Neuroendocrine cancer Archives

10 Jan 2016

5 Comments

Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

TreatmentActin, Advanced neuroendocrine cancer, Afinitor, CA4P, Combretastatin A-4 phosphate (CA4P), Everolimus, Fosbretabulin tromethamine, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Ovarian cancer, Sunitinib (Sutent), Thyroid cancer, Vascular, Vascular disrupting agent (VDA)

{NEW} added 4 June 2019 From ASCO 2019 conference extract: Of the 17 patients enrolled, 16 completed the 12-week trial. One patient was not evaluable due to noncompliance. No DLTs were observed at day 21. The highest dose of 10 mg daily oral everolimus in combination with weekly 60mg/m2 IV fosbretabulin is the RP2D. No grade 4 or 5 toxicities were noted. Grade 3 toxicities were seen in 5 patients; abdominal pain and hyperglycemia (not related to study drug), fatigue (possibly related), decreased lymphocyte count and anemia (related). Several patients had delay in treatment due to grade 2 AE’s (GI…

29 Dec 2015

By Ronny Allan

2 Comments

Neuroendocrine Cancer – a Doctor’s experience

GeneralLiver embolization, Neuroendocrine, Neuroendocrine cancer, Quality of LIfe (QoL), Surgery

UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR'S STORY FROM THEIR WEBSITE BUT I'M TRYING TO OBTAIN THE SCRIPT ELSEWHERE. When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now. I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening. In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo. As we…

22 Oct 2015

By Ronny Allan

7 Comments

Your Money or Your Life

Inspiration, Survivorship, TreatmentAlopecia, Chemotherapy, Hodgkin lymphoma, Immunotherapy, Keytruda, Melanoma, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nivolumab (Opdivo), Opdivo (Nivolumab), Pembrolizumab (Keytruda), Stem Cell

As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients. I've been following her story for almost 2 years and she has really inspired me. The title of this article is based on the title of a TV programme about…

15 Oct 2015

By Ronny Allan

17 Comments

Not all Cancer is simple

GeneralBreast cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below). Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with…

07 Sep 2015

By Ronny Allan

11 Comments

PRRT and the NHS England Cancer Drugs Fund (now archived information)

TreatmentAfinitor, DOTA-TATE, Everolimus, Gallium 68 (Ga68), Lu-177, Lutathera, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nuclear medicine, Octreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radiolabelled somatostatin analogue, Radionuclide, Yttrium 90 (Y90)

Please note this post is now historic information - PRRT (Lutathera) was eventually approved for use in UK. See the following post for the very latest on PRRT worldwide - CLICK HERE I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF). You can read the detail of the decision here: CDF Statement. PRRT has regularly been described by NET specialists and patients as the "magic bullet" due to its potential to shrink or kill tumours. This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after…

04 Sep 2015

By Ronny Allan

2 Comments

Screw that diagnosis and get on with it!

GeneralCarcinoid tumour, Neuroendocrine, Neuroendocrine cancer, Quality of LIfe (QoL)

Every now and then I see a positive story during my travels around the internet. When I saw this one from K**** in Pennsylvania, I had to share. If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43. I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things…

18 Aug 2015

By Ronny Allan

35 Comments

Neuroendocrine…..the little suckers get everywhere!

AwarenessCarcinoid tumour, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

UNDER REVIEW FOR REPUBLISHING USING 2025 DATA One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan. The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message), and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'. The response was amazing and on twitter it…

21 Jul 2015

By Ronny Allan

16 Comments

Sorry, I’m not in service

Awareness, Living with Neuroendocrine CancerNeuroendocrine cancer, Quality of LIfe (QoL), Surgery

This blog was first published in 2015 and featured by Macmillan Cancer UK - although they don't feature my guest blog now due to their revised publication rules (but you're reading it now so it doesn't matter!). See this link to their Facebook post publishing my guest blog click here .....let's activate this 10 year old discussion in the Facebook post comments! Let's get this post bumped up their Facebook feed - this generates awareness. It's good to be busy, it can take your mind off stuff you don't really want to think about. That was my tactic after being…

07 May 2015

By Ronny Allan

4 Comments

The C Word

GeneralBreast cancer, Neuroendocrine cancer, Quality of LIfe (QoL)

'The C Word' or 'The Big C' - the subject which must not be discussed. Or is this now an out of date phrase? I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word). Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission. We now have much…

03 Feb 2015

By Ronny Allan

27 Comments

Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid syndrome, Lanreotide, Malabsorption, Neuroendocrine cancer, Octreotide, Somatostatin analogues, Steatorrhea

This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide: 10 (then 13) more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015. In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale…

07 Jan 2015

By Ronny Allan

7 Comments

The Mother of all Surgeries

TreatmentChemotherapy, Distal pancreatectomy, Hyperthermic intraperitoneal chemotherapy (HIPEC), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pseudomyxoma peritonei (PMP), Surgery, Total pancreatectomy

My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were…

05 Dec 2014

By Ronny Allan

0 Comments

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Somatostatin analogues

UNDER CONSTRUCTION I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since…

31 May 2014

By Ronny Allan

4 Comments

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Travel with RonnyMetastatic Neuroendocrine Cancer, Neuroendocrine cancer, Quality of LIfe (QoL)

The final leg of the our Hadrian's Wall walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway. We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun - see picture above which was taken from our room. It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born. Some people say final leg of the…

26 May 2014

By Ronny Allan

0 Comments

Hadrian’s Wall Day 1 – Sunny Newcastle

InspirationNeuroendocrine cancer

The first day under our belts but it wasn't easy. We always knew it would be an odd walk with the first two thirds in urban environments. The first third of the route took us from Segedumun Fort, the official start/end of the wall walk in the east. There is evidence of Newcastle's previous and declining shipping industry all the way along the Tyne. The second third took us through modern Newcastle including impressive views of the Sage and Baltic Arts Centres on the opposite bank and the iconic Tyne Bridge which we walked under. Quite a lot of riverside…

08 May 2014

By Ronny Allan

3 Comments

What have the Romans ever done for us?

Humour, InspirationNeuroendocrine cancer

"What have the Romans ever done for us?" Reviewed and updated 5th October 2021 .......... apart from better sanitation, and medicine, and education, and irrigation, and public health, and roads, and a freshwater system, and baths, and public order ....... 😊 (apologies to those not familiar with Monty Python stuff!) Well, they also left us the outstanding Hadrian's Wall which is the first topic of today's blog. In January 2014, the oldest piece of paper in my 'in tray' was a newspaper article about the World Heritage Site of Hadrian's Wall - it was dated 28 Sep 2003 entitled 50…

Tag: Neuroendocrine cancer