. Click here…

09 Mar 2023

By Ronny Allan

1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, InspirationAdvanced neuroendocrine cancer, Cancer of unknown primary (CUP), Cancer research, Differentiation, Poorly differentiated, Well differentiated

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to…

19 Feb 2023

By Ronny Allan

6 Comments

Sometimes I have to climb hills for the mental challenge

InspirationAdvanced neuroendocrine cancer

Facing cancer tests both the mind and the body. Hill climbing—literal and metaphorical—captures that dual challenge perfectly. When I was diagnosed with Grade 2 metastatic Neuroendocrine Cancer in 2010, it came as a shock. I didn’t feel unwell enough to imagine I had stage IV disease. At first, I simply carried on working, assuming it was “something and nothing” and that normality would soon return. Over time, I learned that optimism and realism don’t always align, and I eventually settled somewhere between the two, adjusting my route as I went. My journey rose and fell in ways that felt very…

18 Feb 2023

By Ronny Allan

0 Comments

Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Clinical trial, Hereditary pheochromocytoma/paraganglioma syndromes, Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, Von Hippel-Lindau (VHL) Syndrome

What is von Hippel-Lindau disease (VHL)?Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific types of benign tumors, malignant tumors, and cysts in many organ systems. These include central nervous system hemangioblastomas; retinal hemangioblastomas; clear cell renal cell carcinomas and renal cysts; pheochromocytomas, cysts, cystadenomas, and neuroendocrine tumors of the pancreas; endolymphatic sac tumors; and cystadenomas of the epididymis. What is Belzutifan (Welireg)?It is an oral hypoxia-inducible factor-2 alpha (HIF-2α) inhibitor. As an inhibitor of HIF-2α, belzutifan reduces transcription and expression of HIF-2α target genes associated with cellular proliferation, angiogenesis and…

03 Jan 2023

By Ronny Allan

2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing…

08 Dec 2022

By Ronny Allan

0 Comments

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US). I once wrote a blog entitled "Four more years". I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you…

27 Nov 2022

By Ronny Allan

5 Comments

Metastatic Neuroendocrine Tumours: Incurable isn’t always terminal

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Incurable cancer, Palliative care, Terminal cancer

Words are important I was diagnosed with stage IV cancer in 2010. OK, it wasn't a really aggressive type, but it had caused a lot of damage. It's amazing to think that someone is still adding to their stage IV cancer story since diagnosis of "incurable cancer". You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here. So, am I terminal? No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 15 years (as at 2025) cannot possibly…

14 Sep 2022

By Ronny Allan

0 Comments

Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials and Research225Ac, Ac-225, Advanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Small cell lung cancer (SCLC), Targeted alpha-emitter therapy (TAT)

Update – 1 April 2026 RYZ401: New Alpha‑Emitter Trial (PRRT‑Naïve Only) In January 2026, RayzeBio (now part of Bristol Myers Squibb) opened a new first‑in‑human trial for RYZ401, titled “Study of RYZ401 in Subjects With Solid Tumors Expressing SSTRs” (NCT07165132). This Phase 1/2 study aims to: determine the recommended Phase 2 dose (RP2D) define the optimal treatment schedule assess safety and tolerability evaluate early signs of efficacy The trial includes NETs and other SSTR‑expressing solid tumours, including meningioma. Important: RYZ401 excludes anyone who has ever received PRRT (Lu‑177 or Y‑90). This makes it a PRRT‑naïve trial. 1 April 2026: The…

05 Aug 2022

By Ronny Allan

0 Comments

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials and Research, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carboplatin, Chemotherapy, Clinical trial, Etoposide, Immunotherapy, Ipilimumab (Yervoy), Metastatic Neuroendocrine Cancer, Nivolumab (Opdivo)

Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell. Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial of immunotherapy. Curtis has a high grade aggressive type of Neuroendocrine Cancer called Neuroendocrine Carcinoma (with a Colon primary). The immunotherapy has some effect to the point that he was able to have surgery, a treatment option not always available to poorly differentiated Neuroendocrine Carciomas. His story is relevant to many people's experiences across the broad spectrum of…

26 Jul 2022

By Ronny Allan

14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 12 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, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. 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,…

20 Jul 2022

By Ronny Allan

0 Comments

Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Atezolizumab (Tecentriq), Avistan, Bevacizumab, Clinical trial, Immunotherapy, Monoclonal antibodies, PD-1/PD-L1 Inhibitors, Vascular endothelial growth factor (VEGF)

