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Ronny Allan
Ronny Allan – Diagnosis and Treatment – Neuroendocrine Cancer
From diagnosis to start of treatment
The build-up to my diagnosis was covered in this blog article (Diagnosis – I’m no longer in Control). This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score. It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia. After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation, I ‘confessed’ that I had been experiencing strange facial flushing sensations since the beginning of that year and had noticed a change in bowel habits.
Then on 26 July 2010, I was formally diagnosed with Metastatic Neuroendocrine Tumours (Small Intestine NET). Official staging and grading – Stage 4 (T4, N1, M1), Grade 2. You can see me tell my story on this video – click here
At this point, the NET Multidisciplinary Team (MDT) direction kicked in. Further tests followed including an Octreotide scan which, in addition to what was found on CT scan, highlighted distant nodal ‘hotspots’ in the left axillary (armpit) and left clavicle areas (supraclavicularfossa (SCF) nodes). Specialist NET markers Chromogranin A and 5HIAA urine were conducted and both were elevated indicating tumour bulk and function respectively. Some retroperitoneal fibrosis was seen close to important blood vessels including the aorta and inferior vena cava (IVC).
An Echocardiogram confirmed no damage to the heart, an area known to be at risk due to fibrotic reactions that can often be caused by serotonin producing NETs. In September 2010, I commenced daily injections of Octreotide pending a detailed treatment plan.
Primary and Desmoplasia Surgery
My primary was eventually localised in the small intestine (terminal ileum area) together with extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas. I was initially amazed that so much damage could be done in relative silence. My primary surgery in Nov 2010 was preceded by a bland liver embolization. This was on the basis that there might be an opportunity to address liver metastasis during the surgery. However, this didn’t happen due to the extent of the work once I was ‘open’. My surgeon removed the primary plus many local and regional secondaries and included removal of 3 feet of small intestine including the terminal ileum, a right hemicolectomy, a mesenteric root dissection and a superior mesenteric vein reconstruction.
Additionally, with the assistance of a vascular surgeon, a tricky and high-risk procedure involving the dissection of the large block of para-aortic and para-caval tissue was carried out. This ‘plaque’ like substance technically known as desmoplasia, had encircled my aorta and inferior vena cava (IVC) almost blocking the latter. This was almost certainly caused by a fibrotic reaction to the secretion of excess serotonin from tumours within the gut.
Liver Surgery
Cancer had also spread to my liver. Following recovery from primary surgery, a laparoscopic liver resection (66%) was carried out in Apr 2011, but 3 unresectable tumours remain under surveillance. Shortly after this surgery a chemo embolisation (TACE) was attempted but had to be aborted due to routing issues which resulted from the primary surgery above.
Above the Diaphragm
Two distant hotspots were highlighted in my left axillary and left supraclavicularfossa (SCF) lymph nodes via Octreotide Scan. In early 2012, one axillary node was now palpable measuring 10mm on CT scan and I had a slight spike in Chromogranin A. Surgery was given and the subsequent biopsy proved 5 of the 9 removed were positive. This area is now free of cancer. Despite not being pathologically enlarged, 5 SCF lymph nodes were also surgically removed in 2012 but all tested negative on subsequent biopsy. The left SCF node area is still ‘lighting up’ on Octreotide scan and Ga68 PET/CT. In 2011, a small 3mm lung nodule was identified and continues to be tracked. In 2014, a new hotspot (described as a lesion) was identified in my thyroid via Octreotide scan. This lesion also lights up on Ga68 PET/CT, along with a new sighting in the left subpectoral lymph nodes in 2018.
My thyroid issue is currently ‘watch and wait’ following several inconclusive fine needle biopsies although a core biopsy confirmed fibrous tissue only. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the thyroid panel results indicating hypothyroidism. Levothyroxine is a thyroid hormone replacement. There’s an update to the thyroid issue following a Ga68 PET scan which shows intense uptake – read more here
Somatostatin Analogues
In September 2010, I commenced daily injections of Octreotide pending a detailed treatment plan but after my primary surgery in Dec 2010, I commenced long-term injections of Lanreotide. My hundredth injection took place in July 2018.
Pulmonary Emboli (PE)
I’m also on long-term anti-coagulants following the discovery of Pulmonary Emboli (PE) (blood clots) in my lungs after major surgery, discovered during a follow-up scan. I was self-injecting Clexane (Enoxaparin Sodium) from 2011 to April 2017 and then an oral version Apixaban (Eliquis) thereafter. To counter the threat of further PEs developing in subsequent surgeries, an IVC filter was inserted prior to the liver surgery referenced above. This filter remains there today and in hindsight, I now wish it wasn’t.
Miscellaneous post-treatment issues
I’m no longer classed as ‘syndromic’ and I mainly live with the consequences of cancer and its treatment. It looks like I’ve got mild Lymphedema issues in my left hand and loss of some nerve feelings in my left shoulder, almost certainly a side effect of the left axillary lymph node dissection in 2012 (according to the surgeon who carried out the procedure).
