Just started chemotherapy and radiotherapy day 5 capecitabine and have to have APER surgery just wondering what to expect 28days radiotherapy and 35 capecitabine
I had 25days of radiotherapy with 35 days of capecitabine before my treatment. I presume you are wondering about the effects of this part of the treatment. It must vary with each person but I had very little. I was more tired, I rarely had an upset stomach ( they gave me loperamide in case anyway), redness on the hands and feet, but manageable and that was about it. The main effect I had was the five day a week for five weeks commuting up to Guys for the treatment! Also the number of pills to take each day.
But, the big BUT, the radiotherapy with the pills shrunk my tumour to the point that the surgeon almost decided not to operate so very effective.
Interesting machines aren't they.
Good luck with the treatment I hope it works as well for you as it did for me.
Hi John I have just read your profile and I love that you called your mate Piglet it really made me smile. My mate is called Bubble and Squeak (Bubble for short). She was named after my daughter's guinea pigs. Like the guinea pigs she seems to pooh indiscriminately, she blows up like a bubble and occasionally when she releases wind she squeaks, like the guinea pigs. She had her first birthday on 2 January and I'm seriously hoping she doesn't make her second birthday. Should have been reversed last year but like you I was caught out by Covid. Hopefully now that things are slowly improving I'm keeping my fingers crossed that it will happen soon.
Hope your recovery continues and you remain well. Stay safe.
Thank you John not had side effects yet but only on day 6 im just worried about surgery it sounds so life changing did you have surgery in the end thanks helen
Hi Helen, Yes I did have the surgery. After the radiotherapy there will probably be a few weeks wait as the radiation carries on working after your last session. So after a wait and then a CT scan etc I had the surgery nearly three months later. (If you have the same wait then at least the hospitals will have less Covid around I hope).
I can't speak about the type of surgery you are going to have, is it definitely APER? I had a Lower Anterior Resection with a temporary ileostomy, now reversed. Have they told you exactly what that means and if you will end up with a stoma?
Yes thay told me I would have a permanent stona and would have to have my anus removed seems so radical
Really sorry to hear that, Helen, I am not surprised that you are concerned. The operation sounds daunting, taking something away like that but, in my case, after my operation I wasn't using my anus for a year, so it might as well have not been there! After getting used to the ileostomy bag life went on as normal. I have a friend who has had a colonostomy bag, which I presume is what you will have, for more than twenty years without any concerns.
There is a lot of positive information out there about living with a Stoma and it will let you live a suprisingly normal life. It is difficult to stay positive sometimes but try. I hope it all goea swell for you.
Hi Helen I had a tumour similar to yours and am now 20 months on from diagnosis with a permanent stoma. I had a big op called an ELAPE in December 2019 to remove the tumour . It was daunting but I can honestly say I didn't have much pain and the recovery was relatively smooth- just time consuming. I got the all clear in October and am now feeling fine and enjoying life again. The op does sound radical but I am so pleased I went with the plan as it has worked out well for me so far. Wishing you all the best with everything Sean
Thank you Sean im just struggling to get me head round having to have a stona permanent its going to be life changing but I'm positive
Hello Bop, I had chemo radiation 25 days, 10 chemo tablets a day. They were going for curitive. I had my mri scan on December 8th, said good response but wanted to give me another scan in January this year, went on the 13th and got told I had a complete response. I felt tired, I felt nausea but I caused myself so much anxiety that I don’t know if it was the treatment or anxiety. Nothing was painful, it’s just going to the hospital everyday. A lot of waiting for mri, I wish you luck, good luck with your treatment.
Thank you it gives me hope I've been struggling with diagnosis so pleased with your outcome thank you helen
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