Radiation induced Brachial-Plexus Peripheral Neuropathy Patients

Posted by robin0613 @robin0613, Apr 27, 2021

I am looking for other post-Breast Cancer w/Radiation to the Breast and Lymph nodes, suffering from RIBN (Found this acronym from a UK Paper). Let me say I’m sorry for your pain.

My Story: I am 65 now, I had L Breast Cancer in 1997, followed by a Stem Cell Transplant at Fred Hutch in Seattle, then Radiation to Breast and lymph node area that had 3 bigger tumors . 2006, I woke up to severe burning pain down my left arm into my fingers. I was sent to my 1st neurologist that did not have a diagnoses, I was sent for hand therapy for 2 yrs even though I knew it was coming from the shoulder (But I learnt some good hand stretches). In the meantime, I found an Angel, in a Therapeutic Massage specialist, she found the knot under my L shoulder blade, (Brachial-plexus) and immediately relieved my pain. (We would find out later, the relief was at first good for months, then like now weeks to days. I was told by Drs my muscles are loosing blood because a neuroma is attached in the shoulder area.

I’d go to 2 more Neurologist, the final one took me 7 months to get into at UWMedical (with the push from my Oncologist). By then I’d lost over 25% of the dexterity of my hand. After tests and diagnoses, I started Ot/Pt to learn how to keep my L Hand/arm stretched, dexterity exercises, and how to use my right arm to compensate for my left, trying to clip my nails on my R hand is a big chore (I thank God I am Right handed). I was told that most PN stops at some point, but mine was moving, and still is. No surgery would be worth the risk of loosing nerves I need vs the ones that are DOA. And what I could loose.

Today, my L hand feels like I have an extra small rubber glove on and stretching my fingers is a chore). I have pain up to my elbow and a knot in my back (that was a pin point last June) and now constant. I do find getting into a routine that gets me up and moving, my meds (Gebapantin allergy, so I take 90mg of Cymbalta, Tylenol and Topically I use lidocaine and a roll on CBD oil (being 65, I put off for 3 years). With constant movement and stretching, I’m working through it. I volunteer at a Food Bank.

Now I have a Palliative Pain Specialist, my Massage Therapist, Oncologist, PT/OT and neurological team. And still my PN is moving through the Nerve Roots and Path. My hand is at 80% loss, pain runs down arm from neck sometimes like I’m shooting flames from my fingers, and some days my face is numb when the weather is dramatically changing, I’ve noted Barometric Pressure causes my pain to increase. My pinky and ring finger are 100% numb. If my hand gets cold, it’s very hard to regain warmth. Most people that know me, know why I wear one wool glove in 80 degree weather. They know the weather is changing.

I’d love to start a support and information thread. I don’t know anyone with this, it’s hard to Describe my symptoms. Im blessed with friends and family that give me empathy .

Interested in more discussions like this? Go to the Breast Cancer group.

Robin, your journey with radiation-induced neuropathy, brachial plexus, pain and loss of dexterity sounds complicated and challenging. I'm tagging @pedie @susan24 @lorirenee1 and @lauries as I believe they have somewhat similar experiences to share.

I'm so glad that you have access to a palliative care pain specialist along with OT, PT and neurology specialists. How long have you been with a palliative care team?

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@colleenyoung

Robin, your journey with radiation-induced neuropathy, brachial plexus, pain and loss of dexterity sounds complicated and challenging. I'm tagging @pedie @susan24 @lorirenee1 and @lauries as I believe they have somewhat similar experiences to share.

I'm so glad that you have access to a palliative care pain specialist along with OT, PT and neurology specialists. How long have you been with a palliative care team?

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Hi Colleen, 6 yrs. I still see my Oncology Team after 23 yrs, I’m fortunate, so he referred me, and I’m now on Medicare and supplement, they both accept this.

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Hi Robin, I found this thread through a Google link, after reading that British paper. I am just starting the process of getting diagnosed with the radiation induced brachial plexus neuropathy.

I got triple negative breast cancer in July of 2020, did chemo through december, surgery in February, 7 weeks of radiation in 2021 just about a year ago, and a chemo pill that I stopped last month.

In January I started to notice my hands were tingling, but I thought it was maybe delayed neuropathy. I'm doing physical therapy for my surgeries and we started to notice I was losing my grip strength, and ceased being able to lift heavy things with my right arm. It's progressed to whole arm numbness, I can't lift my coffee cup without spilling it. The neurologist is referring me to a muscular skeletron neurologist, sorry about the random typing I can't type on my phone anymore LOL. My oncologist and neurologist are pretty certain it's radiation induced as my neck was radiated for six weeks because the cancer had spread to my chest wall and lymph nodes and many other difficult to reach places.

Very interested in a support thread, I am 40 now I was 38 when I was diagnosed and I have a two-year-old so lifting is pretty important to me and I'd love to chat with other people who are having trouble with it.

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@seathink

Hi Robin, I found this thread through a Google link, after reading that British paper. I am just starting the process of getting diagnosed with the radiation induced brachial plexus neuropathy.

I got triple negative breast cancer in July of 2020, did chemo through december, surgery in February, 7 weeks of radiation in 2021 just about a year ago, and a chemo pill that I stopped last month.

In January I started to notice my hands were tingling, but I thought it was maybe delayed neuropathy. I'm doing physical therapy for my surgeries and we started to notice I was losing my grip strength, and ceased being able to lift heavy things with my right arm. It's progressed to whole arm numbness, I can't lift my coffee cup without spilling it. The neurologist is referring me to a muscular skeletron neurologist, sorry about the random typing I can't type on my phone anymore LOL. My oncologist and neurologist are pretty certain it's radiation induced as my neck was radiated for six weeks because the cancer had spread to my chest wall and lymph nodes and many other difficult to reach places.

