Hi, new to the group.

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Hi, I was diagnosed in September 2021 with bowel cancer, and had surgery in November 2021 to remove an adenocarcinoma. 11/33 lymph nodes positive so I am part way through a course of adjuvant chemotherapy (3/12 cycles). I awoke from 7.5 hours of surgery in ICU to discover I had an ileostomy, which was not part of the original plan! Though I had been warned it might be a slight possibility. Was in hospital for a week (the first in-patient stay in my life) and overall I had a good experience, Covid restrictions not withstanding. Recovery has gone really well and apart from a bit of a challenge with the stoma pouches over Christmas I am coping well and have adjusted to my 'temporary' stoma. I am lucky in that I have always had a positive/fatalistic attitude to life and am quite resilient. That is not to say I can't have the occasional wobble or worry.

I started 'mop up' chemo (FOLFOX) on 13 January and start the third of twelve cycles tomorrow. So far so good. I'm experiencing some side-effects but they are manageable/bearable. I do have a question though. Do the side-effects from FOLFOX continue to wear off between cycles or do they build up cumulatively? So far the cold sensitivity lasts for about four days from the start of treatment but has gone by day 5 or 6.

Macc over 3 years ago

Im on round 7 of 12 Folfox and yes unfortunately the side effects do build up.My symptoms are cold intolerance with fingers and face when outside,lots of burping and horrible taste in mouth .I’m coping pretty well with it and by the middle of the second week I’m back to normal.Unfortunately the taste issue puts me off drinking coffee and tea and most disturbingly chilled white wine which tastes horrible.
Have fun!!

Spider56 over 3 years ago in reply to Macc

Thanks for the reply Macc, although perhaps not what I wanted to hear. My metallic taste wears off currently after about 4 days. After about 7 days I have been able to enjoy a Guinness or two. In fact I'm going for a couple tonight as a treat before tomorrow's ordeal. Cheers!

juls over 3 years ago in reply to Spider56

Hello , I have had 1 week intensive radiotherapy and on Monday start the first 9 cycles of folofox and 5fu, so 18 weeks of chemotherapy. interesting to hear your side effects can't say I am looking forward to it but I am very positive. Hopefully after all that my tumour should have shrunk !!!! Then surgery can't wait to get it out xx

Macc over 3 years ago in reply to Spider56

Never thought of trying a guinness.Sounds good.

Spider56 over 3 years ago in reply to juls

Hi juls, As others have said on here, chemo affects everyone differently, so I can only speak for my own experience, and I have only completed two cycles. My hair has started thinning, not that I had much to begin with, which is not a problem. I currently experience cold sensitivity to my face and throat for about 3 to 4 days, though I have not had a throat spasm. My hands have so far not been affected. The roof of my mouth is a little sore, but is not affecting me eating or drinking. I have felt nauseous for about 4 days each cycle, but have not been sick. I have taken the odd domperidone tablet. My appetite has not been affected at all and I have had a number of meals in restaurants/pubs with no problems. I have got a slight tingling/numbness in my feet and have mentioned this to the oncology team. The steroids I take for 4 days each cycle do make it difficult to get to sleep but they are supposed to counteract the fatigue. I am able to go for 2 mile plus walks most days.

Overall everything is very manageable for me so far. That may change as the treatment progresses but it is something I feel I have to get through. I too am very positive and have a very supportive group of close friends, who I will be meeting tonight for a couple of pints of Guinness.

All the best with your treatment. I had the op and ileostomy before chemo so different to your experience.

Spider56 over 3 years ago in reply to Macc

Definitely recommended!!

juls over 3 years ago in reply to Spider56

Hello, They say your taste changes maybe I will try a Guinness, usually a wine drinker. Thanks for the advise I am sure I will find out my side effects next week.

Hope all goes well with your treatment. Stay positive , I am a great believer in that and stay safe.

Spider56 over 3 years ago in reply to juls

Quick update. Cycle 3 started yesterday and the cold sensitivity has really kicked for the fist time. Tingling in the fingers when touching anything cold, even door handles and the kitchen worktop. Went to the season opener for my Rugby League team last night and even with thermal gloves on and a snood and scarf may fingers and face were tingling throughout the game. It was a challenge but the result made it worthwhile. The tingling is still with my fingers as I type this. It seems in my case the side-effects do build up.

juls over 3 years ago in reply to Spider56

Hello ,had my first chemo session on Monday, had the tingling sensation but not too bad. I am sure like yours it will get worse each time. I struggled drinking warm water but am now ok with it cooler. Very tired but apart from that not too bad. District nurse did say symptoms for other things can kick in day 7 - 10 we will see.

I have 9 cycles in all, so 1 down 8 to go!!

Hope all your symptoms have calmed down after the Rugby match.

Spider56 over 3 years ago in reply to juls

Hello juls, Glad to hear your treatment is underway, and that the cold sensitivity is not too bad. I've just been putting some shopping away in the freezer compartment, without gloves and was ok, but when out walking yesterday had tingling on my face and hands. So far for me the fatigue/tiredness is worst in days 5-8 of the cycle then I gradually get more energy. I might give my daily walk a miss today with what is predicted from Eunice and double up tomorrow. Stay positive, and take one day at a time.