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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).
If you’re specifically looking for Ronny’s Blog, please look for the menu system (it will look differently if you’re on a desktop PC or a handheld device. If you wanted to read my most popular posts, click on the link or picture below.
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. Some key posts are filtered below on a menu system as found on his website.
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 was a member of the 2019 WEGO Health Patient Leader Advisory Board.
- Ronny is a member of the Patient Advisory Board supporting Ipsen’s patient website Living With NETs
- Ronny was a member of the 2022 Health Union Patient Leadership Council. Read more here.
- Ronny has been a member of various projects in healthcare including pharmacutitcal companies.
- Ronny is a member of Macmillan Cancer Support Innovation Community
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.
- In 2021, Ronny was nominated for 12 WEGO Awards, in the final for two of them and was a WINNER in the Lifetime Achievement category
- Click here to hear my WEGO sponsored 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.
Magazine Contributions and Features
- Ronny is a contributor to Cure Magazine and you can read his articles by clicking here.
- 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.
Recommendations and Reviews
- Read what others say by clicking here.
Presentations
Ronny has presented to many audiences, face to face and online. Some of these presentations are available online. Click the picture below or click here to see some of them.
click picture to see all presentationsContact Ronny Allan:
Please ‘Like’ Ronny’s ‘Neuroendocrine Cancer’ public Facebook page (click here and ‘Like’)
Please also ‘Like’ my public Facebook page (click here and ‘Follow’)
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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 the biggest and most popular Patient Support Group.
Sometimes you just got to climb that hill!
General Clinical Trials Disclaimer
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided in the clinical trials document. It’s very important to check the trial inclusion and exclusion criteria before making any contact. If you need questions, the articles here is very useful Questions to Ask About Clinical Trials | Cancer.Net
The inclusion of any trial within this blog should not be taken as a recommendation by Ronny Allan.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Things are not always how they seem
Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian’s Wall on the English/Scottish border. It was a fantastic
Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?
OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who
Colonoscopy Comedy
Last year I wrote a series of articles on the ‘coping’ side of cancer, one of which was about still being able to have a
Surgery – the gift that keeps on giving
I first wrote this article in December 2014. My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before
Piss off cancer, it’s 13 years since my liver surgery!
I’m still here I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no
Chocolate – the NET effect
I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice
A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive NETs
Update 12th January 2024 FDA Grants Breakthrough Therapy Designation to AlphaMedix for Gastroenteropancreatic Neuroendocrine Tumors (Lung and other Non-GEPNETs – see author’s comments below)
A Review of March 2024 on RonnyAllan.NET
I’m thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing
From Whipple to Waikiki by Jerry Chezick. Surf’s up!
An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
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Discover more from Ronny Allan - Living with Neuroendocrine Cancer
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Great info Ronny. Thanks! I was diagnosed PNET and NETML 8 weeks ago. I heard from other NET patients they have terrible trouble with teeth – decay, rotting, loss, dead nerves. Can you put up some info about how to avoid this please?
I don’t believe there’s any firm evidence of this being a general problem affecting all NETs. Or any type or any treatment.
Dear Ronny, I’m going to begin exploring your website for more information but I wanted to introduce myself and thank you for being someone who lends so much support to this community. For starters I haven’t been diagnosed yet. I have lost about 15-17 lbs since Dec. Flushing. First incident I remember was in December when I had a few drinks with friends but I didn’t think much of it at the time. Then I had a single drink in Feb and again flushing. I’m not a big drinker so just decided to not drink anymore. I assumed that my body was changing as I got older and I couldn’t metabolize the alcohol as well. Then recently I noticed I would flush randomly and I had a more pronounced flushing episode after I ate a big fatty steak. Combined with some black specks in my stool and bloating after eating and this sent me online to do some research. I came across this condition called carcinoid syndrome and I felt this sinking feeling as I read about the symptoms… I didn’t think my GI tract could be a problem as I’d just had an endoscopy and colonoscopy in Jan 2020 but what I didn’t realize at the time is that the small bowels are not included in the standard exam.
