First, I want to thank all of you for your wonderful input and encouragement during my 5 sessions of Docetaxel. I survived, my PSA for the last 3 months has come down to 0.2 from 15.5.
Exercising like crazy to try to get my strength back and it seems to be working. The only lasting side effect is that I have neuropathy in my feet. Not debilitating pain, but very uncomfortable. I am currently taking gabapentin but it does not seem to have much effect.
Any success stories any of you have on how to make it go away would be appreciated.
Gabapentin and pregabalin help and one has to increase the dose until some relief is achieved. The max dose of Gabapentin is 3000 mg a day. Some people also try pregabalin to see if it makes a difference.
I got neuropathy in my toes during six rounds of docetaxel. It started with the small toes and worked its way along them all. Once the treatment was finished, the neuropathy slowly disappeared in reverse order. It finally cleared from my little toes about 3 or 4 months after treatment. Chemo really knocked my cancer back. I hope you have similar success.
My PSA dropped sharply from diagnosis at 103.0. After chemo it was down around 1.0. It continued to decline slowly for about 6 months after chemo finished until it hit a nadir of 0.17. It stayed low for another 1.5 years and then started climbing slowly. When it reached 1.0 this past January, my oncologist added bicalutamide which dropped my PSA back down sharply. Today, which is over 3 years since diagnosis, my PSA is 0.10 and I am feeling great. My bone mets were no longer visible on my latest bone scan. Keep us informed about how you are doing.
Oh Mark such GREAT news. My PSA went from 15.5 in February and now it is at .2 as of August 10th. I get PSA tests every 30 days so very hopeful it stays low. I am recovering quite well from the chemo and energy coming back.
I'm surprised to hear that your foot neuropathy is painful. In my case, it was more of a "crunchy" feeling in my feet, like walking on eggshells, but no pain. Infusion nurse told me that it might take up to a year to disappear, but that was 4 years ago, and it's still with me to some extent, likely permanent. But early chemo did me a world of good, and here's hoping it does the same for you.
Thanks GarbYes yours is a better description - a "crunchy" feeling in my feet, like walking on eggshells, but quite painful at night. Seems to get better during the day when I am walking.
This may sound strange but here goes. I had severe neuropathy, I think it was in my neck or shoulders. It was years ag. I was on gabapentin and it helped. One night I got really high on very strong cannabis. The next day the pain was gone and never returned. It is known that some canabinoids can have a balancing or resetting effect. I think my pain threshold was reset. Several doctors I asked said it sounded possible.
this was years ago and i don't remember what i smoked or vaped. it was probably something i grew or from a neighbor. i would just get the strongest stuff you can get and get totally ripped. i rarely get stoned but live in the "Emerald Triangle" and everyone here grows. we even had to put in a few plants so so people would trust us
i like sour diesel because of the high humulene content which i like the smell of and is also an anti inflammatory. i have no idea if it will reduce neuropathy caused by chemo but it is a pretty low risk possibility. whatever caused my neuropathy was of course never determined but it did not go away on its own and i needed a fairly large dose of gabapentin which i did not like. i was not expecting the pot to do anything, i was just tired of the pain and wanted to forget it for a while. for some reason my body readjusted its pain threshold and never had that pain again. it is not pain unless your brain interprets the nerve signals as pain, at least that is my theory.
i don't have any pot left but do have a lot of resin if you have a way to smoke it. just a cheap vape pen would do. i have no idea what you can get at dispensaries but you should be able to get something strong enough.
if you can't find anything i could send you some of the resin. i know plenty of old people who figure they might as well get stoned. i very rarely get high but should more often. i made some oil with high CBD which really helps me sleep but i also made a bunch of high THC which i should try. others say it works well but i haven't tried it yet. if that neuropathy ever comes back i will try it before using gabapentin. i tolerate gabapentin well but still like to limit what my liver needs to deal with now that i am on so many drugs.