Background Well differentiated NETs have been described as an "immunological desert" in recent years mainly due to the poor response rate data coming out of clinical trials of immunotherapy drugs. Poorly differentiated NEC has favoured better but mainly in the more obscure types. Which is why these data of a combo treatment containing one immunotherapy drug caught my eye. What is atezolizumab? It is a type of monoclonal antibody and a type of immune checkpoint inhibitor. It's a Programmed cell death protein -1 (PD-1)/ Ligand 1 (PD-L1) inhibitor. A drug that binds to the protein PD-L1 to help immune cells…

19 Jul 2022

By Ronny Allan

3 Comments

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

AwarenessAdenocarcinoma, Advanced neuroendocrine cancer, Biopsy, CT scan, Diagnosis, Differential diagnosis, Hydrocele, Liver metastases, Lymphoma, Mesenteric root, Retroperitoneal Fibrosis, Teratoma

Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period. It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just…

15 Jun 2022

By Ronny Allan

0 Comments

CAPTEM for Neuroendocrine Tumours

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Capecitabine (Xeloda), CAPecitabine TEMozolomide (CAPTEM)., CAPTEM, Chemotherapy, Clinical trial, Pancreatic NET (PanNET), Temozolomide (Temodal)

What is CAPTEM? Capecitabine is an oral drug used alone or with other drugs to treat certain types of colorectal cancer and breast cancer. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Capecitabine is taken up by cancer cells and breaks down into fluorouracil, a substance that kills cancer cells. Also called Xeloda. Note -Capecitabine is an oral Oral 5-FU prodrugs which are medications designed to be taken by mouth and converted into the active chemotherapy agent 5-flourouracil (5-FU) within the body, aiming for higher tumour selectivity and…

08 Apr 2022

By Ronny Allan

1 Comment

My illness may be invisible, but I am not

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

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…

20 Jan 2022

By Ronny Allan

3 Comments

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Well differentiated

Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be). Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to…

20 Nov 2021

By Ronny Allan

2 Comments

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Desmoplasia, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Retroperitoneal Fibrosis, Right hemicolectomy, Small intestine NET (SI NET), Surgery

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first…

11 Sep 2021

By Ronny Allan

0 Comments

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Biopsy, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diagnosis, Everolimus, Ga68 PET/CT, Immunotherapy, Incurable cancer, Lanreotide, Liver embolization, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surufatinib, Targeted alpha-emitter therapy (TAT), Targeted therapy

Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…

02 Sep 2021

By Ronny Allan

6 Comments

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Diagnosis, Epidemiology, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Prognosis, Well differentiated

Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…

04 Aug 2021

By Ronny Allan

8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Diarrhea, Diet, Flushing, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues

I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. Some talks were not recorded and/or permitted to be shared. These include (but are not limited to) a presentation to 'Global' Ipsen in Paris, UK…

26 Jul 2021

By Ronny Allan

7 Comments

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 11 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, and 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…

25 Jul 2021

By Ronny Allan

2 Comments

Neuroendocrine Cancer: 48 hours before diagnosis

Humour, InspirationAdvanced neuroendocrine cancer, Biopsy, CT scan, Mesentery, Retroperitoneal Fibrosis, Small intestine NET (SI NET)

A week before my formal diagnosis, I had a liver biopsy (19th July 2010), and I repeat what I said in this post, for me it wasn't exactly a walk in the park. I had a mild anesthetic, I felt extremely uncomfortable throughout, and I was in pain. In fact, they did call in another nurse to help and her only job was to hold my hand in reassurance, (from what I remember). Most patients report no issues with their liver biopsy. I was sent home on 20th July with some painkillers, but that pain was gone within 24 hours.…

13 Dec 2020

By Ronny Allan

2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Biomarker, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lu-177, Lutathera, Molecular markers, NETest, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Standardised uptake value (SUV), Tumour marker

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this…

08 Dec 2020

By Ronny Allan

0 Comments

Lanreotide: Eleven more years please!

Inspiration, TreatmentAdvanced neuroendocrine cancer, Lanreotide, Metastatic Neuroendocrine Cancer, Somatuline Autogel (US: depot)

Back in February 2015, I wrote an article called "Four more years" and the title came from an election campaign happening at the time when I had been on Lanreotide for approximately four years. Inspired by this campaign slogan, I too wanted four more years and crafted the blog post. However, I was underselling myself as I've now hit 11 years of Lanreotide on 9th December 2021. On that day in 2010, I was still recovering from major surgery and hadn't had any somatostatin analogues since leaving hospital on 26th Nov. Prior to surgery, I had been taking daily shots…

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…

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®…

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…

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…

Tag: Advanced neuroendocrine cancer