radiation induced brachial plexopathy

cbcbasket

I am now 63 years old. I had oral cancer, and was treated with Cisplatin and radiation. They beat me up pretty good, and I have several residual issues but the cancer is gone. About three months after my last treatment, I started getting numbness and tingling in my finger tips. It spread within a month or so all the way up my arms, into my shoulders. I had meds, therapies, tests, etc., and nothing stopped it. The final disgnosis was radiation induced brachial plexopathy. It may be permanent. I have constant numbness and tingling, mostly in my hands and fingers. My dexterity has been affected. I can't play guitar anymore, which I had done since age 12. I gave up tennis, something else I had done most of my life. I drop things all the time. I can't maintain a constant grip. Typing is a time consuming and frustrating experience. The good thing is there is NO PAIN, thankfully.

Has anyone out there had anything like this? Do you still have it? Did it go away? Is there anything I can do? Anyone I can see? Trials underway? Research?  I am learning to adapt, and I still have hope, but it gets me down sometimes.

LiseA

This sounds awful.  Is it

This sounds awful.  Is it certain to be a side effect of radiation, or the combo with chemo?  Or even just from the chemo?  I'm wondering because my sister only had chemo, over a long period of time, and she had similar problems.  

I sure hope it's not permanent. 

Noellesmom

Yes

My husband has this.  Jim takes neurontin to help lessen some of the symptoms.  It does seem to help.

cbcbasket

LiseA said:

This sounds awful.  Is it

This sounds awful.  Is it certain to be a side effect of radiation, or the combo with chemo?  Or even just from the chemo?  I'm wondering because my sister only had chemo, over a long period of time, and she had similar problems.  

I sure hope it's not permanent. 

They tell me it is mostly

They tell me it is mostly from radiation damage, but chemo can do it as well, usually in the lower extremitites too. It has not improved since my post. I am learning how to deal with it better. Second opnions did not help. I also have inner ear damage from the Cisplatin, which makes me a little dizzy and has damaged my hearing so I now wear hearing aids. And it damaged my kidneys somewhat. All seem to be permanent.

cbcbasket

Noellesmom said:

Yes

My husband has this.  Jim takes neurontin to help lessen some of the symptoms.  It does seem to help.

Neorontin had bad side

Neorontin had bad side effects for me and did not help at all.