Peripheral neuropathy increases progressively and exponentially with subsequent doses of docetaxel. So the best thing you can do is to NOT have a sixth dose of docetaxel. Perhaps many oncologists are not aware of this. I would refuse (decline) another dose as it is already a severe and permanent side effect that likely get get worse with more.Rather ask to be switched to cabazitaxel if more taxane chemotherapy is felt needed. It does not produce neuropathy by the same mechanism
My PSA Oct 2018 425 started Nov Biclutamide 150 mg + Zoladex injection 3 monthly then 6 rounds Jan 2019 Doxetal continued both Biclutamide/Zoladex for 1212 months then stopped Biclutamide .2021 still have some foot natropthy PSA currently 0.4 been on steady decline but last 12months 1.2-0.4 .
I take Neurontin/Gabapentin 600mg in the AM and in the PM. It works for me.... but as I told my neurologist on Wednesday.... It's like Tinnitus.... don't think about it and you won't hear the humming (steam leak).... don't think about your foot (feet) pain and you won't feel it (mind over matter)....
Hi tceI completed my chemo in October 2019 and suffered badly with peripheral neuropathy in both feet as follows. Firstly, I had the sharp pains which felt like an electric shock, or being stabbed with a knife. These went on for some time, gradually fading away and then disappearing by May 2020. The worst effect has been the feeling of numbness along the sole and instep of both feet. This has never gone away and approximately 30% of each foot feels numb. If anything, it has got slightly worse. As a result of this and the fact my balance has been shot to pieces, I now use a stick to walk any distance, especially on uneven surfaces.
I wish I had been told about chilling feet and fingers during chemo. Not sure it would have made any difference, but it would have been worth the try.
Hi Dastarly:Thanks - I did wear ice packs during chemo but still have the neuropathy in my feet. Tolerable but a pain in the neck. I too have some balance issues. Exercising a lot to help the balance. Did your chemo work????
Hi Tom.Yes, my chemo did work. Some of the larger bone mets decreased in size and a few of the smaller ones disappeared. I started chemo in June 2019 and my PSA became undetectable until July 2020 when it began to rise slightly. It is still only 0.25. I have been on Zoladex since March 2019 so it is a case of so far, so good. Just as well as that is the only treatment I am on currently. My Onco doesn't believe it throwing everything at the cancer from day one, because he believes a carefully staged approach is better. I hope he is right. Apart from the physical changes due to Pca, my emotional state has changed as well. I used to be an out and out pessimist, but now, I am an optimist and feel better for it.
Don't rag on yourself about not doing the cold packs. My husband did the whole nine yards of ice mittens and socks during his 10 chemo sessions, which he and I swapped out during the infusions. He still got neuropathy exactly as you describe and also has balance issues despite years of tai chi. He uses a hiking pole in situations where he once could practically balance on one toe! Going barefoot in the house is sometimes a challenge as well. He bicycles like a maniac, took the gabepentin--did all of it and still has a noticeable level of neurotpathy in his feet and fingertips.
If it's any consolation, his chemo + Lupron regime has kept his PCa at bay since chemo ended in May, 2020. His last CT scans a month ago were stable--very low ALP; low PSA (not a good indicator for him). He's not kidding himself that this will go on indefinitely, but right now he's "good." The neuropathy is a pain, though.
Hi spouse21Sorry that the cold packs didn't work for your guy, but at least he gave it a chance. I have come to learn that chance plays a big part in prostate cancer. There is always a chance that either this or that will work, but probably a much bigger chance that it won't. Sometimes it's worth a try though. We all do what we can to get by.
Hi Tom - yes it worked for me after Docetaxel. I had never had acupuncture before and was certainly skeptical. I think I only went about 6-8 times before covid shut everything down. I put a post on this under my profile. I don’t remember exactly but it was probably about 5 months after chemo. I felt goofy doing it at first. But after a few times my feet we’re getting better. My feet are about 90% back to normal and most days I don’t notice anything about my feet unless I think about how they are feeling
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