Name: Jon
Neuroendocrine Cancer Site: Pancreas
Diagnosed: 2017
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Jon’s Story
When I was diagnosed with neuroendocrine tumours in April 2017, I had already been trying to get a diagnosis for more than three years – sound familiar?
Following a colonoscopy in 2015, I had been told that I had a mild case of IBS. Eighteen months later, in February 2017, having had a follow-up colonoscopy (result normal), I ended up in A&E, on the same day, in severe pain and vomiting! I was diagnosed with gallstones and an inflamed gallbladder, which was successfully treated with antibiotics (I eventually had my gallbladder removed in August 2018 when it flared up again).
A Chance Discovery
I suspect many of you may see similarities with your own situations where neuroendocrine tumours go undiagnosed for several years. My neuroendocrine diagnosis finally came by chance in 2017, as the CT scan, which showed my gallbladder problem, also showed a shadow on my pancreas.
Further investigations (including an endoscopy, biopsy and octreotide scan) showed I had a well-differentiated tumour of the uncinate process of the pancreas with lymph nodal mass in the mesentery and subpleural deposits and nodes in the coeliac axis. Of course, the colonoscopies I had had didn’t show the tumour on the mesentery because it is on the outside of the bowel! Although all the tumours were stable and low grade, they were non-operable, stage 4 and incurable.
Monitoring and First Treatments
I went for almost three years on a regular monitoring basis with no treatment and remained stable. In February 2020, there was some progression, and it was decided that treatment should be started. The use of Lanreotide injections or Everolimus tablets was discussed. As I recall, Lanreotide was the usual first-line treatment. I wasn’t keen on the idea of monthly injections, but Lanreotide was thought to be generally well-tolerated with fewer potential side effects than Everolimus. It was agreed that I should start on Lanreotide, which I did in May 2020. My wife learned how to administer the injection and did so each month for 20 months.
Exploring PRRT and Other Options
My scan in September 2021 showed a specific area of progression, which was behaving somewhat more aggressively than the rest of the disease. Following a further scan and an endoscopic biopsy, it was decided that I should undergo a four-session course of PRRT for which I was “booked in”. Although I was not looking forward to the PRRT process, I was very optimistic, as I understood it could have long-lasting effects in halting/slowing progression. Unfortunately, a subsequent octreotide scan showed that the disease that was progressing would not take up any radioactivity, whereas that which was stable would! PRRT was therefore not the answer for this specific area of progression.
Moving on to Everolimus
It was explained to me that in this situation, the treatment options included Everolimus (mTOR Inhibitor), Sunitinib (Tyrosine Kinase Inhibitor) or Capecitabine and Temozolomide (Cytoxic Chemotherapy). As, apparently, there was no convincing evidence as to the optimal sequence of treatments, it was suggested I try Everolimus in the first instance, as, on the whole, this is associated with the least toxicity, and if it proved effective in controlling my disease, could be continued indefinitely, whereas systemic chemotherapy often results in dose-limiting toxicity.
I felt very comfortable starting on Everolimus as following a Patient Support Meeting. Kate from the patient Support team put me in touch with a very helpful young lady (you know who you are) who had already been on Everolimus for four years – a recommendation in itself! I am very grateful that she talked to me about her experience and that helped to put my mind at rest
Having ceased my Lanreotide injections in the middle of January 2022, I started on a 10mg daily dose (tablet) of Everolimus. Blood tests in early February, one of which measured the trough level of Everolimus in my blood (25 hours after my last dose), showed it was elevated and within the potential toxicity range. I was told to stop taking the tablets, and after a few days and another blood test, I was started on a 5mg dose, which I continue to this day.
So, what’s it like living with my neuroendocrine tumours and taking Everolimus daily?
First, the positives: considering I have no gall bladder, have a tumour on my pancreas and one on the mesentery of my bowel, with the exception of grapefruit, I can pretty much eat and drink whatever I want. I don’t need to take Creon or alternatives that are causing others so much distress through lack of availability. The fact that I can eat whatever I want doesn’t mean I should or that I do, for reasons that will soon become apparent.
In many ways, I am quite fit, have a reasonably healthy diet, and, by exercising, biking and walking, manage the equivalent of 50,000 to 60,000 steps per week. I read quite a bit of fiction, watch TV dramas and try to keep up with world political, business and financial news. I enjoy music and am part of a U3A Guitar and Singing Group that meets weekly and a U3A Ukulele and Singing Group that meets fortnightly.
So far, since starting Everolimus, my tumours have remained stable, and my blood tests have all been satisfactory. I am touching wood at this moment! I had blood tests and a CT scan two days ago.
