Living with Neuroendocrine Neoplasms – a site by Ronny Allan


Welcome to the website of Ronny Allan who was diagnosed with incurable Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, symptoms of iron deficiency and facial flushing (Carcinoid Syndrome). On this site, Ronny discusses various aspects of his cancer, his treatment, and his daily life in terms of changes he had to make. More detail of the background to Ronny’s diagnosis and treatment can be read by clicking here.  In addition, Ronny offers hundreds of articles on many different subjects, all meticulously researched from the most eminent sources. He also occasionally writes about other cancers in the news and related general cancer issues.

Factual, educational, positive and the occasional pinch of humour, he also uses this site to spread awareness of this unusual, less common and complex disease including any related issues. He is passionate about moving Neuroendocrine Cancer into mainstream knowledge circles to ensure maximum awareness.

Board Memberships and Associations:

  • Ronny is a member of the Strategic Advisory Board at Multimed Inc, publishers of Cancer Knowledge Network and Current Oncology – click here
  • Ronny is also a member of the 2019 WEGO Health Patient Leader Advisory Board. Read more here.

Awards and Nominations

  • In 2016, Ronny was nominated for 6 WEGO awards, made it to the finals in 2 (Blog and Community) and then won the annual WEGO Health Activist category of “Best in Show: Community”. This was not only a significant milestone for Ronny but also the Neuroendocrine Cancer community in general.
  • In 2017, Ronny was nominated for 3 WEGO awards and made it into the finals in all 3 nominations.
  • In 2018, Ronny was nominated for 5 WEGO Awards and was a WINNER in the ‘Best in Show: Blog’ Category.Read Ronny’s WEGO Health profile here.

Click here to hear my podcast. wego podcast

Accreditations

RonnyAllan.NET is accredited ‘Patients Included’ site and displays the tick icon below.  Every post has patient input.  Click here or the icon below to find out more.

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This is an accredited Patients Included site

Magazine Contributions and Features

  • Ronny is a contributor to Cure Magazine and you can read his articles by clicking here.

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  • Ronny has been featured by the NET Research Foundation via the article “Research Today is the Treatment of Tomorrow” – click here to read the article.

Ronny-Allan-ENETs

 

Contact Ronny Allan:

Please ‘Like’ Ronny’s NET Cancer Blog Facebook page  (click here and ‘Like’)

Please  also ‘Like’ Ronny Allan’s public Facebook page  (click here and ‘Like’)

Connect with Ronny on Twitter (click and then follow)

Connect with NET Cancer Blog on Twitter (click and then follow)

Connect with Ronny on Pinterest (click and then follow)

Connect with Ronny on Instagram (click and then follow)

Read and subscribe to Ronny Allan’s twitter Newsletter (click and then subscribe)

A private chat group can be found here

Ronny’s most read articles can be found here or by browsing the site: Most Popular Posts (CLICK)

He supplements his WordPress blog activity by running a very popular Neuroendocrine Cancer Facebook Cancer Community page and in 2018, launched a Patient Support Group.

If you want to see more posts, please like this Facebook page.

Additionally, he has other campaign sites here and here.

Sometimes you just got to climb that hill!

Jacinto

Disclaimer:

Please note all information provided in this blog is Ronny Allan’s own views and opinions and is therefore strictly for educational or discussion purposes. Moreover, it does not constitute professional medical advice, diagnosis, treatment, or care. Furthermore, it does not necessarily reflect the views or opinions of his medical team, Macmillan Cancer Support, PLANETS Charity, Carcinoid Cancer Foundation, NET Patient Foundation, NET Research Foundation, WEGO Health, Cure Magazine, Cancer Knowledge Network, MultiMed Inc, or any other organisation or person with whom he may be directly or indirectly associated. Full Disclaimer – clickhere

Copyright © 2019 · Ronny Allan. NET Cancer Blog and RonnyAllan.NET, including all Facebook pages, Facebook groups, twitter accounts, Nuzzel newsletters, Pinterest, Instagram. Some images may also be subject to copyright

Please note this site is totally non-profit and is not aligned to a particular non-profit organisation.  Additionally, any referencing of organisations which have a fundraising function is for their non-fundraising technical content and not in any way a suggestion you should donate to the organisation being referenced.  No buying or selling allowed on my sites please and all posts and comments are moderated.

Please note I’m not a Zebra.