Postoperative issues include malabsorption and pancreatic enzyme insufficiency. It’s also possible that my hypothyroidism is connected to my treatment.
Latest Issues
May 2018. My blood glucose is spiking pushing me to pre-diabetic levels – this is under investigation. Lanreotide is potentially contributing, as is Creon. After 2 repeat HbA1c in normal range, problem subsided but remaining alert.
June 2018 – really bad chest infection, possibly pneumonia.
July 2018 – first Ga68 PET Scan – In July 2018, following my first ever Ga68 PET scan, much of the above was confirmed but added new issues (although some of them may have been there for a while, just not seen properly by conventional scans or by Octreotide scan):
- Left subpectoral lymph nodes lighting up on Ga68 PET.
- Uptake from retroperitoneal lymph nodes.
- Growth and potentially new areas of desmoplasia (retroperitoneal fibrosis). (seen on CT, Ga68 was a check for any avidity). Read about NET fibrosis here.
- Bone metastasis in right rib number 11.
September 2018
Dropped half a stone (~4kg) following a chest infection in June. Really struggling to put the weight back on but an increase in Creon is helping. January 2019, my weight is almost back to pre – chest infection level. Changed from Creon to Nutrizym to assess differences (in 2021, remain on Nutrizym and gaining weight).
December 2018
Renal MAG3 nuclear scan confirms no blockages to my kidney/bladder function. As a consequence, surgery appears to be off the table for now, but kidney surveillance continues monthly.
2019/2020/2021
Elevated Triglycerides, Vitamins E and B9. Been tracking every 6 months. Stopped Multivitamin Sep 2020. B9 was a one-off, back in normal range July 2021. Vitamin E gradually decreasing, almost back in the normal range in July 2021. Triglycerides back in range (but only just) July 2021, cause unknown.
July 2021 – second Ga68 PET Scan – no change to 2018 above.
June 2022. Diagnosed COVID-19.
July 2022. Annual CT. Stable but scan picked up ground glass opacity consistent with COVID-19 lung inflammation. Repeat in 3 months to assess. Vit E and Triglycerides elevated.
October 2022. CT scan confirmed ground glass opacity has receded (false alarm but see June 2023).
June 2023. Headline: “No evidence of recurrent/metastatic disease”. Confirmed 3 x fractured ribs from cycle ‘mishap’ (read about that here). I remain stable but there is still some odd lung activity yet to be determined (to follow). There are a few things I’m keeping an eye on, watch this space.
December 2023. Diagnosed COVID-19 for the second time. Then from viral to bacterial, i.e. chest infection following immediately after.
Summary
I continue to learn, I watch, and I wait to see what happens. In the meantime, I get on with life and don’t want pity. I’m thankful because others don’t get that opportunity.
Despite all of the above:
I’ve told this story (plus more) in various formats focused on what the sponsors wanted. You can see some of them here – “Let’s talk about NETs“
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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Hi Ronny, I just found out about your website and Facebook group and am super happy I did! It looks like you are doing extremely well and that is very encouraging. I was diagnosed with a Neurendocrine tumor in my ileum in 2015 and the cancer had matasesized to my liver. I had the tumor removed and was offered the Octreotide injections, but only did those for 5 months then quit them. I decided to connect with a Naturopath in my hometown that specilizes in Oncology patients as well as working with my regular Oncologist.. I have changed my lifestyle a great deal in the last few years which I think helps the growth of the liver lesions. I also had a liver emoblizim done in 2019 and it helped slow the growth of the tumors on my liver. I loved what you said here – I like to think I’m living with cancer, not dying from it.
My question to you – did you and/or do you the 24 hour 5-HIAA tests? If so, are you familiar with what a really high level woud be?
that’s difficult but one measure of risk I’ve seen is a score over 300 μmol/24 hour
Thank you so much for you response, that information helps a great deal!
Hi Ronny, Thank you for sharing your personal experience and your knowledge. I was diagnosed in April 2020 with gastric NETs with metastasis to the liver. Chemo treatments started right away and after 6 months of chemo I had a complete metabolic response to therapy. My gastric cancer is no longer detected on PET scan and my liver tumours have shrunk significantly and show no activity on PET scan. I am now getting scanned every 3 months to monitor for activity. I’ve been told there is no further treatment of surgery required at this time but I wonder if there is anything I should be doing differently? This is all still new and I have a lot of emotional upheaval post treatment, not to mention the painful nerve damage that chemo caused to my hands and feet. Trying to regain some form of a “new normal” to start living again, instead of waiting to die. It’s a struggle, but your blogs certainly help.
Live your life. Can I ask your grade please?