I went for blood and urine testing. My CgA just came back elevated at 121 ng/mL. The gastrin level was normal. I’m still waiting to find out the results of the 5HIAA test. I was on PPIs for about a week before discontinuing three days before the blood test and I’ve read that that can affect the results so I’m still holding out hope. I’m only 42 years old and this all seems unreal to me. I moved from NYC to Taipei in Sep of last year. I will be qualified for the Taiwanese health insurance on 5/10/2020. If I do have this condition I’m not sure I should stay here or head back to the US. I know there is special enrollment period in the US because of covid so I may be able to qualify for health insurance there. I suspect if I need to have a surgery for this that the US would be a better option since in Taiwan this condition is seems fairly rare and I’d want a surgical team with experience to handle this.
I feel overwhelmed… I’m not sure what my next move is. So far I’ve been battling to get testing done for myself. I’m assuming if all these test results all come back bad then the doctors will treat me as more of priority. What types of tests should I bet trying to receive next? Ga-68 scan? Other biomarkers for hormone imbalances? A biopsy to determine the grade of the cancer? If I have carcinoid syndrome would that rule out grade 3 (I haven’t been able to find out if grade 3 can cause the syndrome and obvious I’m terrified by the possibility of having grade 3 versus grade 1 or 2). How would they determine if surgery is appropriate for me? I’ve read that a big part of it is how badly it’s spread to the liver and that there is curative, debulking or no surgery if it’s really bad. How does one sign up for a surgery? How does one research who the best surgeons are for the procedure? Is there a long waiting list? Would I be expedited if they felt there was a chance for a curative surgery?I’m guessing I’d also need to have my heart examined to see if it’s been damaged before they’d operate on me. Could I first have another treatment option to perhaps knock back the cancer and then they do the surgery after it was shrunken a bit? Is that even possible? Is anyone ever cured of this if it’s spread to the liver by getting the surgery or is this then something which will always be with me? I know I’m just going on and on with questions. My mind is spinning at this point and I’m trying to make sense of this all. On top of that I haven’t told my wife yet so there are personal issues added on top of this. I really have no idea how to have a conversation like this with her (hey babe we need to talk, I have stage 4 cancer uggg) and on top of it her green card process will take over a year for approval since we left the US in a hurry and didn’t complete the process while we were still there. This means that if I need to go back to the US for a surgery I’d be saying good bye to my wife, potential for the last time. And then if I had the surgery and it was successful and I still had this, I’d hope to come back to Taiwan to be with my wife but I’m not sure if they have the medical technology and experience to optimally treat this condition. Anyway, I’m rambling now. Thank you for taking the time to read my rather long message. Any insights or advice are greatly appreciated.
Sincerely,
Don Spanton
You need a scan, CT to start with
“Neuroendocrine Cancer: Diagnosing the Undiagnosed – Ronny Allan – Living with Neuroendocrine Cancer” https://ronnyallan.net/2018/09/07/diagnosising-the-undiagnosed/
You need a scan, CT to start with. PPIs affect Chromogranin A rather than 5HIAA
“Neuroendocrine Cancer: Diagnosing the Undiagnosed – Ronny Allan – Living with Neuroendocrine Cancer” https://ronnyallan.net/2018/09/07/diagnosising-the-undiagnosed/
I am interested in joining your NET group. I was diagnosed with NET last February (2020), had surgery in May 2020 and am currently on lanreotide injections (6 months). However, I am not facebook user and do not want to sign up to facebook. Can I still sign up for your group?
Unfortunately it’s a Facebook group, sorry!
Hi Ronny, my 10 year old son tested with High serotonin in the blood due to tests performed by your allergist.
We got quite worried and traveled to the Arnold Children’s Hospital in Orlando where he was seen by an Oncologist-Hematologist. They performed a Pet Scan Galliun 68 and it came out without evidence of Nets, only with some enlarged lymphatic nodules in the pelvic area, Serotonin in urine normal and normal Chromogranin A (CgA) as well.
The doctor could not tell us the reason for his high blood Serotonin levels.
Any idea what we should do?
He did not indicate any medication for him. He said it was a rare and complicate case. We are looking for a Pediatrics NETs Specialist . Could you recommend us someone?
Thanks
Kelvin
the only one I know about is Dr Sue O’Dorisio (her husband is also a NET specialist) https://medicine.uiowa.edu/pediatrics/profile/m-sue-odorisio
Urine 5HIAA (metabolite of serotonin) is more accurate as serotonin fluctuates throughout the day. I hope this can be cleared up and you have my best wishes
Thanks Ronny. I appreciate your info.