64 thoughts on “Living with Neuroendocrine Neoplasms – a site by Ronny Allan

  • Alex

    Dear Ronny,

    First I want to use this opportunity to thank you for so wonderfully serving the needs of NET/NEC patients. Being a silent reader I have already received numerous extremely helpful pieces of information from you, and I am very grateful to you for that.

    I am writing to you today because being a NEC patient I was recently ready to prepare myself for the final stage of my life as there had not been any promising therapy option left in my case. Things, however, changed from one day to the other thanks to the research by a Japanese team of scientists. These days I am living an almost normal life again.

    Previously I received Cisplatin and Etoposide until it was stopped because of too much toxicity, Irinotecan (did not work), Opdivo for 2 months (did not work) and Amrubicin for about 6 months. Thereafter, there were a few treatment options but with limited promise that they would work.

    As it happened, however, a Japanese team of researchers found a new therapy by combining Paclitaxel and Ramucirumab. I am receiving this therapy now with very positive results. While I spent most of my time at home until recently because I was getting weaker as a result of my progressing disease I now have hardly any complication in my daily life, and I am slowly but surely regaining the 65 pounds which I had lost before.

    A comprehensive summary of the Japanese research results, which are the basis of my current treatment, can be found in “Efficacy and safety of ramucirumab-containing chemotherapy in patients with pretreated metastatic gastric neuroendocrine carcinoma”
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6212678/). If you google “paclitaxel ramucirumab nec” you can find a lot more on this.

    I can imagine that this therapy may not have the same positive effect in the case of all patients with similar symptoms, but I hope that my case can serve as an addition to the discussions between patients in similar situations and their doctors about the best subsequent therapy.

    Kind regards,
    Alex

  • Beth Ritter

    Hi Ronny, thank you for all of your amazing info and helping folks! My children’s father was diagnosed with PNET with dual lobe liver mets in Sept 2016. He was seen at Dana Farber and they advised his liver mets were inoperable. He started with Sandostatin inj for about a yr and half. Liver mets got worse so he was started on Captem, did that for 6 months or so but wasn’t working. He also got spinal cord spread (tumor) which was treated in end of 2018. He then was put on FOLFOX for about 3-4 months but that didn’t work. He went to Roswell Park in Buffalo, they did a gallium scan and he did have some lymph node involvement. He now has had a Lutathera treatment June 27, 2019, being the last line of treatment left, having exhausted every other treatment. No one has really told him his “stage”. Thoughts on what to expect? It’s frustrating not even having a clue! Thanks again, Beth

    • if he has liver and bone mets then he is stage 4. Don’t be too concerned by stage 4 as its not normally the red flag it is with more aggressive cancers. NETs is one cancer where grade is more important than stage. Do you know is Ki67 score or grade?

  • Nancy Rushing

    Hi Ronny,
    I wrote once before about my husband and I both having Nets/Carcinoid. I was trying to find out in all your studies have you heard of this before. We even have same locations and same surgeries last year. Any help would be appreciated. Thank you for your articles , they are very informative.

  • I have GI Nets & Carcinoid Syndrome.
    I go to Alabama Oncologist in Alabaster, Al.
    I take a shot lanreotide injection once a month.
    I have been taking shots for this for a year & they are watching me closely. I would appreciate any help you could give me about this.

  • Anne Adams

    Hello Ronny, I was diagnosed with NETs in 2015 having had problems dating back to 1990. I had a small bowel resection in 2015 which was discovered by chance. Previously, a tumour was found in my right lung in 2008, which I was not told about till four months later! My problem now, is that I have a negligence case and need to know how I can find out if the one in my lung was the primary and cause of the ones on the bowel. Apart from the Royal Free caring for me now, I don’t know who else or where else to go to get this information. Can you help please. Thank you Anne A.

    • The only real way to find out for sure is to have your case reviewed by an independent Neuroendocrine Specialist. Therein lies the problem. I cannot think of any other way to categorically prove this. If you wanted a personal view, you could message me on my facebook site.

  • John Milford

    God Bless you Ronny. My wife is a NET patient (6 mo’s from first surgery), and gets a tremendous amount of encouragement and strength from your blog, and she amazes me with her attitude. Keep up the good work.

  • Guillermo Salamanca

    Today while watching the Pasadena Rose parade l texted Dr Woltering stating that it would be very nice to see Him and Dr Boudreaux waving their hands on top of one of those floats celebrating life , and He was very happy with the idea
    I think it can be done
    What do you think?

