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Peripheral neuropathy from radiation

Harriet130
Posts: 1
Joined: Jan 2012

I was diagnosed with Non-Hodgkins lymphoma in the fall of 2008 - follicular B cell, stage 1, in my right lower pelvis. It appeared as a lump a little smaller than an egg on my upper thigh. Not particularly painful, but I knew it was not normal.

I received 18 IMRT zaps of radiation. I had no immediate side effects. After the zapping, I would go to the gym and do my normal workout. I thought how lucky am I!

Then about 2-3 months later, the slight peripheral neuropathy I felt in both feet started to get worse. For the past 3 years it's gradually getting more debilitating - more tingling and burning especially in my left foot, (NOTE: Not the side the cancer was on.)

My oncologist swears it's not a side effect of the radiation; she also swears that she has not experienced another patient still having pain at the radiation site.

I am not convinced she is right . . .

Valjo06
Posts: 16
Joined: Nov 2011

Hi Harriet130. I know EXACTLY what you are talking about. I had radiation a long time ago, 1980. Hodgkins, stage 2, but they radiated my whole torso, the lower half, for precautionary measures. I live in midwest, and back then, no one really knew much and said it was best to do the lower half. Wish now I would not have. I was fine, had two children, then in about 1992 I started noticing one leg going numb now and then, tingling, burning. It was periodic, now fast forward 7 years, symptoms were way worse, this is about 2002. It took 7 years and 14 docs to figure out I had a vertebra that broke, and they finally discovered it. I had back fusion (two times since 2003, the latter one from 2006, fusion didn't hold, new doc, thinks due to all radiation damage). Back in 1992 I noticed my right arm (which was totally fried during radiation) was going numb and weak now and then. they still do to this day and no one finds anything. I have been to pain mgmt and neurologist and my back surgeon since the second surgery. My symptoms are getting worse and they run down from my neck to my feet.(numbness, tingling, burning, pinching, weakness) The right side is worse, which took the most damage to radiation. Most of the doctors I see now, majority of them truly believe this is from radiation damage, but there are not enough docs that know enough about late effects of it and how to treat it. They all want to give you pain meds, which I do try (not a big pill taker), but they never seem to work or if they do, they aren't effective but a couple of weeks.
I get monthly deep tissue massages, which help for a week or two, and I'm starting to take pain meds on regular basis.
I suggest you make sure that radiation didn't cause you a back problem to the spine. Radiation as we know thins the bones. Possibly get an MRI. But please remember to be your own advocate and keep pushing to find an answer. It took me 7 years and constantly going to docs to tell them my symptoms were getting worse. I had many MRIs over those 7 years, and finally the broken vertebra showed up. They think the disc held it up and they didn't see the fine fracture until the disc just rubbed away and finally the vertebra fell and then it showed up on MRI. I'm not saying it's what you have, but keep this in mind. That radiation does thin the bones. I do believe almost all of my problems stem from radiation damage.
I try and keep active, workout 30 minutes a day, go for monthly massages (more if I had the money). When I'm still or sitting for periods of time (especially on my job), pain is much worse.
Again, be your own advocate and follow up with all this and don't let anyone tell you you're imagining it. I did have a few docs back then when seaching for an answer, tell me it was in my head and said I was depressed. If you do find out something that works for you, please let me know. I know of few of my acquaintances take Neurotin for neuropathy. I see the pain mgmt doc in February and will ask him about this for myself also. Good luck and keep me posted on what you find. God Bless.

Valjo06
Posts: 16
Joined: Nov 2011

Harriet: Check out website for pelvic radiation side effects. I've had two friends who've gone thru ovarian/uterine cancer with radiation to the area, and they both experience neuropathy due to radiation. Down both legs and into feet. they immediately had these symptoms within a year of radiation. Might be helpful to you.

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