Hi,
I was referred here by a carcinoid Facebook group. I wanted to try and join your FB group, but I don’t have an official diagnosis yet. I have had many symptoms for awhile, but last year I suddenly was having episodes where I couldn’t catch my breath, I turned red from the chest up, I had diarrhea (all the time, but worse during these episodes), and I would occasionally get a little itchy and/or swell a little. I was tested for asthma and Mast Cell Activation. Those weren’t positive. I was tested for MCAS multiple times just to be sure. I have POTS and Ehlers Danlos and that is a co-morbidity. I had my CgA checked and it is 5x elevated. My 5HIAA is also 5x elevated. My dr suspected it would be 10x elevated for true carcinoid syndrome. I had an MRI with and without contrast. I had endoscopy and colonoscopy. I recently had a GA68 and those were all normal. My doctor referred me to a NET oncologist, but he won’t see me until we find an actual tumor. My doctors don’t know what to do. I’m not sure where to go from here. I don’t know if we should keep looking or move on. Do you have any thoughts? I know you know a lot about this cancer. Thanks so much,
Jessica
Sorry you’ve had to go through that. They’ve done a lot of checking but no tumour that’s unusual. Chromogranin A is not the most reliable test, for example it can be elevated by anti acid/acid reflux meds. And other issues. When I search EDS and POTS, I can see flushing and diarrhea are potential symptoms. The elevated 5HIAA is interesting but that has dietary restrictions that, if not adhered to, could have an effect on the result.
Read this article and anything linked, it might spark a thought
https://ronnyallan.net/2018/09/07/diagnosising-the-undiagnosed/
Thank you Ronny, you’re helping me in so many ways with my six year long fight, Luis. Australia
thanks Luis!
Thank you for everything, Ronnie.
I have really enjoyed reading through your site. I have had some unknown issues for a few years. First was hypoglycemia(no insulinoma found through testing), but did find triple elevated VIP. Octreoscan negative. Fast forward to 2018, I asked my gastro doc to please test my VIP as it had been a little elevated a few years earlier. It was no 23x the upper limit! I eventually had the “new” Gallium scan, and it was negative. So I sit in limbo.
I must say I do NOT have the diarrhea that is associated with elevated VIP levels. I do, however, have horrible GI issues for the past few years…bloating that causes shortness of breath and a feeling like my stomach/intestines just don’t work to propel anything forward. After reading your blog on flushing, I recognize that I’ve flushed for a few years now, and I’m just used to it. But what I also realize from your blog is, I have given up so many foods because they make my heart race. I had recognized them all to be the “tyramine” foods. This kind of hints to me that I might have something they haven’t found yet, and I NEED a specialist!
The thing is, when the 23x elevation was discovered, I called up my somewhat local world-known cancer place to get in with a specialist, and the people that answer the phones and emails said that if I’m not having diarrhea, then they won’t see me, that I must not have a true VIP issue. So this is not being looked at in depth.
Any thoughts on what my next step might be?
P.S., I’d like to join your FB group if possible.
did they test pancreatic polypeptide? And how many times was VIPoma tested?
Pancreatic Polypeptide was tested at the time my VIP was just at 3x the upper limit, and it was in range. That was about 4 years ago. I don’t think it has been tested since. I have had CgA tested, and it was normal. I had VIP tested twice between 2018 and 2019, about 6 months apart, and the results were fairly close to each other, around 1400ish, or around 23x the upper limit.
and how can evolution be stopped? is there a treatment for this? How are things doing to you?
incurable cannot be cured by definition but Neuroendocrine Cancer patients can live for a long time. Core treatments are somatostatin analogues with targeted therapy such as Afinitor (Everolimus) or systemic therapy such as Lu177 (PRRT) for progressive cases.
Hi Ronny. I have just started blogging. My husband has pulmonary NET operated in 2017. He had 9 months treatment with interferon alfa 2B. After that, from July 2018 with sandostatin. This year the chromogranin has grown a lot. CT and bone scintigraphy resulted in liver and bone metastases. Gallium PETCT confirmed the diagnosis.
He is currently doing PRRT with lutathera (he has just completed cycle 2). From what I read PRRT can have results on the liver, but the bone?
From your story I understand that in 2018 you had the same problem. How was it treated?
As far as I know it will not resolve bone mets, don’t believe there’s any data to support that
Ronny, you write with such clarity, substance, and first-hand knowledge of NET! I need to learn so much to support my 67yo sister in Minnesota
who was dx’d in 2016 with NET (primary at terminal ileum). Thank you for sharing your God-given talent. Best wishes. –Ann Hanson, Silver Spring, MD
[…] this first. This was easy for me as I had written a patient story well before my blog was set up. I had all the medical letters and reports so it was relatively easy […]
[…] this first. This was easy for me as I had written a patient story well before my blog was set up. I had all the medical letters and reports so it was relatively easy […]
[…] this first. This was easy for me as I had written a patient story well before my blog was set up. I had all the medical letters and reports so it was relatively easy […]
[…] this first. This was easy for me as I had written a patient story well before my blog was set up. I had all the medical letters and reports so it was relatively easy […]
[…] this first. This was easy for me as I had written a patient story well before my blog was set up. I had all the medical letters and reports so it was relatively easy […]
Is PRRT the same as PEN 221. I should be going soon to MD Anderson Cancer CTR, Houston, TX for a consultation to take PEN 221. If they are not the same, please tell me your opinion about PEN 221. Thanks
The theory is the same. You get a drug administered intravenously (IV) and it binds to somatostatin receptors on tumor cells and then attacks them. However, I can’t find enough info on what’s in the drug etc to make a comparison. The treatment for Grade 1 and 2 WD NETs is every 9 weeks so comparable with PRRT. The primary outcome of the trial is connected to high grade tumours (Grade 3). The trial doc is here https://clinicaltrials.gov/ct2/show/NCT02936323 The manufacturer is here http://www.tarveda.com/PEN-221.html
Thanks Ronny. Really appreciate what a treasure trove of information your blog is. Hearing your story is a source of hope and encouragement to just keep going. My story is much like yours but I was only diagnosed December 2016. Quite advanced at diagnosis. Nets in small and large bowel metastisized to liver and bones.
