The Colon Club

I feel like I got steered in the wrong direction when it came to neuropathy.... I was told we were watching for "numbness that did not go away"--- HOWEVER, that is not exactly how things have played out of me.

Chemo #1-#9: Cold sensitivity started immediately... like right in the infusion chair. I needed to heat up all drinks (room temp was too cold) for about a week after infusion & wear gloves when handling anything chilled or cool. Then all this seemed progressively fade the second week & by the time I was back in the infusion chair I was symptom-free. So I THOUGHT I was lucky & neuropathy was not going to get a permanent hold on me.

THEN I was off chemo for a while gearing up & having the big Cytoreductive/HiPEC surgery. At appx the 6weeks mark after my last chemo w/Oxalliplatin, my fingers started to tingle & go numb... then my toes... and now at about the 9week postmark, add both feet. It seems to be building??? Not sure if I've hit full extent??

NOW FOR INPUT REQUEST... My oncologist is leaving continuing Oxi up to me. I just did Chemo#10 at 50%. Any thoughts about what to do for #11 and #12?

Thanks!!

This is a tough one. I read somewhere that the side effects of chemo can "peak" several weeks after the treatment ended, and can be even worse than during the actual treatment. In our case, my husband did 6 oxi infusions and now has really bad OIPN in his feet (his hands recovered fully). That's about 14 months after the last infusion. Had we known it would be so bad, he may have requested a lower dose towards the end - especially in hindsight when we know that the treatment did not work at all! I assume that oxaliplatin has been successful for you? If you were to discontinue oxi infusions, would you be able to pursue a different chemo, such as Folfiri?

My husband did 10 hits of full folfox while the last 2 treatments were without the oxiplatium. He also started with cold sensitivity immediately and that persisted the whole way thru without out resolving till several months after treatments ended. He started with numbness on his finger tips which progressively got worse with each treatment. He was to the point where he couldn't button shirts or really do anything with his hands. He started with numbness and pain on the bottom of his feet about half way thru treatments . He is now years out of chemo and all that remains is some numbness on his feet which really doesn't bother him to much. It took about a full year after treatments to get to that point and it has remained the same since. His symptoms all peaked around treatment # 10, so the last two were without the OX. The symptoms did not continue to get worse after treatments , they just slowly started resolving within weeks after finishing everything, but like I said took about a full year to get where he remains now. Everybody's body is quite different in how it responds to and handles side effects. It's really hard to make decisions and I know what your going thru trying to make that correct decision.

Hope that helps some,

Deb

Dr Kemeny cut me off Oxi after 8 rounds, and that was when I was just starting to feel like the neuropathy took almost the whole cycle to resolve - in other words, I didn’t think it was that bad and nothing seemed like it was permanent.

She could not be convinced to restart it again, even when my scans showed that nothing was shrinking. She kept me on Folfox without the Oxi and Vectibix and told me she thought that was sufficient. The addition of Oxi would only help a very small amount and could have permanent implications so she didn’t want to risk it.

I did ultimately get to surgery to resect my liver, and my pathology was 99% dead, so I guess she was right in my case.

My neuropathy hit its peak a good 4-6 weeks after my last infusion containing Oxaliplatin. My oncologist had warned me that it would keep getting worse after stopping the Oxi. I think my last Oxi infusion was at 50%, and my last two treatments lacked the Oxi completely. I'm now 13 months out from my last Oxaliplatin infusion. The neuropathy has resolved in my hands (which didn't show up until weeks after my last Oxi dose) but I still have it in my feet. It's not as bad as it was, but it may never go away.

For months I was very worried the hands wouldn't get better, and was worried I should have stopped taking Oxi sooner. I now think I stopped at the right time, and am glad I didn't keep going with it. I would have been unhappy with long-term loss of sensation in my hands. You may have different preferences, but that's where I've ended up.

Hi
I’m sorry your going through this, there is such a steep learning curve and so many decisions to be made.

