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Bowel cancer treatment and side effects

Dellboy

Experiences of chemotherapy please?

Hello I wondered if anyone could share their experience of chemotherapy? I have colon cancer that has spread to the liver and lungs and my life expectancy is 6 months without treatment . I have been told the chemo could prolong my life to maybe 18 months . I know everyone's experience is different but would like to hear others stories about the treatment be them good or bad ? Thank you

Bear G

Hi @Dellboy
Sorry to hear of your prognosis but please bear in mind that it's an educated guess and that there are many of us here that are Beating the odds. I don't want to give false hope, but would encourage you to look beyond those timescales while making the most of your time.
If you click on my name you'll see my story, I was originally given up to a year but here I am targeting 5 years and beyond!
You're right to say that all our Chemo experiences are different, they really are. I can say that the 'heavy' Chemo I was in initially (folfiri plus avastin) was very effective for me and wasn't too rough a ride. Since then ice been on mainetenance Chemo of capcitabine plus avastin for over three years and that's helped to keep things in check whilst being fairly easy to tolerate.
Throughout all this I've worked and traveled, chemo hasn't held me back at all, rather it's allowed me to have some grr adventures.
Did your oncologist say which treat you'd be on? That way we'd be able to give you more specific advice.
Big hugs
Bear
:x::x:

kdan

@Bear G that's some story included in your Bio. I hope it gives @Dellboy some encouragement. All the best with your treatment.

@Dellboy if you could share your treatment plan you probably will get some great advice. Personally I've done 8 rounds of FOLFOX. I'm due to have 12. It basically involves being in a day ward chair for half a day to a full day getting IV infusions for the different drugs. Then, for me, I'm on an 5FU pump which connects to a port in my chest. go home with that connected to me for 2 days and return on the Friday for disconnect.

This repeats itself every 2 weeks. So 12 sessions = 6 months. The symptoms differ for everyone. For me it is a general miserable feeling for a few days and then I perk up from say day6/7 onward. Never feel 100% and will have some lingering side effects (mouth sores, nose sores, some bowel complaints, tiredness etc.). Overall though it has been better than I anticipated. I feared the worst. Eating well, sleeping well, moderate exercise - all help a lot in my opinion. See a psychologist or therapist if you think it would help.

All the best and just try to think as positive as possible. Easier said than done, I know! Good luck

Dellboy

Thankyou so much for your reply I have been told of two drugs first and then maybe a third added in if it works on the biopsy! They are FOLFIRI, Cetuximab through a picc line . I can't remember the third possible one right now. I am due to start treatment in three weeks and I am pretty sure I am going to give it a go as I don't have a lot to lose . Thanks again Bear it is nice to hear something positive
Regards Dellboy :x:

kim74

Hi@Dellboy I have bowel cancer with spread to the lungs, I had a third of my right lung removed a year ago and have had 12 cycles of Folfox had a reduction of oxy 15 percent after the first cycle but managed the rest. It's not easy at times but you will get through it. Sickness was bad, had Emend which really helped, steroids made my face swell got very red and got quite depressed, once I was off them I was ok. Everyone is so different. I am now waiting to have RFA on my left lung, then more chemotherapy. Not sure how long I have, but I will keep going and see where it takes me.
Best wishes
Kim :x::x:

Dellboy

Also thank you @kdan for another uplifting honest reply . I did forget to mention I have also had to have a colostomy bag . Four weeks ago I had to have an emergency operation as the tumour was blocking my bowel . I have recovered well from this considering . I am a young 76 years old and at this moment I am still able to have my daily walk and although tired am not too bad . If anyone has also had chemo with a stoma and has any info regarding this ? I would much appreciate it !
Regards and all the best
Dellboy