I transferred from local hospital to treatment and consultant at Royal Free.
What a positive move.
Lantetide and octreotide for the carcinoid syndrome. Was on Clarinet trial for six months but had to come off as not holding the spread and growth.
Had second Galian 68 scan a week ago. Checking for possible growing blockage in bowel. Waiting for result and trying to remain positive.
Eating difficult as so many foods that do not work for me so losing weight. Also challenging to find a way to absorb nutrients. Life is still good.
I was diagnosed with neuroendocrine carcinoma in Oct. of 2016 at the age if 45. I been through 2 surgeries and was receiving lanreotide shots and I have recently started Lutathera treatment. One treatment down 3 to go. I haven’t been following since my diagnosis in Oct. 2016, but was looking for anyone who is going through this treatment as well. Thank you
You would be better asking that in my group https://m.facebook.com/groups/157067628225670 Carcinoma is an interesting word in NETs, are you a high grade (grade 3)??
Very impresive .Keep on!!!!I I was diagnosened with pancriatic Net with mestasses on liver.Today under Biologic treatment.I was observed many years ago and still i am here fighting…..
The more I read the more confused sometime…lol..but I understood and enjoyed what I just read. So how does one carry on in life as far as nutrition to help this condition from growing. Do I try to keep following the “cancer cure protocols”? Essiac teas..fruits vegetables..juicing.. supplements…..etc. What do you do or follow…. Thanks for all your support….this obviously is a full time job for you. Sara
thanks for the comment. It’s easy to get confused, I’m still learning after 8 years – although I do have a learning and inquisitive nature which helps. I think the nutrition is a supporting measure. However, it can be a dangerous area for the uninitiated. Celebrity food fad diets and the like (where someone is selling something behind the hype) need to be watched, particularly as some patients share these within forums without having done their due diligence on the content. For example, essiac tea has been debunked by several cancer research organisations. I find it best to stick to the basic info you get from a NET specialist dietitian. Your question actually covers around 10 of my articles!
Thank you ..I’m not sure I’m aware how to get into all your different articles..need some guidance… thanks… Sara
Are you also on my Facebook pages?
RonnyAllan.NET then for new posts. You can also see a list of articles newest to oldest in order somewhere on that page depending on what machine you’re using (works best on desktop PC). Google “Ronny Allan Nutrition”
I was diagosened with a large tangerine sized tumor in my left lung last September had a left lower lung lobectomy and further tests reveal some abnormal areas on 2 vertebrae. Thank you for all the comments which have helped me to come to terms with everything
Hi I read your article with great interest. I was diagnosed with NET primary in pancreas spread to liver in July last year. Had chemo (cistplatin and vp 16) and radiation (true beam technology). This was followed by 6 injections of Somatuline. . PET Scan revealed an all clear. I’ve lost my mom to colon cancer and my daughter was diagnosed twice with a soft tissue cancer (2012 & 2013). This has made me brave relentless and bold. Nothing fazes me anymore!!
Hi Samantha, your story very moving. I’m glad you have the all clear. My husband has pancreas primary spread to liver and bones. I haven’t heard of the treatments you have had. Where do you live? l agree it makes you stronger and apreciate everything.
My brother is suffering from metastatic neuroendocrine tumor (Paraganglioma) which is secreting catheclomines. Head and neck are affected. 2 surgeries done but tumor reoccured. PRRT is suggested 3 out of 6 cycles done but no improvement is seen. Size is getting doubled at very faster rate.
I am hopeless.
sorry to hear about your brother. Please note I have a private group where you may speak with others. https://www.facebook.com/groups/157067628225670/
Wow thank you for sharing your story. My mum has net which has metastatised originating in the mid gut area!!! It’s so nice to read your comment about living with Cancer rather than dying from it!!! I wish you success on your lanreotide injections, these were not successful for my mum as she is currently participating in a clinical trial based on the lanreotide with a radioactive isotope attached to it so it’s a wait and see!!!! Good luck for the future and you stay in good health💚
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Did your mother’s treatment with the radioactive isotope was it called PEN 221? I have been waiting to have my interview at MD Anderson Cancer Center in Houston, for this treatment.