  • Paul "Scouse" Downey

    Hi Ronny, why does it always pick on the good guys? Be strong mate and your work in facing up to this and your support for other people going through similar heartache is inspirational. It must ne the RTG training mate!!!! Continue being so positive mate!! Thinking of you, Best Wishes, Paul “Scouse” Downey

  • Angela

    Hi Ronnie
    My husband was diagnosed with oespheagal cancer in Feb this year. This then was diagnosed as Neuroendocrine cancer. We live in the UK and can’t find out anything about this disease. He had had Chemotherapy and Radiation treatment but no sooner has the treatment finished it starts growing back. Do you know of any helpful sites which would give us some more insight into what we’re dealing with. Please. I have tried to contact you via Facebook but I’m not that clued up with computers,

    • Sorry to hear that Angela. However, in addition to giving you hope, my site can signpost you to the correct areas. My site can also provide you with useful patient centric advice. Firstly, please ‘Like’ this page https://m.facebook.com/NETCancerBlog/

      Can you confirm where the Neuroendocrine Tumours are? If I’ve read this correctly, it was oesophagus but then also Neuroendocrine. Or do you mean mis diagnosed with oesophagus instead of neuroendocrine or he has both? Speaking on Facebook messenger is easier, so when you like the page above, please make contact thanks

  • Hanka

    Hi Ronny, I come from the Czech Republic, I found the link to your blog. I taught English at the school of the German language 🙂 But what I can handle PC, I throw it into the compiler and hopefully it translates correctly. I’m 34 years old and I was diagnosed with a malignant carcinoid tumor 13.8.2015 in the intestine, so far I have hemikolektomii and I’m waiting on further examination, I’m afraid. But your site is a great pity that something like this is not for us. Big thumbs up and greet you from the Czech Republic.Hanka

  • Thank you so very much for the quick turnaround! Unfortunately I don’t use facebook, but will google “loveablelungnoids” and see what comes up. Feel good!!!!!!!!!

  • Hi. I was wondering if you are aware of or can direct me to any studies done regarding lung carcinoid tumors. I am particularly interested in where they come from; whether anyone has discovered genetic markers for them; who gets them; recurrence numbers; nutritional and/or homeopathic remedies or suggestions to help stave off recurrence; whether there is a resource specifically for lung carcinoid tumor patients; comparative pathology reports; studies or trials in this arena, etc. Thanks so much in advance for your help!!!!

  • Ashley

    Great to see you’re doing well 5 years after your diagnosis! My mom was diagnosed with neuroendocrine cancer in May 2010 and died in July 2010.

    • Ashley, I’m so sorry to hear about your Mom, particularly as she was only diagnosed a very short time before she passed and as I was myself being diagnosed. Sometimes this type of cancer can be as cruel as more aggressive types and your comment is a timely reminder of that. Feel free to keep in touch. Ronny

  • Susan

    Hi Ronny,

    I hope you can help me. On Thursday I have been asked to be apart of an ITV piece on cancer. They are interviewing me and I need a clip/ sound bite to describe what I have. Short but sweet. Suggestions please. I hope to do my bit to spread awareness…Thank you. Susan

    • sue Z.

      Dr. Wolin, Markey Cancer Center at U.K. (top specialist with Pancreatic Neuroendrocrine Tumors) said if you lined up one million cancer patients, only three would have a PNET.

      • thanks Sue, he’s not far off. The study which I referred to has a breakdown by type and pNETs are measured approx 0.4 per 100,000 which turns out to be 4 per million as at 2004 (so is likely to be higher today). Clearly pNET is only one type of Neuroendocrine Tumour and the figures quoted are for all types. Yes, as a standalone condition, pNETs are rare. As I said in the blog, the rise in incidence is mainly due to lung, small intestine and rectal NETs increases. I personally think the numbers are potentially underestimated as pNETs are more difficult to detect and diagnoise and some will have been recorded incorrectly as Pancreatic Cancer, however, perhaps less of a problem in USA where recording is much better. Thanks for taking the time to comment!

  • sue Z.