Bear G

Hi @Dellboy
That's very similar to my regimen.
Folfiri is actually a combination of chemo agents - irinotecan, 5FU and folinic acid. Most of them will be given to you on the chemo unit, your 5FU will be given to you in what's called a 'pump' but is actually a bottle with a bubble of drug in it, you'll carry that around for 2 days before going back in for it to be disconnected.
It's actually a long day in the unit so take things in to read and, if you have one, download some films onto an iPad.
When I was on this regimen I managed to work, travelled to the continent several times and even visited friends in the US!
Try to view this as YOUR chemo, it's your friend that's there to help you. Be aware that while you may have some side effects, your chemo will be quietly doing lots of good things for you.
Big hugs
Bear
:x::x:

Simba 1998

Hi @Delboy hubby diagnosed last august with mets to liver and lung . Started on 12 rounds of folfox which did some shrinkage . He's just had five rounds of folfiri and cetuximab and had outstanding results and is now booked in for a liver resection start of July . What is sometimes inoperable before chemo can become operable . He has remained fit and well . We have also travelled extensively in between chemo rounds . He has had fatigue and a rash but we have worked round his good days . He has ate healthy and done gentle exercise on his not so tired days but pretty much walked the dog every day . Good Iuck with the start of your chemo :x:

Liriodendron345

Hi @Dellboy, I have been on FOLFIRI and Cetuximab for around 17 months, and have had very good results. Other folks have described some of the possible side effects but I wanted to answer your question about chemo and a stoma. I do have diarrhoea for a few days each cycle and have to take quite high doses of Loperamide and other drugs to keep it under some kind of control. However in some ways having a stoma can make it almost easier to deal with although the bag can fill up alarmingly quickly! It is normal to experience some slight bleeding from the outside of the stoma and sometimes temporary shrinkage. I have only had one disaster (luckily at home), but my stoma nurse sorted me out quickly with an order of different, convex bags and extra adhesive rings to be used when necessary. As @Bear G says, it is good to view the chemo as a friend, and in my case at least, the same can be said for my stoma! Take very good care, Kim :x:

Delboy

Hi @Simba 1998 - wrong Delboy ! I think you meant @Dellboy 😀😀

Quote from @Simba 1998:
Hi @Delboy hubby diagnosed last august with mets to liver and lung . Started on 12 rounds of folfox which did some shrinkage . He's just had five rounds of folfiri and cetuximab and had outstanding results and is now booked in for a liver resection start of July . What is sometimes inoperable before chemo can become operable . He has remained fit and well . We have also travelled extensively in between chemo rounds . He has had fatigue and a rash but we have worked round his good days . He has ate healthy and done gentle exercise on his not so tired days but pretty much walked the dog every day . Good Iuck with the start of your chemo

Dellboy

Thankyou for your reply really helpful! I am starting the chemo in two weeks . I had exactly as you said with my stoma this week - bleeding and sore but nurse said as you did it had shrunk and I needed smaller bags! Regards thankyou for taking the time to reply and good luck with your journey! Dellboy !

Quote from @Liriodendron345:
Hi @Dellboy, I have been on FOLFIRI and Cetuximab for around 17 months, and have had very good results. Other folks have described some of the possible side effects but I wanted to answer your question about chemo and a stoma. I do have diarrhoea for a few days each cycle and have to take quite high doses of Loperamide and other drugs to keep it under some kind of control. However in some ways having a stoma can make it almost easier to deal with although the bag can fill up alarmingly quickly! It is normal to experience some slight bleeding from the outside of the stoma and sometimes temporary shrinkage. I have only had one disaster (luckily at home), but my stoma nurse sorted me out quickly with an order of different, convex bags and extra adhesive rings to be used when necessary. As @Bear G says, it is good to view the chemo as a friend, and in my case at least, the same can be said for my stoma! Take very good care, Kim

Regalo

Hi Dellboy...as everyone has said, we all seem to cope with chemo differently. I can honestly say that the side effects have not been too horrendous. I am not pretending there aren't any but for me I am coping mostly. I have to be careful as I tend towards constipation which can be a problem...I ended up with a horrendous anal fissure which required surgery but that has been the only blip really. Be prepared for fatigue and also be prepared to give in to it. I have found that a weekly acupuncture session lessons the side effects quite considerably and they seem milder now. Good luck and there will,always be amazing support and advice on this forum. :x::x::x: