Darrell Posted June 24, 2006 Share Posted June 24, 2006 Hi! I've been reading quite a bit on this topic from the forum here, but I still can't discover if this is a permanent thing or not? Can someone help me out? Thank you!!!! Darrell Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted June 24, 2006 Share Posted June 24, 2006 It seems that neuropathy is a "come again, go again" thing at least as far as I go. I asked my doctor and he was very "uh" about it. It seems it can stay and get worse/better, it can go away, it can stay forever. I guess it depends on the person and the type of chemo. I had Cisplatin. I've read that all of the "platin" drugs cause this problem. Recently I've started taking fish oil and Glucosimin/Congroitin pills and they seem to be helping with the arthritic problems of neuratpothy. Maybe they would help you, too? Hope you get some good ideas about this problem. I'll keep reading, because it sure can be an annoying problem!!!! Joanie Quote Link to comment Share on other sites More sharing options...
meredith Posted June 24, 2006 Share Posted June 24, 2006 Hey Darrell! I have neuropathy as well. As far as how long it may last, it depends on the person and "degree" of it. I've got it pretty bad, so bad that for about a month I was using a walker to get around (although some of that was related to fatigue). Mine started in the toes and tips of fingers only as I was getting chemo; it was AFTER all the chemo that it started moving up my calves and hands, which is not that unusual I was told. Although I still have pain and numbness (mostly in the legs), I am walking just fine now. However, I can't run, or I'll fall flat on my face! Sometimes, I'll simply fall down because my legs seem to buckle underneath me. I also have balance problems, especially if I close my eyes or if it's dark. But it is MUCH better than it was. So, it's hard to give you an exact answer because everyone is so different. It sucks, I know, but even if it does get worse for a bit, it will probably get better with time. And unfortunately, there is no cure for the condition, but there are medicines that can help with the symptoms--Neurontin, anti-depressants, pain meds, etc, can all be of help. My doctor even prescribed quinine (yes, the malaria medication!), which is supposed to help with leg cramping (though it didn't help me much). Hope it's not too troublesome for you! And if it is, try not to be too bummed out about it, as for the vast majority of people it gets better. Quote Link to comment Share on other sites More sharing options...
Connie B Posted June 24, 2006 Share Posted June 24, 2006 Like everything in the cancer world, everyone is different. Sometimes it's forever, and sometimes it goes away. I know a lot of people that had it for a year after treatment was complete & it went away for them, and others get it during treatments and for some it gets worse as time goes on and for some it's just at the edge of being really bad, but would consider it livable or doable. Just keep in mind, everyone is different. Our DonnaG here at LCSC did swimming therapy for her's and it did some good things for her. You might want to ask her or PM her what she did. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 24, 2006 Share Posted June 24, 2006 Darrell,I was fortunate as I didn't have this real bad or real long.Although now after a long time it still comes back a little in my fingers only.I was on carboplatin and Taxol. Quote Link to comment Share on other sites More sharing options...
purplelady47 Posted June 24, 2006 Share Posted June 24, 2006 Hey there!! I also did Carbo/Taxol and experienced some neuropathy in my fingers and toes. I know it has decreased (It's been 2 months since my last chemo) because I stepped on a wasp and got stung 2 weeks ago and I sure could feel THAT!! And I recently burned my finger when removing a pan from the oven - minor burn, but I felt that too. I still have some neuropathy in my index finger and thumbs in both my hands, but I am hoping that will decrease. I make glass beads and it would be nice to be able to feel what I am holding, especially since I am so prone to injury because I am not very graceful!!! But if the sensation doesn't return, I will figure out how to compensate for the problem. Hopefully, it is just a matter of time. Pam in FL Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 24, 2006 Share Posted June 24, 2006 Hi Darrell... I found a pretty decent website that has some good answers... http://www.neuropathy.org/site/PageServer It is the page from the Neuropathy Association. On the left side is a link to a downloadable document on Chemo induced neuropathy. I have the article. If anyone wants to read it please let me know and I will gladly post it.. Chris Quote Link to comment Share on other sites More sharing options...
Donna G Posted June 25, 2006 Share Posted June 25, 2006 Hello. Yes as Connie said I got neuropathy from Cisplatin that I took. My first symtom I noticed was falling down. It got my attention! I would be out walking the dog and step from the paved path onto grass and fall on my As----. The doctor said right off it was neuropathy. Sent me to a neurologist . It affected my hands some but mostly my lower legs and feet. Good news is it got better. I don't fall down anymore. My feet have still got problems getting correct and "normal" messages via the nerves but I guess I have learned to compensate. Weird things like if I have a tiny piece of sand or gravel in my shoe it feels like a piece of glass. My feet wiggle a lot , the dr. said they are searching for information. I am glad I took the Cisplatin ( and VP 16) for here it is 8 and 1/2 years later and I am alive to tell you about it and keeping NED as a close friend. If you have any more questions, just email or send a personal message. Donna G Quote Link to comment Share on other sites More sharing options...
Darrell Posted June 25, 2006 Author Share Posted June 25, 2006 Thank you everyone! Merideth, yes it sucks. Wish I didn't have it. It's worth it to be NED though. He's given me some medicine but I'm not going to take it right now unless it gets worse. You guys are so awesome. Darrell Quote Link to comment Share on other sites More sharing options...
meredith Posted June 25, 2006 Share Posted June 25, 2006 I'm so glad you're NED!! Neuropathy indeed sucks (just another thing we survivors have to deal with!), but it's great being NED! Anyway, I've just learned to live with it even though it can be tough..... Quote Link to comment Share on other sites More sharing options...
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