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.

burakbolluk

Hello cbcbasket,i see that your issue was 9 years years ago, I am having the same issue just now,3 years after my bilateral Radiotherapy on my neck I stared to feel tingling on the upper left arm (deltoid) at the beginning, then it spread to my bicep and tricep and it got weaker within 6-8 months and within a year I completely lost the function of left arm but my hand works, I have numbness on first 3 finger, I got very evident atrophy on my left arm muscles; after some time it also stared moving to my right arm in exact sequence I am on the 7th month. but since right is my dominant arm I think it will take longer then 8-9 months it is now functioning 20%, my hand is working as the left one. in this 18 moths, I have tried Japanese medication called Radicut -(Ederavon), Cortisone steroids, hydrotherapy, physiotherapy, acupuncture, various medications (neurotin ecc), vitamins but nothing has help… I am desperate for a help… how did it work out for you?