    Husband diagnosed with P NET – at first said it was stage 4 adenocarcinoma (size of a large grapefruit) – no symptoms! On biopsy, said it was good news – P NET with metastases to liver but no where else. We are fortunate to live 100 miles from Un. of Ky. where one of the foremost NET specialists treats patients at the Markey Cancer Center, Dr. Edward M. Wolin. Suggested: First an Octreotide Scan for three days to see if the radioisotope material adheres to the receptors; then if ;yes; Lanreotide monthly and CAPTEM oral chemotherapy, which, he said, has had remarkable success in shrinking NET tumors…and possibly pancreatectomy and splenectomy down the road. I guess this is the “new normal” for us, but a blessing that it wasn’t the adenocarcinoma they thought at first when they said to get our house in order and our bucket list made!

    • thank you for taking the time to comment. Yes, there is a lot of stories about the diagnostic confusion between pancreatic adenocarcinoma (not a nice cancer to have). Check out “The Anatomy of NET Cancer”.

      Sounds like you are in good hands, I’ve heard great things about Dr Wolin. I’m a 4 year Lanreotide veteran and happy to hear husband is on that. I have also heard good things about CAPTEM – in fact I included that in a blog last week – “A deadly cloud……” – check it out. I do hope you will get time to read some of my blogs and also subscribe (Like) to my Facebook page here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723

      Keep in touch and best wishes to your husband.

      Ronny

  • Cheryl turpin

    Ronnie

    Great to find your website. Decided to comment for first time ever since diagnosis…..small intestine carcinoid found on routine colonoscopy. No symptoms so this was primary…very lucky for me to have a great gastro guy. Anyway have a great day and keep on blogging!

    Dx. May 10, 2014
    Ottawa, Ontario , Canada

  • Angela Suarez

    Very happy to read your blog on Facebook today. My 25 year old son Robert, was recently diagnosed the day after Christmas, with stage 4 Carcinoid cancer after being misdiagnosed numerous times. His also started in his small intestine, and spread to his lymph nodes and liver. Best wishes and thank you for sharing.

    • thank you and I wish your son all the best with his treatment. Look out for future blogs which may be of relevance. Thanks also for liking my new facebook page, this is helping spread the word. Kind regards

  • Hi Ronny. I believe that collective awareness continues to rise because people have the courage to speak honestly about their experiences. I feel that if by blogging you, me or any of the others out there affected by cancer, can help someone else in making informed decisions or normalizing their experience then we have done a good thing. My personal mantra is all about an alkaline diet and blending traditional and non traditional methodologies in treatment. All the best and I am now a happy follower.

  • Good blog Ronny, I hope your blog and mine and the others are successful in raising awareness and helping others with our disease.
    Cy
    DX May 2011, mid-gut carcinoid with mets in liver. Half of liver removed May 2013. Primary still not located.

  • Debbie

    Very inspirational Ronny, diagnosed a year last May with Carcinoid that has metastasised in my liver. Still trying to find a treatment that will work for me, lanreotide not helping. My biggest worry is my lack of fitness and how quickly I lost it. So in the short term I am going to try Force Cancer re-hab and try to enjoy what is now a very limited lifestyle.

    • thank you. I think it’s helpful to consider all aspects of your treatment to date against the efficacy of Lanreotide. For example, if you’ve had abdominal surgery then there are side effects which Lanreotide may not fully counter (in fact the malabsorption issue may be exacerbated) but there are other ways of tackling that. I hope you have a NET centre looking after you? I’ve woken up to my lack of fitness only this year (4 years post diagnosis) and hopefully my latest drive will improve overall quality of life. Get in touch with me via private facebook message or email ronny.allan@sky.com Keep reading my blogs though!

      • Tony Lewis

        Diagnosed PNET 2013 – partial pancreatectomy, splenectomy and partial stomach resection- metastasized to liver and bowel and abdomen – 2x Y90 to liver – partial success and now monthly Lanreotide – biggest issue is fatigue – working full time but need to exercise- how to get started? I find your blog very helpful – thank you
        Tony

      • Hi Tony – thanks for the comment. Pleased you like my blog, sounds like you’ve been through the mill. Working full time vs exercise vs fatigue is tough. Particularly if your job involves long commutes. I managed it for 4 years until I’d had enough but fortunately I was in a good position to move on. I’m quite interested in the metastasis to the bowel for a pNET – is that the upper part of the duodenum or further away?

        I’m glad you’re enjoying my blog and I post even more on my associated Facebook page here: https://www.facebook.com/NETCancerBlog

  • Miranda

    Hello Ronny! I have a 15 year old daughter that was just diagnosed this summer with Metastatic Carcinoid Tumor Cancer!!! Any feedback will be beneficial to us in learning about this.

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