hawkowl wrote:My neuropathy continued to progress after treatment and now that I am more than three years out I assume it is permanent. But I also remain NED more than three years out, so at this point I have no regrets. It is (for me) definitely the lesser of two evils. I think my situation is not really the norm, but like everything in life we just have to weigh out the risk and benefits and decide where our comfort level lies. I would have him ask about taking glutamine to try and minimize the long term severity. I also have recently read about lion's mane mushroom but I am aware of no evidence based studies to confirm or refute this option
jep wrote:Hello! My husband finished chemo about 5 months ago...he has noticed some improvement with the neuropathy, but it still bothers him....so much so, that he's heading to his 2nd round of acupuncture tomorrow...he feels that it's already helping....also, the massage excercises that she suggested (along with her healing tea) all seem to really be working....my husband did 6 months of Folfox....10 rounds with oxi....
benben wrote:hawkowl wrote:My neuropathy continued to progress after treatment and now that I am more than three years out I assume it is permanent. But I also remain NED more than three years out, so at this point I have no regrets. It is (for me) definitely the lesser of two evils. I think my situation is not really the norm, but like everything in life we just have to weigh out the risk and benefits and decide where our comfort level lies. I would have him ask about taking glutamine to try and minimize the long term severity. I also have recently read about lion's mane mushroom but I am aware of no evidence based studies to confirm or refute this option
Glutamine is one of the supplements that I take as well. It's also one of the few that my Onc allowed me to take during chemo.
susie0915 wrote:My neuropathy didn't really kick in until about a month after finishing chemo 2 years ago. It has improved as I don't drop things, my balance is better, and it is basically just tingling on the bottom of my feet. It doesn't prevent me from doing anything more annoying than anything. I usually always wear shoes or slippers. I did try acupuncture which didn't help. I think acupuncture works better if there is actual pain from the neuropathy. I assume this is probably where I will be permanently but it's okay NED 3 years in September.
hawkowl wrote:My neuropathy continued to progress after treatment and now that I am more than three years out I assume it is permanent. But I also remain NED more than three years out, so at this point I have no regrets. It is (for me) definitely the lesser of two evils. I think my situation is not really the norm, but like everything in life we just have to weigh out the risk and benefits and decide where our comfort level lies. I would have him ask about taking glutamine to try and minimize the long term severity. I also have recently read about lion's mane mushroom but I am aware of no evidence based studies to confirm or refute this option
kellywin wrote:Spot on Liver/Hemangioma: I also had a spot on my liver that they wanted to "watch" it was really hard to wait through chemo/radiation to see if the spot changed so that they could rule out a met - turned out to be a hemangioma (no idea how to spell that right). Basically, they're watching to see if the spot changes, they're looking for it to stay the same to determine what it is. If it shrinks during chemo, mostly likely a met and the chemo is shrinking it, if it grows, most likely a met that isn't responding to treatment. So no change is what you're waiting for.
Neuropothy - mine peaked a couple of months after I stopped the Oxi, 5 rounds ended in August, peaked in October. I ended up getting on Neurontin/Gabapentin, and it's helped immensely. 5 years later, still on Neurontin and I've accepted the fact that it's permanent. Most of the issues I have are in my feet. However, it doesn't really keep me from doing things I like to do, like snow ski. I suppose if you were a rock climber, that would probably be a problem. However, I am here and without the chemo who knows if I would be. I'd say the biggest side effects I suffer from are surgery and radiation, chemo side effects are third.
Hope this helps and thinking good thoughts for your son, you & your family.
...Kelly
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