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| For Trent-CI Peripheral Neuropathy? (Read 334 times) |
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posted: 8/18/2008 at 12:49 PM |
I think I saw somewhere that you were a Doc, or at least play one on TV. I've been done with treatments for nearly a year (mid Oct) and still have some effect in my feet and fingers. Nothing particulary painful, just numb or tingly, with the feet being more noticable than the hands. There seems to be some variation from day to day, but over all, its about the same since it started. One of my docs says it will most likely go away eventually, but might take "awhile", the other says probably not. Any information I can find on the internet seems to be equally as conflicting and vague. I've tried Lyrica and Alpha Lipoic Acid with B6, neither seemed to have an effect.
It doesn't really keep me from doing anything I want to do, but it does affect my balance a bit on uneven surfaces and I'm a little funky on treadmills. Its more annoying than anything else, but it would be nice if I could look farward to it going away.
Any experience or info you could share to point me to would be appreciated. Post here or email csahms@hotmail.com, whichever you prefer. |
| I need more cowbell. |
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| view log Funky Monkey |
posted: 8/18/2008 at 6:38 PM |
Why do you have the neuropathy? (I am not sure what the CI is.)
I am happy to email you, but if you are comfortable sharing and think it will help other readers, we can continue here. Let me know...
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| It's all fun and games until the flying monkeys attack. |
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posted: 8/18/2008 at 6:52 PM
modified: 8/18/2008 at 6:55 PM |
CI = Chemotherapy induced.
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Running in Belgium
Ann
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| view log Funky Monkey |
posted: 8/18/2008 at 6:54 PM |
| Ahh, thanks Ann. Craig, do you want to discuss this privately or publicly? |
| It's all fun and games until the flying monkeys attack. |
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posted: 8/18/2008 at 8:31 PM
modified: 8/18/2008 at 8:32 PM |
| Public is fine, thanks. I just can't seem to find any real decisive information on it. I know that they always say speak with your doctor, but I even get conflicting information from them. Just looking for additional input. |
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posted: 8/23/2008 at 12:02 AM |
| Hi Trent, I'm an oncologist so deal with this a bit. What chemotherapy drugs did you receive? Cisplatin? Vinblastine? |
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| view log Funky Monkey |
posted: 8/23/2008 at 12:24 AM |
| Oh, hey, thanks. Got busy at work and this dropped off my radar. I'm sorry. I would also ask what has been tried so far for the CI PN. |
| It's all fun and games until the flying monkeys attack. |
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posted: 8/23/2008 at 1:47 AM |
Thanks, and no problem. I was on Alpha Lipoic Acid and B6 during therapy and for about 6 months after. That didn't seem to help, so we tried Lyrica for a month, with no effect. Running does seem to help, at least when I'm actually running, and there is some variation from day to day, but the bottom of my feet generally feel numb, and every now and then I get some mild "needle and pins" sensation.
Doc Joe, thanks for jumping in. I was on Oxilaplatin, Lucavorin and Flororacil(sp?) |
| I need more cowbell. |
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| view log Funky Monkey |
posted: 8/23/2008 at 3:22 AM |
| Did they talk about any tricyclics (like amitryptilline), antiepileptics (like valproic acid) or steroids? Different folks can get relief from those, although I am not sure about the specifics of CI PN with them. |
| It's all fun and games until the flying monkeys attack. |
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posted: 8/23/2008 at 12:52 PM |
No, there was one other type of therapy my oncologist mentioned, but I'll have to get back to you on that, as I can't recall the name. Seems like it had something to do with some type of device to stimulate the nerves.
If it stays the way it is now, that's fine, but it sure would be nice if it eventually went away. Running over the ground I'm fine, but when I have to run on a treadmill, the lack of feeling in the soles of my feet makes me a little unsteady, so I have to hold on to the rails most of the time.
Thanks for the response, and don't go out of your way, it just seems like there's alot of conflicting info out there on this and I'm trying to get as much info as possible. |
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posted: 8/23/2008 at 12:57 PM |
Oxaliplatin is relatively new and the potential for long-term peripheral neuropathy had been until recently underappreciated. The good news is that if you are a year out, I think there is definitely a chance this will continue to improve. Some of my patients report ongoing improvement for up to 3 years. The bad news is that it will probably not completely normalize. CI induced neuropathy is particularly difficult to treat, more so for some reason than diabetic neuropathy for example. Most of the medications that can help other types of neuropathy, such as Lyrica and Neurontin, have not been shown to be better than placebo in most studies. For oxaliplatin specifically, using calcium and magnesium during the infusion appears to reduce the incidence and severity of neuropathy but this was pretty controversial at the time you were being treated so would guess you may not have received that. One year out I think it would be unlikely to help but I suppose you could try it (a couple Rolaids per day would do the trick). Most of the treatments are directed at the painful component of the neuropathy. I don't know of anything besides time that helps the loss of sensation. We are conducting a study with the Mayo Clinic looking at a topical compound that may help with the painful neuropathy, we should have results in about 6 months so if that turns out to work I'll definitely give you a heads up.
On another note, if you live in a cold environment and run outside in the winter, the cold will probably bother it a lot more. Oxaliplatin induced neuropathy seems to be more temperature sensitive than other types of neuropathy which I'm sure you already experienced during the treatments if you tried to drink anything with ice.
Good luck, hopefully this will be a lot better a year from now! |
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posted: 8/23/2008 at 10:05 PM |
Thanks for the additional info. I'll try the Rolaids thing for a while......it'll definitely be the cheapest thing I've taken...lol.
I finished treatments last Oct and really started back running again immediately afterwards. I ran pretty much all winter, although winter in SC is relatively mild. The cold wasn't too tough on me. I just wore gloves most of the time. None of the "shock" sensations that I would get during therapy. Not being able to drink anything cold all summer in SC was pretty miserable.
Like I said, I can deal with it as is, but if it gets better, even if it doesn't go away completely, that'll be even better. Thanks again for the response.
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