Living with Neuroendocrine Cancer – Home Page

BREAKING NEWS – On 26th September 2018, Ronny Allan won the 2018 WEGO Health Awards for Best in Show: Blog

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Welcome to the blog site 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). In this blog, Ronny discusses various aspects of his cancer, his treatment, and his daily life in terms of changes he had to make.

Factual, educational and the occasional pinch of humour, Ronny aims to put a positive spin on his life. He also uses the blog 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. He also occasionally blogs about other cancers in the news and related general cancer issues.

Ronny is a member of the Strategic Advisory Board at Multimed Inc, publishers of Cancer Knowledge Network and Current Oncology – click here

In 2016, Ronny was nominated for 6 awards, made it to the final in 2 (Blog and Community) and then won the annual WEGO Health Activist category of “Best in Show: Community”.  This is a significant milestone for the Neuroendocrine Cancer community which comprises those who support Ronny on this page and also on Twitter, Facebook, Pinterest, Instagram and Google Plus.

In 2017, Ronny was nominated for 3 WEGO awards and managed to get 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.

Check out my Podcast (click and press play)  – new international audiences
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This is an accredited Patients Included site

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


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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.

Copyright © 2018 · Ronny Allan (NET Cancer Blog) – some images may also be subject to copyright

Selected feedback from supporters:

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 2016 Best in Show: Community winner.  “Internationally known Neuroendocrine Cancer Patient Leader – Ronny Allan is certainly making his mark on the online health community”
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Carcinoid Cancer Foundation wrote: “Blogs by Ronny Allan are a must read!” ….and: “Ronny Allan is one of our favorite bloggers – we highly recommend his blogs. He’s a fantastic advocate for neuroendocrine cancer and is definitely raising awareness …” ….and: “We look forward to reading all of your posts!”
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Macmillan wrote: “Brilliant Blogger”
Arisen Strength wrote: “Ronny Allan is dedicated to making a difference! And that makes him MORE than the challenges he faces!”
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CKN wrote: “You are a wonderful voice in cancer advocacy”
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Kanga Health wrote: “Proud to have worked on this project with some marvellous people including Ronny Allan (NET Cancer Blog)”
  • Dr Jane Maher, Cancer doctor, Chief Medical Officer at Macmillan Cancer Support. wrote “What a very helpful blog – for health professionals too”
  • Pheochromocytoma Support Foundation wrote “Ronny Allan is a wonderful advocate in the world of NET Cancer. We especially like him here, because he is so positive”
  • Northwoods NETS (Minnesota Carcinoid & Neuroendocrine Cancer Support Group) wrote: “He’s published a number of fantastic articles that take very technical topics and make them completely accessible for patients and their families to understand”
  • Dr Eric Liu (Internationally Recognized Neuroendocrine Tumor Surgeon) wrote: Great blog Ronny. Thank you for sharingandgreat job with the blogs. Keep up the good work” 
  • Maggie commented: “Carry on your good work Ronny, my consultant says he learns a lot from you!”
  • Lorrie commented: “There is a reason I keep coming back here again and again, and rereading your blogs – you have become a calming force in my life!”
  • Les tweeted: “Ronny Allan is simply inspirational”
  • Dorothy wrote: “You light up our lives Ronny”
  • Liz wrote: Your posts and words are so very very important for helping people understand more.  In terms of awareness, your methods are 100 times more potent than a zebra picture
  • Roddy wrote: As a newcomer observer of the world of NETs, it is amazing how much is happening, your blog and links and advocacy are gold dust”
  • Billy wrote: “I am always happy when I get a notification (one of very few that I allow) that you have posted something new to your blog. I appreciate your honesty and your approach towards the subjects you address. I can always count on knowing that you give a fair and balanced perspective. Thanks for that
  • Teresa wrote:Thank you so much. We have so many “blogs” websites, etc., that seem to cause me more anxiety than help. It is so refreshing to read your blogs. I always learn something new”
  • Su En wrote: “I am so happy that I have found you Ronny. You are expressing exactly how I feel and I no longer feel alone. Thank you so much for sharing your knowledge and experience”
  • Marilyn wrote: “Wonderfully written, poignant and, most importantly, so encouraging! Thank you!”
  • Dave wrote: “I’m very happy to have found your blog. You do a great job of educating without scaring”
  • Genevieve wrote: “It’s a very comforting thing to me! Please don’t ever stop!”
  • Helen wrote: “Ronny Allan’s blog is the greatest. A mine of information
  • ‘Vanuitdebuik’commented: “I am more convinced than before that patient stories are so important to the medical world (doctors, surgeons, pathologists, pharma industry, etc.) and for fellow patients. That proves the inspirational blog of Ronny Allan. What he does with his blog is phenomenal. He is an association on his own.”
    #800080;”>Theresa wrote: “Thank you for such a great blog. I have been following it and you provide information that should be published in a manual that every NET patient would benefit from the day they are diagnosed!”
  • Susan wrote: “Ronny, I’m so thankful for your well written blog. You may well help to save someone’s life”
  • Alex wrote: “The information in your blogs on everything from initial discovery to all the new drugs etc has made such a difference for me. I just wanted you to know that what you do is valued and absolutely worth it”
  • Sean wrote: “Thank you for helping me through the tough times with your blogs, you have genuinely changed the way I think for the better“
  • Ed  wrote: “You do such a great job raising awareness and your articles are so full of useful information. I just wanted to say thank you!”
  • Sue wrote: “The closest NET support group is over 300 kilometres away from here, so I use Ronny’s Blog as my support and inspiration
  • Cheryl (Psy.D) wrote: “Great guy & great blog. Never ending commitment to neuroendocrine disease & neuroendocrine cancer”
  • Lyn wrote: “You’ve given me the greatest gift … you’ve given me hope”
  • Paula wrote: “You should write a book! I would definitely buy”
  • Michael wrote: “The medical data, insight and experience Ronny collates and shares on his website and FB page on this disease (NET cancer) have been an enormous source of information and hope for me and my family”
  • Gaynor wrote: “To be honest, I don’t go anywhere else”
  • Lisa wrote: “Ronny is the most valuable resource that NET Cancer peeps have”
  • Leena wrote: “You do such great work even for us who have Neuroendocrine Carcinoma (NEC), God bless you!”
  • Catherine wrote: “Yours is the only blog I subscribe to. Essential reading.”
  • David wrote: “I have NETS websites (treatment and organisations that I read down to three now and you are included. So much info out there and can be overwhelming but I really like reading your site/blogs
  • Debbie wrote: “The best and most informative place on Facebook“.

