Hello John, I have been wondering if someone from the trials or early usage would write in one of these forums, since it seemed like so few of us with the Folfox treatment have longterm PN. I appreciated hearing your history even though the PN outcome is not positive. I was afraid this might be the case. Its pretty sad that the guys running the Mosaic study didnt take your PN very seriously. I know that Sanofi (the drug-maker) is taking it seriously now since they are doing studies on counter-drugs to prevent the PN side-effects of oxaliplatin. Unfortunately, they are not doing much for those of us that have it already. I suspect the number of PN longterm suffers may be higher than they claim but you can never be sure they are giving the real statistics. I also heard they are now looking at whether 10 cycles is enough since much of the worst PN comes from the last cycles.
I wish I could suggest something to help your (and my) PN but I already wrote all the things I have tried. I am still on a combo of Rivotril (clonezapam) and Neurontin (gabapentin) which is just barely adequate to keep things tolerable. I keep thinking its just for a year or so and I'll be back to normal, but its been 1.5 yrs and its worse than ever so I am beginning to realize this may be forever. It will be hard to give up so many activities that used to be so important in my life.
Maybe something will come along that will help us eventually. Good luck to you. Hope to hear from more people just to see how they cope and if there are more like us. Regards - alan.
I am going through the 12 cycles of FOLFOX. I already (after the 2nd cycle) have neuropathy lasting more than 7 days. I'm looking for when to stop the Oxaliplatin to get the most possible from it, but avoid permanent neuropathy.
From what I've read, the non-recurrence rates for FOLFOX (78%) and 5fu/leuvocorin only (72%) don't seem like enough difference to warrant spending the rest of my life in pain or unable to use my hands.
In hindsight, would you have stopped the Oxaliplatin? at what point?
(Am I over-reacting??? I am terrified of this!)
Thank you for your help!
Hello anonymouse, yours is a very tough question. I also knew the seemingly small difference in odds between oxaliplatin and no oxaliplatin, as well as the very tiny probablility of long-term PN. What you have to consider is: are you going to be in the 6% who will die because you didnt do the oxal. treatment or the 1% who will get long-term to permanent PN? To me (a scientist), there wasnt a choice, I went with the odds. I wont ever know if the choice was right, if I would have been OK with a reduced or no oxal. treatment. What I read in the treatment protocol for Canada was that they either postpone or stop the oxal. treatment if the PN reaches stage 3 (affects everyday living in a severe way). However, there is no data on the survival rates of those that stopped early (it would be very complicated to use patients not studied in a controlled way). I heard from my oncologist that they are now doing controlled studies on reduced numbers of cycles. So perhaps soon there will be data. I think if I knew for certain that I would get severe PN and it would not go away, I would have opted to stop earlier and hope that 8 to 10 cycles would do the job. However, that was never an option and of course I never suspected that the PN would get so bad and last so long. I am sure I would be not be of this opinion if I stopped early and then had cancer reappear soon thereafter. So, I am afraid I cannot provide an answer. You should also be certain you are talking about PN (tingling or pain in the hands and feet) and not the other neuropathic symptoms associated with oxal. (tight throat, sensitivity to cold, jaw pain or stiffness) which go away fairly rapidly. In my case the PN started only after about 4 cycles and was very mild. After 8 cycles it was much more strong and continuous and began to affect my daily living. At 12 cycles it was strongly affecting my daily living but still not to the point that I need medication to tolerate it. This occurred only about 1 month after end of treatments. If already you are affected strongly and continuously, I would discuss this with your oncologist and also get an opinion from a neurologist who is familiar with PN. As there are alternative treatments that are nearly as effective that dont use oxal., it may be the right choice to drop or switch if it looks like your nervous system is especially sensitive to oxal. like mine was. Thats the best I can suggest. Good luck. -Alan.
The 6% difference is between reoccurance and not, the 5yr survival rate is the same. (NOT that I want reoccurance!) My right leg was tingly-numb for most of 2 days (3 & 4 days after Oxaliplatin). Cold sensitivity (touching objects in fridge) is still with me 7 days after (and counting).
What alternatives are there to Oxaliplatin other than 5FU/Leuvocorin? (especially that are as effective?) FOLFOX & 5FU/Leuv are all that the oncologist mentioned.
THANK YOU!!!
Hi again, the alternative drug to oxaliplatin is called irinotecan. Maybe its not considered an alternative in the US but many studies have been done worldwide. Its a little bit less effective than oxal. They had some studies where they switched from oxal to irin because of the neuropathy (an also vice versa). It was difficult for me to determine the effectiveness, not being an expert (I read the presentation given to an international oncology meeting). I assume you had stage 3 colon cancer so are not allowed to go for these new drugs (avastin and erbitux) which seem to do wonders for stage 4 cases. It seems avastin or erbitux + irinotecan is now a standard treatment for stage 4 and avoids the neuropathy problem quite well. Thats what I know. You might do a Google search on standard stage 3 colon cancer treatments. Best of luck, Alan.
Hi Lindsey42! I hope you are still doing well.. I don't get on msg. board much, but wanted to give you a quick response to your question about dizziness and increased symptoms following treatment- It happened that way w/ me also, and that is usually the case I am now reading, but didn't expect it that way at the time my treatment ended, so it was a little surprising for me... but I see your message was from December, so I hope your symptoms may be subsiding some- mine did after 2-3 months. I would get a little dizzy/wobbly if I was going down steps especially, had to be careful,sometimes I really do think I was more forgetful, would have times I'd done something simple and not remember what I'd just done.. little things like where I put stuff...that was hard to prove as that happens w/ everybody sometimes but I did seem to have more puzzling stuff like that , that surprised me, and I had to write more stuff down! BUt do be encouraged, the symptoms do subside , even if they don't go totally away... I would cut myself on knives almost everyday, drop stuff- didn't always grip completely etc... but the worst is the first few months after treatment... let me know how you're doing! I'm 2 yrs. away from my diagnosis- stage 3.. and seem to still be cancer free... hope you're well!
Hi John- glad to see your message, very informative, thanks on behalf of us all for posting it! I do wonder what stage your colon cancer was? thanks for sharing& be well!
HI again Lindsey- love your name by the way... the loss of balance issue is called proprioception- it deals w/ your body being aboe to move in space w/out you looking... it's just another one of our senses.. just in case you like knowing these things! My proprio.is much better! bye again
Hi ! You have a good and understandable question! I guess one question may also have to do w/ what stage yours is...I stopped my Ox. part of FOLFOX after 10 Ox's due to continuing instead of acute neuropathy, though I did notice it after the 9th treatment... yours seems to be early, so it really may differ w/ each person.. just thot I'd share about mine... but even tho my neuropathy is still there after 18 months post- chemo, mine is not that uncomfortable... so you really have to judge for yourself and don't worry about it.. I didn't when I stopped- my onc. made the decision and even tho I thot initially I should do all 12, I really felt at peace stopping and didn't worry about that another second..was glad he made decision for me... so whatever decision you make, it's the best one you can make.. go w/ your gut and don't worry- it's really somewhat of a guessing game for all involved, no clear answers, so you can't expect yourself be sure... just pray about it and let it go..! let us know how you are!
when my onc. stopped my ox. after 10 cycles, we just finished w/ the 5Fu but stepped up pace to weekly... seemed reasonable to me!