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Chemo damage

I have just turned 70yrs and had 2-3 more sessions of chemo to go. Two weeks ago I saw my local doctor due to being in leg pain which had prevented me sleeping at night. I was teary eyed and down and out and had enough of my leg and the fluid on my feed which would not go down, no matter what I did. My legs would not stay still for even half a minute in bed. My doctor diagnosed me as having nerve damage to my feet.

I contacted my hospital and advised the Oncologists that I was not going to have any more chemo due to nerve damage and if I continued with the drug, my feet would no doubt end up numb. My fingers were also affected. I thought the Oncologist would try to change my mind but very surprisingly, she said she agreed. Now that I have nerves that are damaged I will have to wait out at least a year to see if it becomes permanent or recovers. This diagnosis has made me decide not to have radiation as I don't want any more damage to my body. Life has become difficult with damage to my nervous system and I don't want to risk any further damage due to radiation. I would be interested what others think about my decision regarding radiation vs nerve damage.

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Comments

  • lw422
    lw422 Member Posts: 1,375

    Malee—each of us has to make those decisions for ourselves; sounds like that was the right choice for you. Which chemo drug were you getting? Did you ice your hands and feet during the chemo infusion? When I had Taxol I did use ice and I never had any nerve damage; not sure if the ice was the reason but I'm glad I did that.

    I suppose my biggest regret was having an ALND… all my lymph nodes removed in my right axillary… 32 nodes and no cancer in any of them. 😫 So naturally now I have lymphedema and I am quite bitter about having to deal with this nightmare for the rest of my life. My diagnosis was IBC so that is the Standard of Care. I achieved pCR and am NED at this point, so I suppose the treatment was "worth it." Whether the ALND was necessary will always haunt me, though.

    Take care and I wish you the best of outcomes for the neuropathy.

  • melbo
    melbo Member Posts: 266

    I hated radiation. I didn’t hate it quite as much as chemo, but it was still fairly terrible and I had terrible skin reactions, with blisters/shingles that lasted weeks. That being said, I wasn’t in a lot of actual pain, just uncomfortable and constantly fighting the urge to scratch. Despite how much I hated it though, I’m glad I did it since it was the standard of care and I was diagnosed fairly young.

    we all have to make our own decisions about our treatment, our tolerances, and our quality of life. My understanding though is that there are few risks of long term damage from radiation, unless it’s to your left side where there is a chance you could damage your heart and lungs. Some questions I would ask you as you consider the options:

    1. Are you only concerned about long-term damage? Or is the short-term discomfort a major consideration as well? If it’s the long term that is most concerning, I would have a talk with the radiologist about the actual risks, things they do to mitigate the risk, and what options there might be. If it’s short term and long term, I would still suggest talking to the radiologist about your case, your skin, and your care since we are all different.
    2. How much regret would you have if the cancer came back and spread? Once breast cancer goes to stage 4, there is no cure and no going back. That’s the primary risk of course and why most of us choose harsh treatments. It’s always your choice whether to have treatment, but I would want to make sure you fully understand and accept the risks.

    Good luck with your decision.

  • maggie15
    maggie15 Member Posts: 760

    My nerve damage had a different cause but I ended out with brachial plexus injury pain from SLNB surgery aggravated by radiation. I also had nerve damage from thermal burns over 20% of my body six weeks after radiation ended which caused nerve damage due to scar tissue. My burn surgeon used a surgical laser on my hand and face which helped but could not use it on the irradiated breast because of protocol.

    While I did not do chemo (borderline Oncotype) so did not have CIPN I have read many medical studies on nerve injury. Nerves grow very slowly (about 1mm per day starting a month after the damage stops) which is why determining the extent of recovery takes so long. Sensory nerves recover better than motor nerves. Sometimes the nerve cell body is irreversibly damaged. Acupuncture for all kinds of nerve damage is in the preliminary stages of being studied and is something you can try.

    https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2762629#:~:text=In%20conclusion%2C%20compared%20with%20usual,significant%20improvement%20in%20CIPN%20symptoms.

    I did acupuncture for the brachial plexus nerve as well as insomnia from radiation which was quite successful. I had to wait a year to have acupuncture for my breast. It helped reduce the lymphedema which occurred there but while it lessened the nerve pain some it did not work as well as the first round of treatment (same acupuncturist.) You can take Cymbalta or gabapentin (which I use) to help with pain but it doesn't do anything for numbness. Cold laser (low level) therapy which is not a surgical procedure is safe and has been shown to be helpful in some studies, but I didn't try that since there have been no studies done on irradiated tissue.

    I am your age and in favor of QOL trumping treatment to prevent recurrence. I am skipping the recommended 10 years of AIs because I don't want to deal with even more side effects. Hopefully you can do something to help the CIPN and make the best decision for you as far as further treatment goes.

  • charlotteme
    charlotteme Member Posts: 31

    I had a long 29 week regimine of chemo - Adrimyacin, Cytoxan and Taxol in 2010. I too had very severe nerve damage and neuropathy especially to my feet. I could not bear anything touching my feet - even socks were more than uncomfortable - and I recall walking was such a challenge that I was so discouraged. Well, I still have some numbness but I wish to encourage you by saying that over a very long time much of the nerve damage has resolved or greatly improved. I am able to walk a mile most days with the correct socks and cushioned Brooks walking/running shoes. Nerve damage takes a LONG time to heal! But there is much hope for your feet to feel better in time. The good news is that I am nearing 14 years out from Stage 3 diagnosis and still here! ❤️