A Selection of Featured Blog Posts:

Ronny’s blogs have been featured by various organisations – here’s a selection:

The following organisations have advertised Ronny Allan’s blog site by linking to it from their own website:

Carcinoid Cancer Foundation

Canadian Cancer Survivor Network

Cancer Knowledge Network

The Pheochromocytoma Support Foundation

The Pheo Para Project

Big Apple NETs

Northwoods NETS (Minnesota Carcinoid & Neuroendocrine Cancer Support Group)

Le Sourire de Sabrina

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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 Disclaimerclick here

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

Please  also ‘Like’ ronnyallan.com 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

Check out my Podcast (click and press play)

Background to my diagnosis and treatment – click here

Disclaimer – click here

Copyright © 2018 · Ronny Allan. NET Cancer Blog and RonnyAllan.NET, including all Facebook pages, Facebook groups, twitter accounts, Nuzzel accounts, Pinterest, Google +, Instagram. 

Site Rules:

Please note this site is totally non-profit, is not aligned to a particular non-profit organisation.  Whilst efforts have been made to update, any reference to fund-raising found will be related a now expired and closed event.  Additionally, any referencing of organisations which have a fundraising function is for their non-fundraising technical content and is not in any way a suggestion you should donate to the organisation being referenced.  No buying or selling allowed. All posts are moderated.

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58 thoughts on “Living with Neuroendocrine Cancer – Home Page”

  1. 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.

  2. 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.

    1. 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.

  3. 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.

  4. 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?

  5. 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

  6. 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,

    1. 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

  7. 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

  8. 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!!!!!!!!!

  9. 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!!!!

  10. 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.

    1. 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

  11. 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

    1. 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.

      1. 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!

  12. 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!

    1. 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

  13. 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

  14. 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.

    1. 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

  15. 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.

    1. Absolutely Jenny, this is precisely why I do this blog and my mission is to break out of the NET bubble (where everybody knows about it) into the wider community. More likes/ratings/comments/shares and follows will help. Also, I’m starting to see more external hits on my Facebook site http://www.facebook.com/NET-Cancer-Blog-476922399112723 I need to increase my ‘Likes’ so I can break out to the wider community on that media too. Help sharing these links is much appreciated

  16. 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.

  17. 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.

    1. 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!

      1. 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

      2. 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

  18. 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.

    1. thank you for the support Sharon, looks like we have similar dx! I got some distant lymph nodes still work in progress but not causing me issues

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