Capaceptamine Side Effects wondering if worth it.....

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Hello Everyone, Really hope everyone is coping in whatever situation you find yourself!

A brief re-cap for me is I had a large tumour removed from Sigmoid Colon end November. Results of biopsies were T3 N0 M0 had 27 nodes removed, so all very positive til the 'but' when told peripheral blood capillaries round area of tumour had shown changes, and because of that they strongly recommended 8 cycles of chemo pills six twice a day for two weeks then a week off, then repeat etc. I had decided prior to the meeting with the consultant that uless biopsies showed cancer I would not have mop up chemo. But when we met was given the impression it was very important I take that choice.

I also have Rheumatoid Arthritis and very poor mobility, but I cope well with this after 32 years, and this is my third cancer in 10 years so I am used to treatments etc.. but this time I am finding very hard. In week two of first cycle diarrhoea became much worse, and nausea, plus my hands and feet dramatically worsened (even typing here is painful) I already have peripheral nerve damage due to RA my eyes have also been very sore and watery. My first week off things did improve, but then we start again. The last four days things have been even worse, exploding pouches at night, nausea controlled by dopermide but hardly eating so goodness knows where the contents of bag are coming from! I feel quite weak and very thirsty for first part of day then perk up around 4pm before all goes downhill again from 7pm.

Seeing that some folk have less cycles than myself I am concernd that my risk is far greater than they let me believe. I will be speaking to nurse Monday morning. Just would love to hear from anyone on same medication, what side effects how thy coping etc... August feels miles away, and I hate spending a lot of my days focussing on cancer, as cant get away with it! I should also add that I am under uroloogy for investigation as have no bladder sensation = incontinence since surgery, which a bit soul destroying being a tena pull up lady... my two year old grandson sae my pack of them and said 'pull ups nanny!' funny, but at least he is nearly toilet trained - I feel I am regressing!

Thanks for listening folks. xx

Gemmary over 3 years ago

Hi LizzieJo, my diagnosis was the same, with 40 nodes checked but V1 found, the vascular invasion. My chemo was 5FU and its sidekick by infusion every week for 30 weeks, so cannot comment on the tablets. However they did reduce the dose twice, which may be an option for you maybe? Perhaps speak to the oncologist or the nurse. Just remember that even if you have to give up, you gave it your best shot. Best wishes, xx

LizzieJo over 3 years ago in reply to Gemmary

Thanks so much for your reply, Gemmary, Hope you are doing well? Yes I will discuss with nurse on Monday. Thank you again xx

StarryGirl over 3 years ago

Hi LizzieJo,

My mum had similar pathology report results post surgery see my profile. She has an ileostomy bag. She was told she has vein invasion V1. This is considered an intermediate risk and so she is having 5FU and LV via a wearable pump for six months (12 cycles). She wears it for 46 hours every 2 weeks. This is similar to your tablets but goes straight into the blood stream via a port inserted near her collar bone. We chose this method as it bypasses the tummy.

Nonetheless she does lose her appetite and gets tummy wind/cramps on some days. She also gets fatigue and falls asleep unexpectedly. She just feels meuhhhh. We have found some things help to settle the tummy. She eats good quality sugar free ginger biscuits (she is diabetic]. I found her some digestive teabags which are a mixture of ginger (lemongrass), peppermint and chamomile. She has never drunk herbal tea in her life and is pretty unsophisticated in her food tastes but she gave them a try. They have been a game changer. One of the ingredients is chamomile which calms the stomach tension and enables her to sleep. Also I did some research on chamomile just to ensure it won’t negatively affect chemo and it seems there is some complicated evidence to suggest it could help cancer cell death. So no harm at all.

She has begun eating probiotic yoghurt each day to restore any stomach bacteria that has been reduced by chemo. We have bought some Kefir yoghurt from Yeo valley as fermented foods containing live bacteria are also showing promise at fighting colon cancer recurrence. Just a spoonful or two to begin with (can cause loose stools initially) and not in close proximity to hot foods.

The hospital nurse suggested the Fortified desserts from Nutricia called Forticreme. They are for people who have a poor appetite or need building up. Her GP has prescribed them now. She eats half a pot twice a day, as she has to ensure she doesn’t eat too much folic acid which is one of the vitamins in the formula. She also eats tinned semolina and rice pudding which seems to help.

Overall, it appears that vein invasion is a factor that needs adjuvant chemo to help reduce risk of recurrence, so we are persevering.

Marianne26 over 3 years ago

I was recommended 8 cycles of Capecitabine Tabs in April '20 Starting with 1500mg. 3 times daily. This was to shrink 2 small lung mets. following bowel cancer in May '19. I tolerated them very well & the dose was increased to 1700mg. By cycle 5 - I was experiencing bad Palmar Plantar in my hands & a bit in my feet. I saw my Oncologist - & she immediately stopped this chemo. treatment.

The 5 cycles reduced my lung mets & I was able to have a lung ablation to blast them. Fortunately, I have been clear since then.

If you are having such bad side effects, they will reduce the dosage...It's good to keep a diary of your daily symptoms & present to your colorectal team. In my case, it wasn't necessary to complete 8 cycles - 5 were adequate at that time.

Best wishes

Marianne