Thankyou for sharing your diagnosis.
I have been diagnosed in Dec 15 with NETS with primary in Small intestine and a mass in gut of 6.5 cm. I feel I have had since 2014. Symptoms were mis diagnosed as menopause.
The tumour in my gut can’t be removed as area has many major arteries which causes complicated surgery.
I am having injections every 3 weeks of sandostatin LAR 30mg and happy that it is being controlled at this stage.
The only downfall is I have damaged kidneys and they are trying to find the problem.
This has prevented me from being a candidate for a clinical trials.
Not sure what to do now as I feel that’s it.
Just looking for other avenues I can try .
Reading other people’s treatment and views help
Thankyou
Barb.
sorry to hear about your kidneys Barb. Are you in my private group? https://www.facebook.com/groups/157067628225670/
G1 NET found during routine colonoscopy. Just found out today. Let the tests begin. Only major concern, I have had flushing in my ears/face for years. Thank you for your blog, it helps.
good luck
So glad to have found this. I had surgery in 2010 for neuroendocrine tumor on my pancreas. Haven’t had any problems until the last couple months. I also have Crohns disease. I went in to have a hernia checked and they discovered a large tumor plus several small tumors on my liver. They also found a couple hot spots in a hip joint and T4. I go in tomorrow for a liver biopsy. It’s been comforting to read your post and all the comments to reassure me that I’ve got this! Thank you! So glad I found this! Now I just need to find your blog!
Good luck with the biopsy, you’ve found my blog, this is part of it. My facebook sites are also interesting.
My husband has just started Afinitor, he has dreadful ulcers in mouth and throat. He has wide spread cancer, which l think is responsible for worrying weight loss and fatigue. In his case, so far PRRT has been amazing. However the effects have now warn off after 2 years.
Some of these drugs are really tough on the system, l feel especially for patients that have a large amount of disease. PRRT shrunk the cancer by 2 cm – this was enough for my husband to lead a normal active lifestyle again. It is such a fine balance
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Hope he’s doing better. Yes it is a fine balance
PRRT treatment
It has been recommended for me and I am terrified of it, sounds awful. So pleased it has helped with your husband.
Hi Ronny, glad I found your site. We live in Ontario, Canada and my father (now age 71) was diagnosed with Neuroendocrine Cancer in Nov 2010. Like you, it was found by chance. Spot detected on the liver during an ultrasound, biopsy came back inconclusive, surgery to remove it and ended up taking 60% of his liver. Further scans showed primary source was the pancreas where he had a second surgery to remove a spot (as well as spleen and gallbladder preventativly) in Feb 2011. One year after surgery more small spots were discovered on the liver. He was placed on Afinitor which has worked amazingly for 5 years! Recent scans now show it’s no longer doing its job and spots have doubled in size. Chemo has been given as an option by his local oncologist. We are off to the Net Clinic at Sunnybrook in Toronto to meet with a specialist and explore possible options, perhaps Sutant or another drug if we can get coverage. What seems to be our biggest problem is exhaustion. He has absolutely no energy to do anything, even standing for two minutes, taking a shower, getting dressed is completely draining. Have you or anyone else ever dealt with cancer fatigue? No doctor seems to be helping us with this and it’s really the only issue that’s currently debilitating for him. As a family we are feeling helpless.
sorry to hear about our Dad. Fatigue is a big issue and there’s no real book answer because there are so many factors involved. One thing that does effect fatigue is nutritional deficiencies that might be as a result of surgery and treatment. I know this happened to me and I had to take supplements. In fact those with NETs, in particular those who have had abdominal surgery) are recommended to be tested for ADEK and B12 (the latter is well known to cause fatigue when too low). I was tested and was borderline B12 and deficient in Vit D. I now take supplements and they help. I also try to exercise and get 8 hours sleep. Difficult and it’s not an overnight change but I seem to have a reasonable level of energy. As Sunnybrook about this.
Thanks for your quick reply Ronny! Believe it or not his Vitamin D results came in yesterday and he was 18! Range should be from 75-250. Needless to say they have started him on a D supplement right away, as well as a few other things to help with energy. Doctor says he should notice a difference in 5-7 days. I also introduced him to your site, and he was wondering where you are from?
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I’m in UK but I speak and write for everyone!
I also suffer with NETS also with Fatigue and have decided to become vegan and to see a dietitian with the cancer council nurse. She helped with maintaining my trace elements, mineral and vitamin, iron intake . Since doing this 3 months ago I feel a lot better. Even though I have a minimal menu. I am enjoying being more energetic and not suffering with bowel and gut issues.
Thankyou
Barb
Hello Barb
So glad you found the right diet
I am preparing meals tried many different diet n do not see any changes in diarrhoea weight loss
I’m interested to learn from you the diet that have stabilised you
Thanks
2013 diagnosed with bowel cancer. Now neuroendocrine cancer.
sorry to hear Yvette. Which country are you in?