I made 8 treatments at full strength , 2 at reduced then switched drugs on the 11th and did not do the 12th and final treatment as my numbness had spread up my feet and legs to my knees. My hands were totally numb and I had bouts of ataxia that basically leave your hands frozen or paralyzed for short periods of time. My vision went dark a couple times and my doctor said no more. I had trouble from the beginning but was determined to power through everything to get the best odds of a cure. I should have been more forth coming about the extent of my symptoms but I didn’t have anything to compare it to. I think that’s probably how most people in our position feel.

I downplayed my symptoms to my family and the dr/ nurses because it was the way I was coping with everything- if you tell yourself and everyone around you that your fine then it helps you to just keep moving forward. I’m 14 months past my last infusion and my neuropathies are much better, my hands are only numb on finger tips and mildly on my palms. My feet are numb but ankles and up are fine now. At this point it could be permanent but I can live with it.

I am not trying to influence you, we each make the best choices we can at the time. I would do it again if needed but I would try to be more open about what I was experiencing to the drs. I risked permanent blindness and disability and I’m very lucky to have recovered as well as I have.

Sorry for the small novel I seem to have wrote here

Take care
Nordy

10 rounds with it, last 2 without. I have pretty bad issues with numbness/tingling/pain in my fingertips and feet. My hands are basically useless for much of anything

I am hopeful that my issues will resolve with time. If not, I'll find a way to live with it, assuming I'll live a really long time!

If were you, I'd discontinue the oxy. The additional benefit at this point is very small. The potential for long term or permanent damage is great.

The cold sensitivity pattern you had in rounds 1-9 is very normal. It's somewhat different from the persistent tingling/loss of sensation of neuropathy. My oxy was reduced for blood counts part way through, then eliminated at the end for developing neuropathy. Like you, they left it up to me.

The NP warned me about the flare that would likely happen after chemo, and it was nasty in my fingers. But I'm lucky that it has virtually completely gone now. Maybe the slightest tingle sometimes in my toes/fingertips. Others have not been so lucky.

I guess I'm the outlier so far. I had 12 infusions with FOLFOX with full oxaliplatin. If I had to do it all again,I would. This is not to say everyone should follow the same course. Each person is different and is diffenently affected by the same drugs. I talked with my doctor before each infusion, and we discussed all symptoms including neuropathy. While I did have the usual symptoms of cold sensitivity, tingling in my hands and feet, we agreed to continue with full oxi throughout. You and your doctor can make wise, informed decisions on what you personally should do. Stay positive!

BTW, during the flare, my sensation could better be described as burning than tingling.

I did chemo #11 without Oxy, and quit before chemo #12. That was ten years ago. No more colon cancer, still have cotton-toes. Your mileage may differ.

Thanks for all the genuine feedback!

Here is what I did:
Infusion#10- I went with 50% dose of Oxaliplatin.... for the first time, I did NOT have ANY cold sensitivity. I could drink water- way better. I debated if that the lack of cold sensitivity was due to less oxaliplatin or because my nerves are fried with neuropathy... but since I could drink without it feeling like gravel, I decided it was due to the lesser amount. I did not feel like the neuropathy spread either- but dang that is really hard to judge where my "numbness line" is... and also, the numbness did not even hit until 6 weeks post-chemo so think I have a pretty delayed effect receptor.

Infuison#11- reduced oxaliplatin down to 25%.... again no cold sensitivity. But here is the weirdest part-- I have super minimal nausea this time. With all my other chemos, I was in bed 4 days feeling "seasick" and could hardly have a conversation-- but this time I am eating and drink with my family day#1&2 still hooked up to the 5FU ball-- CRAZY!!! Was it the oxaliplatin making me nauseous this whole time?

Infuison#11- not sure-- that is Jan 28.... thinking 25% again.... I mean, I WANT to say zero. But....I guess I am stuck on thinking if this bologna comes back, will I kick myself for not doing all that I could?

Thankful for you guys!

Chemo can be so strange. I went through 11 rounds of Folfox without any "allergic" type reaction, only to have one on my very last un-hook day! Ended up with IV benadryl, extra fluids, etc. And that was my only infusion with no oxy at all. Go figure.