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Change in chemo cocktail-Maintenance dosage
Yesterday I had my seventh infusion of Folfox which until this infusion has included oxsalliplatin (please forgive my spelling).
Since the sixth infusion, I’ve developed severe pain and curling in my toes as well as difficulty using my fingers, such as typing or holding small objects.
Dr Hobday at Mayo Rochester had suggested to me in comments because I was having so many days feeling poorly after chemo, this is before I had the really bad pain in my toes, that it might be time to reduce chemo dosages.
My local oncologist told me he already had reduced the heavy duty chemo drug, and he thought with the neuropathy signs. It made sense to remove this drug entirely.
He says now I’m on a Maintenance dose and will have a CT scan sometime after the eighth infusion.
I asked him if he could give me any idea of potential life expectancy on this Maintenance dosage. He said he could not. But he also told me there was no point in a follow up colonoscopy that I would be due for because of pre-cancerous polyps removed three years ago.
My oncologist recommended two possible medications to help with the nerve pain. One is gabapentin. I reminded him I’m already taking gabapentin for nerve pain caused by severe spinal issues.
The other drug he mentioned is Cymbalta. He says this is for depression, but has the side benefit of sometimes helping nerve pain. I assured my oncologist I’m not depressed. He responded This drug would not be for depression, but for nerve pain.
Do any of you have experience with being on this Maintenance chemo and how long you have been able to do that without tumor growth.
Also, any comments on taking Cymbalta for nerve pain?
Thanks and good wishes to all of you!
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'm sorry you're dealing with this. The toe curling, pain, and difficulty using your fingers sound very much like oxaliplatin neuropathy. Many patients reach a point where the side effects outweigh the benefit of continuing that particular drug, so it doesn't surprise me that your oncologist decided to stop it.
I can't speak to your specific prognosis, but I can tell you that many people remain on maintenance therapy for months or even years if their scans remain stable. In my own case, I have been on maintenance 5-FU for more than six years. My scans have remained stable, and I continue to receive treatment every 14 days. Everyone's cancer behaves differently, which is probably why your oncologist was reluctant to give a life expectancy estimate.
As for Cymbalta, although it is classified as an antidepressant, many cancer patients take it specifically for chemotherapy-induced neuropathy. Several people I've spoken with have found it more helpful than gabapentin for nerve pain, while others had little benefit. Unfortunately, neuropathy seems to be very individual.
One thing I wish more patients knew about is the use of cold mitts and cold booties during oxaliplatin infusions. Some patients have reported less neuropathy when using them, and there is growing interest in cold therapy as a way to reduce nerve damage from chemotherapy. While it may not help once neuropathy is already established, it could be worth discussing with your oncology team if oxaliplatin is ever restarted or for others who are just beginning treatment.
I have dealt with neuropathy myself and know how frustrating it can be. If Mayo is involved in your care, I would be interested to hear what Dr. Hobday thinks after your next scan.
Wishing you the best with infusion number eight and hoping the CT scan shows stable disease and that stopping the oxaliplatin gives your nerves a chance to recover.
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3 Reactions@mcharlesfrancis
Thanks so much for all the info and encouragement.
My oncologist did say if the neuropathy symptoms go away we might think about adding oxciliplatin back in.