April 21 2020
Hi Ronnie I have just diagnose with Neuroendocrine neoplasm. Did a ct scan it has not gone to any other organs yet. Now am awaiting a second endoscopy for them to try and take out the tumor. But because of covid 19 it’s put on hold. Hoping and praying that it can be done sooner than later.
best wishes, hope you don’t have to wait too long
Best wishes for a quick resolution
Hi Ronny – Newly diagnosed with low grade metastatic NET and awaiting additional results (dotatate PET and possible biopsy) for more information. We have a long way to go and it has been difficult to find clear information out there about. It’s been a strange journey so far for this “you look fine and I feel fine guy”. Your site and social groups are immensely helpful. Thank you.
Thank you, Ronny for everything you do, and I’ve only scratched the surface, and know it’s a lot. I’m recently diagnosed and my journey started on the internet like a lot of folks. When I finally learned the scary, actual search terms, your site was the second one on my google results. I felt like I got a hug, from a friend who just been waiting for me to show up. All ❤️❤️ From West Virgina.
Cheri
What a nice comment! Can I use it in my marketing? Just out of curiosity, who was the first site in your searching?
Thanks Ronny. I an Shlomo from Israel. I participatein MENETS, the local group, led ny Michael Rosenberg.
Your work is big help for our group.
Rhank you very much
Thank you, say hello to Michael!
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
tanks for the info, I will study the drug/trial. Best wishes to you.
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?
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.
Amazing story. On the basis cancer doesn’t pass from one person to another other than via hereditary, I would say it’s a complete coincidence
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.
We spoke elsewhere Evelyn
Can you give me names of carcinoid specialists in N J
https://polldaddy.com/js/rating/rating.js
Links are in here https://ronnyallan.net/2017/04/25/diagnosed-with-neuroendocrine-cancer-10-questions-to-ask-your-doctor/
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.
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.
thanks John and best wishes to your wife.
Very inspirational, best of luck to you Ronny!
Thank you Linda!
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?
great team, hope you get to see them!
[…] NET cancer patient and blogger, Ronny Allen, published a post awhile back entitled, “I’m only as good as my last scan.” That sentiment definitely resonated with me as I never know what to say when people ask me […]
Thanks for the mention ☺
Thank you, I might use this quote in my personal marketing if you don’t mind?
I absolutely love your information. It gives me and my doctor help when needed!
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
Thanks Scouse, a blast from the past! Hope you’re doing OK?
The spirit really makes me impressed!
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
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
Big welcome to you Hanka. I hope your treatment is successful. Keep me informed please 🙂
Hanka – google translate now embedded in each article
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!!!!
that’s a wide spectrum of requirements …. however, check out this document. http://www.cnetscanada.org/pdf/Pulminary_nets_Gridelli.pdf
I also suggest you join a specialist lung carcinoid support group who will be able to find other things faster than me! https://www.facebook.com/groups/lovablelungnoids/?ref=ts&fref=ts
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
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
what type please?
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!
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
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
Thanks Cheryl!
sounds like they caught you early and I hope you continue without problems. I had a colonscopy 20 months before dx but nothing was found, not sure if they did one of those special ones which can check the first part of the small intestine just past the cecum, perhaps not. If you get a chance, please like my Facebook site too…. https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723?ref=aymt_homepage_panel
Ronny
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.
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
thank you Jenny!
Hi Ronny, Ed here from http://www.carcinoid-cancer.com. Thank you for the follow. I didn’t know you were a neuroendocrine cancer patient as well. It’s great to find you. Maybe we can compare notes. I’m going to follow you too. 🙂
Thanks Ed, I also setup a Facebook page rhis week https://m.facebook.com/profile.php?id=476922399112723
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.
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!
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
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.
Hi Miranda, really sorry to hear that. Can I ask where you are from please?
Hi Miranda – if you want to message me on Facebook, I can make sure you are in the right contact with support groups for your country/area?
Great blog Ronny!
Sharon
Dx 2012, net cancer, small intestines w/liver mets. Stage IV
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
thanks Terry!
Good luck Ronny!
Good luck Ronnie!