Name: Terrie
Neuroendocrine Cancer Site: Small Bowel with Liver Metastases
Hospital: The Christie Hospital, Manchester
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My name is Terrie, I’m 77 years old and have been married to David for 55 years. I’m also happily retired, despite my diagnosis of neuroendocrine cancer in the small bowel.
I had been struggling with tummy pains, diarrhoea, tiredness, and unexplained weight loss during the summer of 2022 and visited our GP in the August. Luckily, I was quickly referred to a consultant who carried out an endoscopy and colonoscopy which just showed some diverticular disease.
He ordered a scan “to be on the safe side” in October 2022 but I heard nothing back and carried on taking IBS medication prescribed by the GP to relieve ongoing symptoms. My weight loss continued and then I received my scan result Christmas week showing 2 liver lesions – and things happened quickly after that.
I had 2 more scans days after a call from our GP, followed by a consultant appointment on 5th January. This was when I was told it was probably neuroendocrine cancer – and I had a liver biopsy 2 weeks later.
Diagnosis
My diagnosis was confirmed and in March, I was referred to The Christie, NET Centre of Excellence in Manchester. More scans followed and I was told I had Well Differentiated (WD) NETS, Grade 2, with a K167 of 19%. My primary was in the small bowel and mesenteric mass with multiple liver metastases. I was told: Primary site is “too high for surgery”. And you must have had it for years.
Treatment
I started Lanreotide injections (SSAs) straight away, in March 2023. A nurse came to the house to show me how to give it to myself in my leg. But on arrival, the nurse decided my legs were too thin for self-administration into the top of my thigh, so they still come to my home every 4 weeks to do it in the upper outer quadrant of my bottom for me.
After three months, and then after 6 months, I had more scans – but in October 2023 there were already more liver metastases and an increase in the size of existing metastases.
PRRT (Peptide Receptor Radionuclide Therapy), a form of nuclear medicine, was discussed but my doctors decided to keep that for possible future use and for now, to try chemotherapy instead.
I started a course of chemo in tablet form, known as Cap-Tem. Capecitabine was prescribed to be taken twice daily for 14 days, then Temolozomide was added for the last 5 days of the cycle with a prescribed antiemetic (for any nausea). Then a lovely 2 weeks off until my next cycle. I receive my Cap-Tem by Special Delivery post and then have blood tests every 4 weeks. These are done nearer to home as The Christie is 40 miles away. A scan after 3 months showed “responding to treatment” and to continue the Cap-Tem. A repeat scan after 6 months, in March 2024, showed no new metastases, and tumours stable. My monthly Lanreotide injections continue as well, so I do need to pace myself.
Side Effects
Like many patients facing new treatments, my first cycle of Cap-Tem was very worrying. I read the leaflets about possible side effects, but I really don’t think this is a good idea! I can’t think of any possible side effects not listed and of course, you don’t get them all – everyone is different. I worried most about possible hair loss. My consultant told me it might get thinner but that I would not lose it completely. In fact, after 7 cycles of chemo, my hair is just a bit thinner and drier, but otherwise fine. And to be honest, only I notice.
Cap-Tem definitely makes me more tired, and I have learned to be kind to myself and stop for short rests when I need to and have a nap in the afternoon. But some of that is probably being nearly 78 years old anyway.
I have some diarrhoea but that is controlled by Loperamide when I need it. Occasionally I get a lot of trapped wind, especially during the Tem days and I often feel bloated. But a very kind person on the Neuroendocrine Cancer UK Facebook page mentioned Windeze which I have tried. The tablets are available from the chemist and are brilliant for me. Have some in before you start the Cap-Tem to try just in case. For me, I only need to take them some days and probably only one or two doses.
Throughout 2023 I was still losing weight though. My consultant hoped the treatments would prevent further weight loss, but it was unlikely that I would ever get fat! I was 11st 10lbs in 2020 and am now around 8 stone. It’s cheaper than Slimming World but at 5ft 8ins tall I am looking a bit thin. After discussions with a Dietician, attached to my GP practice, I now take Ensure vitamin supplement drinks and I have fortified milk in coffee and on cornflakes. I mix 4 tablespoons of dried milk powder with a pint of whole milk. I am also prescribed lots of vitamins. My appetite has increased a little and I mostly remain stable around 8 stone 6 lbs.
In April 2023, I had an intestinal obstruction and similar symptoms in early May. I was hospitalised both times and, on a drip, and nil by mouth for a couple of days which resolved things but to prevent recurrence I have been put on a low-fibre diet indefinitely. I was given a very useful booklet from The Christie, but meals are oh so boring. Very little fruit and veg and no brown bread, rice etc. Gluten intolerance makes eating out even more difficult.
The Future
And life now? Well, I am still Secretary of my Tangent Club and Inner Wheel Club and attend most meetings. I meet my friends for lunch and coffee, and they all say how well I look.
I am still here, feeling well most of the time, and planning a cruise to Iceland soon to celebrate our 55th wedding anniversary. It would have coincided with week 4 of my Cap-Tem cycle, so my consultant has suggested that I delay my cycle by a couple of weeks, to enjoy my holiday without so much fatigue. He also offered me a ‘Fit to Fly’ letter for my insurance company. We are using the cruise line that collects us from the house and drives us to Dover and home at the end. The same company was brilliant with my dietary requirements in the summer of 2023 before the need for chemo was discovered – plan ahead to let them know. They help if they can.
I suppose my message is: If you can, hang in there folks. I am trying whatever treatment is offered. I plan to be here to see my grandchildren married, and my youngest one, Richard, is only 11 years old right now…
Thank you for reading, Terrie.
May 24.