And the Negatives? I have a number of other chronic ailments, each with various symptoms, and for which I take eight other tablets every day. This ensures that life is not always a bowl of cherries! I also had a malignant melanoma on my arm, which has involved surgery and quite a few hospital visits.
As far as the neuroendocrine tumours are concerned, the biggest problem for me centres around my gut, from one end to the other: bloating, pain and discomfort, constipation to diarrhoea (and all stages in between). I am well stocked with Buscopan, Loperamide and Lactulose, although to be fair I don’t use the Lactulose much! I also seem to get tired/fatigued more easily these days, both in general and following physical activity.
Is Everolimus responsible for any of this?
My honest answer is I don’t really know. I’ve had a gut problem for a long time, which led me to seek a diagnosis. Is it worse than it was? It’s difficult to say when it can vary from day to day and week to week. Of the eight other tablets I take daily, only the humble aspirin has no warning that it can cause constipation or diarrhoea! Constipation or diarrhoea are listed as a possible side effect of all the others, but interestingly not Everolimus.
As for tiredness and weakness (fatigue) – I was 68 when I was diagnosed (and initially was frightened I may only have months to live). I am now 76 and wonder if it’s just that I am getting older.
Diabetes and Everolimus
There are two issues for me, which I believe are definitely side effects of Everolimus (one of them, the most serious, is most likely linked to Lanreotide too). The first of these is classed as an occasional side effect, and it’s brittle or broken nails. It doesn’t seem like much, but my nails split all the time. You can see the line of weakness, which culminates in a break at the end of the fingernail, which then catches on everything you touch! Quite often, a split will also occur at the side of the nail, which can get quite painful. This is, of course, more of an inconvenience than anything else. My response is to cut my nails very short and coat them with nail vanish! The effect of Everolimus on keratin can also affect your hair, and mine has thinned somewhat, but is still pretty much all there!
So, at one level, I have come through some three and a half years of Everolimus treatment relatively unscathed from side effects. I have not suffered from many of the not very pleasant quoted common side effects. However, there is one potential side effect that is really important to watch out for and to get treated if it occurs. Both Lanreotide and Everolimus leaflets refer to the need to monitor for a change in blood sugar levels.
In June 2019, my HbA1c blood sugar measure was 40. I started Lanreotide in May 2020, and by September, the HbA1c had gone up to 43. My surgeon told me I was pre-diabetic and would I consider going on an online (COVID time) Diet and Exercise course. I agreed and started the course at the beginning of November. At that time, I weighed 14st 7lbs, not as bad as it might sound, as I am 6ft 3ins tall, but overweight nevertheless. In December, my HbA1c was 37, and by February 2021 (just 3 months on the course), my weight was down to 12st 9lbs. By the way, I am now a stable 12st, sometimes a couple of pounds either way. Select here for further information.
In mid-2021, my HbA1c was 38. After just a couple of months on Everolimus in March 2022, it went up to 57! I suspect the initial 10mg tablet had a significant impact, as by May (and on 5mg) it had gone down to 48, and in October my Surgery measured it as 48 again. Two readings at this level are treated as confirmation that you are diabetic! I was started on Metformin in February 2023, and the next test at the surgery in April was 41. However, since then, it was 45 in 2024, and the latest is 49 (the target range when you have diabetes is 48-58). Maybe at some point, I will need increased or further medication.
It is worth a read of the paper from the Joint British Diabetes Societies for Inpatient Care Paper published in May 2021 (available here), which puts the risk of developing diabetes at 12%-50% with Everolimus and up to 30% with Lanreotide.
I took an optimistic view of taking Metformin, as there is some limited evidence that it may have some anti-cancer properties of its own and may also assist those of Everolimus. If you Google “Metformin and cancer”, you will see a number of items on the subject.
The onset of diabetes wouldn’t affect my choice of Everolimus, the great benefit of which is that one can keep taking it for as long as it is effective and side effects are manageable. I do have some concerns as to the effect diabetes may have on my kidneys, in particular, in the future, which then may affect my ability to be treated with any drugs that may harm them. Also, the specific area of progression which required the use of Everolimus was in the coeliac axis (which doesn’t sound too bad if you say it quickly!), but the actual effect is that the disease is encasing my aorta. That feels like a ticking time bomb, albeit stable at present.
Staying Positive and Grateful
Despite all this, as described above, I try to maintain a reasonably healthy lifestyle with very limited alcohol consumption, a good amount of exercise and a positive/optimistic outlook. My wife looks after me admirably and has done so for the last 51 years! I am grateful for and get great pleasure from interacting with all my family, especially seeing my five beautiful granddaughters grow into young ladies, which, in the days after diagnosis, I thought might not be possible.
Jon
Written August 2025