I’ve just been diagnosed with NET. I don’t think understand how I can feel so good but have Stage IV cancer.
I’m glad I found your page.
A common feeling but one you’ll get used to. Stage IV NETs is not the red flag that might be the case with more aggresive cancers. Thanks for supporting my blog etc
My recent CT scan has shown that despite 6 months of lanreotide injections, the cancer in my liver has grown and multiplied. The lungs and bones are still stable. My doctors are now considering putting me on either everolimis or CAP-TEM. I’m read information about both of them but I’m also interested in any patient personal experience. I understand that the side effects can be a challenge. Thanks for your insight!.
This is not like a forum hear but from what I read the side effects are mainly tolerated quite well by most. Good luck with your treatment!
I tried afinitor 10mg and was on it for 4 weeks. I really had a bad experience with it. Face breakout (did not bother me so much, nose bleed only for one day. Horrible diarrhea accompanied by huge hemorrhoids, fatigue. The worst reaction was the edema in my toes, feet, ankles and legs. After 5 weeks I still have the swelling and pain. My last office visit they think I may have Lymphedema. I read that it could be caused by afinitor. I am going to a Lymphedema clinic. This is only my opinion but I would start with 5mg and then go up on the dose if tolerable.
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Thank you for your thoughts! I’m on Afinitor now at 10mg. My side effects, after 2 weeks, are not great either so will try the 5mg next cycle. I so hope you find a drug more manageable.
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Have. You tried Afinitor? I have been on it for a year and a half with no new liver tumors and no growth on the other tumors.
I was on 10mg of Afinitor for 1 month and then was switched to 5mg because of side effects. I’ve been on the lower dose for only about 10 days. I will have my CT scan done in mid December which will hopefully show that it is being effective. What dose are you on and how do you manage the mouth sores, skin rash etc.? So glad your results are promising Candy.
My husband starts Thursday with Afinitor. Does it cure/ reduce symptoms. My husband has unfortunately got some of the possible side effects from the cancer alone, just a bit concerned he will get worse not better. It seems that people react very differently to this treatment.
Lisa
I’ve heard people who have had symptoms but they mostly seem to be tolerable. I’ve also heard this drug has made real differences to people’s quality of life. I don’t believe it’s a cure but people have reported tumor reduction.
I have a pancreatic NET diagnosed in 2010 and have done CAP-TEM 3 separate times, 3 rounds in 2014, 4 rounds in 2016, and 6 rounds in 2018. I had no side effects from the treatment other than a slightly increased urgency associated with bowel movements, The first 2 times I had my liver metastases disappear and the primary tumor in my pancreas decreased in size by over 1/3. The most recent course of CAP-TEM I failed with greatly increased liver mets. I just had a dotatate PET scan yesterday and am a great candidate for PRRT, which we will pursue and hope to get approval by insurance to be able to start treatment in December 2018.
Good luck!
My recent CT scan has shown that despite 6 months of lanreotide injections, the cancer in my liver has grown and multiplied. The lungs and bones are still stable. My doctors are now considering putting me on either everolimis or CAP-TEM. I’m read information about both of them but I’m also interested in any patient personal experience. I understand that the side effects can be a challenge. Thanks for your insight!.
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Sorry to hear, Lanreotide has anti tumor effects but it does not have the same effect as a targeted tumor drug. Everolimus (Afinitor) is a targeted biotherapy and CAPTEM is essentially a cytotoxic chemo. I’ll try to find some links to personal experiences.
How long have you been taking Afinitor?
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I’m not on Afinitor
Hi Ronny, many thanks for your response. My husband has grade 1metastatic , pancreatic primary, also in liver, spleen, bones and although slow growing it has managed to be very invasive. He has had 4 sessions already. The specialist did say he may be able to have more, but not sure when. I read an article claiming that another dose of 4 can cause leukaemia. I also heard of a lady in Scotland having 6 sessions, 11 sounds exceptional.Side effects of the two treatments you mentioned do seem typical of chemotherapy. I thought Evrolimus was taken off National Health. Here’s hoping the big scan has no nasty surprises! Many thanks again for your time and thoughts. Lisa.
Afinitor and Sutent are not really chemo, more biological therapy or ‘targeted’ therapy. They are now back on the NHS by the way – quite recently. Re PRRT, yes doseage can be key with PRRT which is why people are seriously looking at personalised doses (the lady with 11 is with a centre that does that as far as I know). Europe is ahead of USA I think.
Good evening Ronny, many thanks for that information. We have the ‘big sit down’ and scan results on Wednesday. This gives us a lot to put on the table. Huge thanks again.
Lisa
Been taking Afinitor for the past 2 years along with Somaluline (lanreotide)120mg injection. Oncologist started both drugs simultaneously after my operation to remove the primary tumor in the pancreas.Had a few scattered mets in the liver but they shrunk significantly according to recent gallium 64 scan.Now, I get 2 yearly CT scans instead of 4. Things are looking great for me. I will never surrender.
Gallium 68 or Cu 64 ??
p.s. I think I picked you up on my facebook page here https://www.facebook.com/NETCancerBlog/ I post a lot more on this page than I do here
Will chat on Facebook in future as well, just need to set my page up 😊
Hi Ronny,
I have just found out your blog, and really enjoyed some of your posts. You articulate very well some important points that are not easy to express and that I have never found so well written in other places (namely, how after some time you learn how to befriend your cancer and the overwhelming fear of confusing treatment side-effects with disease progression).
I am now more than 17 years down the line: diagnosed in april 2001 when I was 31 (surgical resection of small primary in the ileum), normal HIAA and CGA and imaging until 2010 when CT revealed an abdominal mass and a number of small liver lesions. New abdominal debulk, but the surgeons decided left the liver quiet (removed only one lesion for staging). I have well diferentiated (Ki67<2%) lesions, and enjoying my stable disease for the last 7 years with only monthly sandostatin LAR shots. My CGA is slowly increasing and my bowel symptoms are worsening every day, and I am dreading the Ga68 scan that I will do in a couple of weeks. Fortunately I am a professor in a medical school, and have access to Ga68 and PRRT in the hospital across the street.
All the best to all NETs out there,
Vasco
Thank you fornyour comments. Yes, its a difficult balance to find. The Ga68 Scan would also worry not least due to the possibility of false positives but OK if you have experienced radiologists/oncologists. Good luck with everything!
I have an MRI every 6 months, and this will be my 4th Ga68 scan, but the last one was in 2014… Let’s see how things have evolved since then.
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Hi Ronny
My husband was diagnosed after 3 years of going back and forth to G P. He has a grade 1 in his liver, pancreas, bones, splean and bowel. This was 2 years ago. He hasn’t had surgery and chemo didn’t work. PRRT has been amazing, and year on he is riding his bike! He has his big scan soon..fingers crossed. You are very inspiring..glad l found you!
Good to hear he is doing OK. Best of luck with the scan! Give him my regards.
Hi Roni, hope the holiday is going well. Our consultants has advised Sunitinib
as the next form of treatment. He has had PRRT a year ago, previous to that Streptozotocin and Capcitabine (which did nothing but damage his kidney.
I don’t think they will operate because of the bulk of his disease.
Have you had any research into Sinita nib please? I’m feeling that appart from surgery and PRRT there isn’t much else. How many times can you have PRRT? I have heard twice.
Sorry for wafling on, grateful for any advice.
Hi Lisa, I know that Sunitinib (Sutent) is one of the key targeted therapies out there. There’s also Everolimus (Afinitor) which seems to be more widely used. I do know that some patients have issues with the side effects but they are mostly tolerable. What grade is he? The current PRRT regime is 4 sessions maximum but work is ongoing to personalize dosage. I know one lady in Europe who has had 11 sessions.
Hi Ronny
The information and time you have have been putting into your blog over the years is amazing (especially at such a difficult time for yourself) and must be helping many people at such a difficult time. My mum has just been diagnosed with neuroendocrine carcinoma. Can I ask if this is different to what you were diagnosed with. It’s just that I read a comment from Liz below on the 14th August 2016 who unfortunately lost her daughter. Under it you ask if it was neuroendocrine carcinoma which is better known as grade 3 and I’m a little confused now. Thanks in advance for any light you can shed on this matter.
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Neuroendocrine Carcinoma us indeed Grade 3. These are Neuroendocrine Cancers but are mire aggressive normally poorly differentiated which means the look and act like aggressive cancers such as lung, colorectal, pancreatic, etc. Treatment is quite different. I have a Grade 2 well differentiated NET. There’s now two different grade 3 classifications. See my blog Staging and Grading
Ronny after two years of operations… midgut explosion that sent me into septic shock, then finding the “tangerine” in my liver and removing same (docs always use a fruit reference… 😉 ), I was put on lantreotide after this two year journey… back to Stanford next month to have a few nodes removed and to keep an eye on my liver that has four lesions… I ran across your wonderful work while exploring the drug I was just put on..
Keep up the good work my friend, you’re an inspiration !
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Thanks! Hope you’re doing OK
Mark
Your case or situation is similar to mine.
However, things happened more rapidly here
in the Chicago- land area.
Thank you for sharing. This helps me and most likely others to hear your stories.
How are u now?
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Vicki, nice to hear from a fellow traveler… my disease is still progressing and we’re hoping the lantreotide will slow it down… I’m back to Stanford in two weeks to have two lymph nodes removed we’ve been watching for years. I also have some small lesions on the liver we’re keeping an eye on. I feel great, exercise five days a week and frankly don’t let anything slow me down… I am considering having a zipper installed however… It appears I’m destined for a few more operations.
Hopefully you’re condition is stable… and I’m hoping the lantreotide does that for me.
Best !
