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Chemo break??

cahalstead
Posts: 119
Joined: Jan 2007

Hi to all,

I had an appointment today w/my onc. I'm having real problems with my legs, I'm on 5fu and oxaliplatin. My legs are very weak and I'm having to be very careful not to trip or lose my balance. This week I was to get my 6th cycle but my onc is concerned about my legs. He and I decided that I would hold off 2 cycles of the oxy to give my legs a chance to rejuvenate themselves, probably won't help a whole lot but I have to try something. He said when I start again he may just do 1/2 strength. He did say there are no studies as to how many cycles are needed, he just has the study done several yrs ago as to the strength and number of cycles. He did say, at some point, they probably will find that 12 cycles are not really needed to do their thing. I asked him if many of his patients have had to cut back on the strength and he said "YES", maybe ten percent have to cut back.

Yes, I'm working and he and I both say working is good for me, since I enjoy it. I told him the first thing most people say to is, "why don't you give up working?" He said to tell them my dr. said it was good for me and okay to do it!

Anyway, anyone else have to but back like this due too leg problems? I'm disappointed but I think it will be okay. I have to admit I am looking forward to the oxy break.

Thanks for your thoughts!

Char

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Char,
Sorry to hear you are having so much trouble with your legs. I think stopping the oxiplatin is the way to go for now. I will complete my 8 of 8 cycle next week (yeah!!!!). I have had some numbness and tingling the whole way through (not too bad though). I have also had some balance problems as well. I think that is part of the reason I tripped and fractured my right foot Memorial Day weekend. Anyway, due to an incision that won't heal and my fracture my oncologist pulled me off Avastin for my last 2 cycles. I was freaking out about it, but he said he has really thrown the book at me due to my age. He assured me that everything will be ok. Anyway I can understand your frustration and the relief of a break. I will keep you in my prayers that things will get better.

Kiersten

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Hello Char

I am on my fifth cycle of 5FU/Oxaliplatin. I don't have the same leg problems as you but I did have my dose of both drugs reduced by 20% on the last cycle (primarily due to mouth sores and diarrhoea). My oncologist told me he starts everyone at the highest possible dose and often reduces it. He assured me that it wouldn't make the treatment any less effective (didn't quite follow his argument here - it was something to do with the levels of certain enzymes the body needs to process the drugs).

He is now doing nine cycles (instead of 12) as standard protocol. He told me that no one really knows how many cycles are needed: they are about to start a clinical trial doing only six, and he feels nine would be a good compromise. Apparently 15% of patients who have completed 12 cycles suffer from long term neurotoxicity.

All the best, Catherine

kmygil
Posts: 881
Joined: Feb 2007

Hi Char,

I hear you! Going to work when I could saved my sanity! Toward the end I couldn't go to work due to side effects, but staying home made me crazy. I had to postpone treatment twice due to numbness/tingling, and after my 5th cycle the dose was reduced due to side effects.

I don't know what sort of leg pain you are experiencing. Apart from the numbness/tingling, I experienced what seemed to be deep bone pain after my 8th cycle, and it took some major painkillers to deal with it. It continued for 3 months after my last treatment (#9 of 12--had to stop), and I still periodically get an afternoon or night of pain. The numbness/tingling seems to have settled in for the duration (my fault, but that's another story), but Neurontin keeps it at manageable levels. It is the numbness/tingling that makes me lose my balance, because you can't really sense or intuit what your feet are doing. The leg pain caused a lot of weakness which made me fall, but that got a lot better over time.

I understand that after a big conference, a lot of oncologists are cutting the protocol to 9 or 10 treatments instead of 12--there doesn't seem to be a lot of additional benefit to the extra 2 or 3 cycles.

Hope this helps you out. You will kick this beast's butt!

Kirsten

jams67's picture
jams67
Posts: 927
Joined: May 2006

Everyones reacts a little differently. It could be that 5 cycles are enough to do the job.
I had only 5 because the neuropathy in my hands and feet began to get worse. It is not unusual to finish before you reach #6. Congratulations on getting finished with so many!
Jo Ann

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