The Colon Club

Hello everyone, newcomer to this forum. Unfortunately not new to colon cancer been dealing with it since Aug 2012. Had it in control with 5FU and Vectibix but it starting
to stick it little head again so doctor wants to change it to Irinotecan and Cyramza. Hearing all the side effect of Irinotecan I don't know if I want to take it. Also going to talk to some doctors about immunotherapy clinical trials Oct 9. Any advice on any of this will be truly appreciated.

I had stage 3a in Aug 2012. Had surgery removed 8 inches no other issues. Fight it off initially with alternative method, diet, supplements and then some. Was good until the end of 2014 when I thought i was cancer free and slowly stop my diets and supplement. Well it head showed up at beginning of 2015. Went to Mexico for alternative therapy but it didn't work...so been on the initial chemotherapy with oxa...can't spell it 5FU and vectibix. Had to stop oxa about 6 months ago because neuropathy started to come in. Was stable with the 5FU and vectibix. Last scan showed a 2.5 cm in the liver that was not there last time. The problem was for the last 2 months I've been dealing with women issues where I was bleeding too death. In fact tomorrow is getting an ablation to try to stop it. Not only was my immune system down but they put me on progesterone cancer promoting hormone to control my bleeding. Try to plead with my ONC to keep the same therapy until I fix my problem first. He won't do it.

Have anyone reject the suggested therapy and insist on doing the same therapy? Can the ONC keep the same therapy? I know they have a protocol they have to follow. Have anyone fought against it because I'm about to do it.

Hoping to get a lot of input...have to make decision by next week already had to skip one treatment because he will not give it to me.

I don't have experience with rejecting oncologists suggested treatment, but I can share with you that irinotecan as part of my folfiri cocktail has been helping keep me stable for over a year and the side effects for me have been tolerable. I'm still able to work part time in a desk job that requires a lot of reading, writing and mental work. I'm only in bed sleeping for about three to four days every two weeks and that's when I'm on the iv chemo. I've lost some hair but I'm feeling ok. Why not give it a try and see how you tolerate it before trying something else?

Unfortunately I'm the bread winner in my family and can't afford to work part time. However I am blessed with a job that I can work from home for a little bit. However I feel like I'm taking advantage of my work when I do that. Please share your experience with irinotecan? Do you really have bad diarrhea? How does everyone handle working with that side effect? Also looks like the cyramza can cause diarrhea too, double dose.

I will give you my mother's experience with Irinotecan (she has only had one infusion so far), but I wanted to let you know that she didn't handle the FOLFOX well, so she is very susceptible to symptoms and I know her reactions are not always the normal. She has an ostomy bag, but she had an extremely high output of pure liquid for days. She was in the hospital at the time and they were able to control it but it took maybe 3 days to get everything back in order. They were literally emptying her bag every 20 mins and at times it kind of exploded a couple of times because it' kept filling so fast. She had extreme vomiting for 2 days after the infusion. She was extremely weak and unable to walk (but again she was weak and collapsing after the FOLFOX infusions). Her Hgb dropped so low she needed a blood transfusion. Her Onc has postponed her treatment 4 weeks to get her back on her feet before infusion 2. She is set to do another round of Irinotecan this coming Tuesday, and hopefully she is stronger and tolerates it better.

Again I think my mom is the exception not the norm, but wanted to give you an honest answer regarding somebody who did have a lot of symptoms.

Thanks for sharing and praying that your mom will take the next treatment better. I've been blessed that I haven't had any bad side effects with all my treatment so that is why I am so scare to change anything. Anyone convinced their ONC to stay with the same treatment at least until the next scan? Feeling very blessed with these input.

Irinotecan is not giving me any diarrhea trouble, and very little tingles in my hands, usually it's with warm or hot water that I may feel a bit of tingles. Mostly it's sleepiness for me.
My vision has also gotten worse, but I've been on it for a year now. I didn't notice change in vision right away or anything drastic like that.

I was also the breadwinner amd still am, but I was forced to go down to part time because treatment takes up so much of my time. We are managing, but of course I'd rather be fulltime.

Everyone's reaction to a chemotherapy drug is different. I have a genetic mutation that allows me to tolerate a higher dose of irinotecan than normal. I have been getting that higher dose as part of FOLFIRI and have experienced only minimal side effects. I do not experience any diarrhea, nor palmar-plantar (hand-foot) syndrome. I have lost hair and experience some fatigue and some nausea, which is easily controlled.

The only way for you to know how you will affected is to try it.

Hi,

My mom now started Irinotecan (folfiri) + Cyramza. Please see signature for history. She progressed unfortunately on Folfox + Avastin, Folfiri + Avastin and now they switched her to Folfiri + Cyramza. She is being scanned every 2 months (MRIs and CT with contrasts). Her decease is currently limited to liver, but inoperable and treatments like ablation and cyberknife are not possible due to a number of small mets (over 10) and underlying autoimmune decease.

Everyone is very different in terms of chemo side effects. She has never developed neuropathy and had 8 treatments with Folfox/oxi and then 4 without oxi. After 9 cycles of Iri she has finally had to shave her head, since her hair felt off in patches. For some reason this one was a truly difficult one for her psychologically (losing her hair). She never had diarrhea. She suffers from constipation, but daily enemas help plus various laxatives and eating lots of plumps.

Cyramza is more advanced medication than Avastin. It was approved in combination with Folfiri in 2015 I think. We have hopes and our onc participated in initial clinical trials with it before it was approved.

I was asking earlier about Cyramza on this forum, but it seems that there are very few who have any experience with it.

Best wishes.