M
Hmm. Funny enough, this is how I describe myself: I’m not dying from cancer; I’m learning to live with it. Yes, I look good, but my doctors are trying to see how many organs I can live without! And on 14 Feb 2017, I plan to say I am here 10 years down the line.
Fantastic 😄😄😄💪👏👏💪💪
Thank you so much for this site. I am recently diagnosed with NET in my mesentery. Attempt to remove the tumor was not successful because of arteries and veins going through it. I am now in the process of being referred to MD Anderson Medical Center in Houston, TX.
Welcome and thank you. I wish you good luck at Houston. Please like my main Facebook here https://www.facebook.com/NETCancerBlog/ and I also have a chat group here https://www.facebook.com/groups/157067628225670/
Just recently diagnosed in July grade 2 with a .2cm on liver. My question is what does your diet consist of? I eat very little meat more vegetarian no processed sugar and bought an ozone generator that makes water. My last hiaa test was 6 outta 15. I haven’t got the results of the CGHA yet. I’m looking forward to the next scan. Doc wants to put me on the shots. He says my prognosis is good.
I keep it pretty simple. I was never an adventurous eater so that made it easy for me. I mainly have porridge (oatmeal) for breakfast, toast or a sandwich for lunch. Evening is normally meat (mostly chicken, fish, lamb, beef), potatoes of some sort and some vegetables). I try to get protein, carbs and fibre (but not too much fibre due to surgery). I snack in between, mostly naughty stuff to try to keep weight on. I watch my sugar intake as best as I can.
Ronny,
I love your blog and would like to connect. Drop me an email at pat@anticancerclub.com if you would!
Thank you! Happy holidays!
I have MEN1 and have had several surgeries. Just found out I have a nueroendocrine tumour under my left armpit….I meet with the doc tomorrow…freaking out,
Don’t freak out, it’s an easy operation. I was in and out same day. Few bouts of fluid collection build up which is pretty normal. Fine needle aspiration sorts, pretty much painless. Make sure they biopsy something. How did they spot it?
Thank you for sharing! I am new to NET! In the process of diagnosing! I had a CT scan and found a 2.1 by 1.6 tumor in the left side of mesentery ! My liver is ok! My 24 hour urine test is ok, my Chromogranin A is 141 should be under 90. I am seeing a surgent tomorrow. What would be the best test to diagnose NET? Octreotide Scan? Wish you well! Thank you in advance for your help! HUGS!
You need evidence of tumours, so CT scan would pick up most. CgA and 5HIAA for the most common types would confirm tumour bulk and functionality respectively. Follow up Octreotide and/or Ga68 scan would confirm spread (stage) …… it would also confirms tumours are avid to somatostatin analogues (i.e. receptors are good), this helps with treatment plan. Ga68 is newer, less available and more sensitive. Biopsy would confirm grade (aggressiveness). Is your surgeon NET aware?
sorry I didn’t respond to this comment. Hoeever, I think we communicated by another system?
I’ve been in a blur, the Twilight Zone for a little over 2 years, since my daughter was first diagnosed with NET Cancer in February of 2014. First diagnosis we were told she had 5-7 weeks to live, then it was 5 months. She was a fighter and lived for 2 years, passing away on June 15, 2015. It was a rollercoaster ride of being in and out of the hospital, rehab, being told to make final arrangements….I will be reading your blog very closely and get every bit of information I can. I always felt, and still feel that something was not right about the treatment my daughter was given.
So sorry to hear about your daughter Liz. Was she grade 3 (sometimes known as Neuroendocrine Carcinoma?)
Thank you for sharing this with us, actually, my wife has a NET in deodenum with liver & lungs metastatic, your experience will help her for sur….
As a fellow zebra – but with metastatic pheochromocytoma, I commend you for sharing your story with such clarity and poise. We need more people spreading the word, I do so much appreciate reading your blog. Thank you 💛
Thank you pheofabulous.
Ronny, Wow! Sounds like you have been through a lot. I hope you are doing well. I am happy to have found your blog. Will continue to follow you. Just a little background on me: 2008 symptoms of neuroendocrine cancer show up, then go away a few months later. 2011 symptoms return, diagnosed with neuroendocrine cancer in the ileum; surgery to remove it; symptoms go away for 2 years and return. Tests reveal the cancer is active again, octreotide scan shows tumors in liver and brain; I think I started Sandostatin then. Radiation to brain reduces size of baseball-sized tumor, but I had to medically retire in 2015 due to memory issues. Been getting monthly Sandostatin but two new brain tumors showed up. Now my oncologists want me to do the Cap-Tem regimen but I want to address the issue with diet first. I will do Cap-Tem in a few months. I plan to follow your blog.
Enrique Ortiz
Thank you Enrique. Sorry to hear about your issues. You will most likely be having nutritional issues from terminal ileum surgery, check out my Nutrition blogs 1, 2 and 3. If you cannot find them let me know.
Hi where are your nutrition blogs? I have been recently diagnosed and operated on.
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Thank you for sharing this. The more we talk about things the more we can change things.