Alternatives to Chemo or did anyone not go through w/chemo?

[christy217]

I have just finished my 2nd cycle, in a series of 12, biweekly 50 hours of 5FU, Leucovorin and Oxaliplatin, not even 24 hours into the second cycle, I began having a very red face, felt like a 104 degree temp, but my body was 96.3, my fingers and toes would constrict in place, I couldn't grip stuff, severe nausea and abdomen cramping, my tongue swelled up and so did my neck and face, I had red pinpoint spots all over my legs and arms, I had terrible joint pain, my heart rate was up, etc.,

I am stage IIA, out of 16 lymph nodes they all came back clear, but it did eat through the 4th wall of the colon which made me stage IIA. My cancer is genetic, I have HNPCC, I also have had a total colectomy regarding surgery, I have no large intestine anymore.

I have decided through this last ordeal that chemo isn't for me. I feel that I am doing more harm to my body than good. I feel terrible for 5-7 days after chemo where even going to the bathroom requires too much energy.

They can't tell me that it will help me, if it does, it's only a 2-3% chance and it will put me in menopause-I am 29 btw.

Have any of you decided this was not for you and decided not to do chemo? Or had such a terrible experience with the regimen I described that you got put on something different?

My main battle, is the internal conflict, of if it comes back am I going to be satisified knowing I tried everything? It took me a while to get here, but I feel the answer is yes for me. My polyp was only 3.2 cm, but I had my whole colon removed as a means of prevention for reoccurance. I am going to change my diet and exercise more too.

TIA for any responses.

[Cats]

Christy -

I have also seen your posts on another board. Here is what I am wondering...(been thinking a lot about your situation today!)... could you try either a decreased dose or Xeloda? I too had severe side effects w/folfox and my onc stopped me because I was having swelling in my brain that put me close to a stroke or heart attack. Even though I wanted SO badly to stop, I cried when the decision to stop was made for me. My onc decided we could try Xeloda but at the first sign of trouble he would stop me. I have tolerated the Xeloda SOOOO much better. It might be worth talkign to your onc about it. BUT, if that is the end and you need to stop then I will tell you what my onc told me...You MUST feel good in knowing that we did ALL your body would let us do... He also validated me by saying that these side effects were REAL and my body was giving me signs that we COULD NOT ignore. We even added two extra cycles of Xeloda for "insurance" since I tolerate it so well.

Wishing you the best. Hope this helps. .

I am hoping and praying that you can come to peace -physically and spiritually soon. It is soooooo hard and you have been through ssooooo much.

Take care,
Cats

[christy217]

Cats,

I am going to ask him that today. I did research Xeloda and apparently it is more for Stage III patients, but I am willing to give it a try. Thanks for the recommendation.

BTW, I like this board better, because you can exchange email addresses, blogs, etc., over there they dont want you doing much of anything. I am glad to see you're a user on this board.

Thanks Cat

[ASTEPHENS33]

As I understand it, Xeloda has been tested to be as effective as 5FU, but the trials on how Xeloda works with other chemo drugs has not completed trials, so there could be interaction issues.

[Tiphanie]

Hi. I was diagnosed with stage 2 just over a year and a half ago. I also have the HNPCC gene. My tumor was quite large, and also had gone trough the wall of the colon. Lymphnodes were all negative. I went on Xeloda and didnt tolerate it at all. I stopped after just 7 days and ended up in isolation for a couple of weeks. I then tried a milder form of 5-FU and leucovorin. I didnt tolerate that at all either. much the same side effects as you mentioned. I also felt I was doing more harm than good in my body. I stopped treatment and have been totally fine ever since. I felt at peace about my decision, but I know it is a hard decision to make. I put it in Gods hands and thats when He gave me peace about it. I will pray for you, and I wish you all the best!