← Return to Radiation induced Brachial-Plexus Peripheral Neuropathy Patients

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@pattyraeb

Hello Robin and others who are suffering with this side effect from radiation. I am 62 years old (63 in mid June). I was diagnosed in 1995 with stage 4 breast cancer. I had 12 of 24 lymph nodes positive and after a modified radical mastectomy (left side), I still had cancer on the chest wall. I went through an autologous bone marrow transplant followed by the radiation. Then 10 years later in 2005 I was diagnosed with heart failure. I had a 15% ejection fraction. Within a few years, I strengthened my heart to low normal 50% EF by walking only 30 minutes a day and a low sodium diet, and medication carvedilol, lasix and potassium. I still have a cardiomyopathy, but I had come so far with God’s grace. Then 10 years after heart failure, 2015, I started noticing tingling in my fingertips while doing my fast walking. Since then it has been a slow progression of numbness and tingling and pain with loss of using my hand/grip and finger strength and arm use. This is horrible, painful and depressing. Over these last 10 years I have seen so many specialists and even a surgeon, and it is killing me that there is nothing anyone can do. More pills but this only helps with the pain and there’s other side effects that would go with that. The last surgeon said that they could help with pain but with probable more loss of function of the arm. Oh, did I mention the surgery would be umpteen hours long and with my cardiomyopathy I’d have a higher risk of dying. I have been praying since the symptoms started, 10 years, and after beating the stage 4 cancer and heart failure, I’m having a very hard time dealing with this knowing now it cannot be cured, at least to the point where there would be no more pins, needles, pain, lymphedema, etc. I forgot to mention the lymphedema. That is not too bad, and I can handle that. Just being in discomfort at varying levels All The Time is so hard. How do you all deal with it? Any advice? I really need help. I’m from SE Wisconsin area. Is anyone close to this area? I look forward to hearing from someone. It’s been awhile since anyone posted here and I am so hoping there will be a reply.

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Replies to "Hello Robin and others who are suffering with this side effect from radiation. I am 62..."

Geez, it sounds like you are really going through it with the distant side effects of radiation.
Please allow me to tag a few members from this discussion for you.
@lautwell @pamelahanson17 @krin
Maybe they will have some insights into how they deal with these same challenges.

Hello all—especially Patty. I I live in Mpls/St Paul area & have docs in MHealth system. I find that most doctors have never heard of RIBP. So frustrating that there seems to be no real help for this condition. Last I checked in I had been approved for medicinal cannabis. I tried for awhile but found not at all helpful. There are good days & bad days. I’ve also tried gabapentin & amytriptaline-not helpful. Also an array of herbal meds suggested by a pain management specialist —expensive & not helpful. PT has been somewhat helpful—“nerve glides” & “scapular punch”. I’m now in a new round of doctor appointments—getting in to see specialists takes so long. Have an appt with a Neurologist mid-June (on wait list which moved original appt from Aug 15 to Ie). He is supposed to be expert in peripheral neuropathy. Also possible appt with a physical med & rehab doc who works with cancer patients. My PC thinks I may have RA—my affected side wrist is very misshapen & painful (looks out of joint)-does anyone have that problem?
One thing that helps—my daughter crochets gauntlets for affected hand. My PT thinks it acts as a kinesthetic distraction so I’m not constantly aware of the strange numbness & pain. Also keeps my wrist warm which helps.
I’m back to using ibuprofen for pain & trying to walk 20 mins a day (though my implant knee doesn’t like it).
To all of you—keep trying! Keep smiling-there are several of us who know what you are feeling!