Very interested in a support thread, I am 40 now I was 38 when I was diagnosed and I have a two-year-old so lifting is pretty important to me and I'd love to chat with other people who are having trouble with it.

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Welcome, @seathink. I'm glad you found this discussion group and @robin0613, who also has radiation induced side effects. Seathink, did your doctor deduce that you have brachial plexus?

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Right now they believe it is quite likely, but I am going to meet with the neuromuscular neurology team here at UCLA to confirm and transfer care for this. The neurologist is expediting that appointment and it should happen in a couple weeks.

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@seathink

Right now they believe it is quite likely, but I am going to meet with the neuromuscular neurology team here at UCLA to confirm and transfer care for this. The neurologist is expediting that appointment and it should happen in a couple weeks.

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I am so sorry you are going through this. There are slings and other options to help support holding a baby now, that we didn’t have 40 yrs ago. I hope you are finding help that way. Please stay positive, and keep telling Cancer that it does not belong in your body. May you stay free forever.
. My BPN oddly started overnight 10 yrs post radiation. I was told the symptoms usually only last a few years, 3-5., the digression won’t reverse. Since I started this thread, for FYI only, I am dealing with trigger fingers (thumb, pointer and middle finger) , PT has strengthened all but the thumb. I’ll be doing daily exercise and brace to keep it working. I have looked at all options of pain techniques and implants and have decided to reconcile with the BPN. The cymbalta takes the edge off the days it’s painful, otherwise it’s just uncomfortable. If I was younger, other of the options maybe more beneficial. Keep advocating for yourself if you feel one medication is not helping or is causing you other issues. It’s important to understand and communicate with your medical teams protocols for you that work or not. I wish you the best of health @seathink

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@gillooly

What is BPN? Thanks

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Brachial plexus neuropathy, in this context the injury is caused by breast cancer radiation. Do you have these symptoms?

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Radiation near or at the neck side effect that causes nerve damage later on where you lose the ability to use your arm and hand.

Mine's just starting so I've lost only 20% functionality and about 10-12% muscle mass. It started with numb fingers and then my arm went numb, your handwriting (if dominant hand) gets bad and weakness starts in.

Thanks, Robin. He's 40 pounds at 2 so we had to shift out of the slings. 🙁 But my PT coached me to tell him to put his arms around my neck and then I can scoop him with my left. It's getting pretty strong! Also, I am ambidextrous so switching left is not bad.

Will keep you posted on what the musculoskeletal neurology team says.

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@gillooly

What is BPN? Thanks

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Brachial Plexus Neuropothy, synonym for this discussion. Mine started with tightness under my Left Shoulder, then tingling in my hands and arm. I now have 80+% loss of use. Luckily I am right handed.

Robin

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Hi @robin0613

So update for you. Saw the neuromuscular specialist on Wednesday and got my EMG. Her findings were enough for me to get the official diagnosis of brachial plexus.

She was a real piece of work, much more into esoteric nerve diseases and really contemptuous of my "not very rare" problem and told me that "with good diet and taking care of your body I'm sure you'll be fine."

Luckily since the first neurologist had me loop in my radiologist, she's put me on steroids with a taper, we're doing trental and vitamin E, and I'm meeting on Tuesday with the hyperbaric oxygen treatment team to start that up here as soon as possible.

She got involved after the initial consultation with the neuromuscular neurologist, I think after I told her that the gal said the only treatments would be vitamin b and OT. 🙄

I saw my physical therapist for my cancer surgeries yesterday, and the lame neurologist also got me set up with OT which should start in June.

I asked the specialist what the timeline would be and she said oh every patient is unique, "you're special", and I asked her about continuation of care with her and she seemed surprised that I would think I would ever see her again. After that I asked the first neurologist if I could see him, since she said the only thing she would do is another nerve test if things regress, but alas my general neurologist feels way over his head so he declined, sadly.

I meet with my radiologist a week from Monday and I'm going to find somebody else at UCLA who can be my neurologist for all this, LOL.

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@seathink

Hi @robin0613

So update for you. Saw the neuromuscular specialist on Wednesday and got my EMG. Her findings were enough for me to get the official diagnosis of brachial plexus.

She was a real piece of work, much more into esoteric nerve diseases and really contemptuous of my "not very rare" problem and told me that "with good diet and taking care of your body I'm sure you'll be fine."

Luckily since the first neurologist had me loop in my radiologist, she's put me on steroids with a taper, we're doing trental and vitamin E, and I'm meeting on Tuesday with the hyperbaric oxygen treatment team to start that up here as soon as possible.

She got involved after the initial consultation with the neuromuscular neurologist, I think after I told her that the gal said the only treatments would be vitamin b and OT. 🙄

I saw my physical therapist for my cancer surgeries yesterday, and the lame neurologist also got me set up with OT which should start in June.

I asked the specialist what the timeline would be and she said oh every patient is unique, "you're special", and I asked her about continuation of care with her and she seemed surprised that I would think I would ever see her again. After that I asked the first neurologist if I could see him, since she said the only thing she would do is another nerve test if things regress, but alas my general neurologist feels way over his head so he declined, sadly.

I meet with my radiologist a week from Monday and I'm going to find somebody else at UCLA who can be my neurologist for all this, LOL.

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Hi Seathink , When I just read your post I was shaking my head . I too am having bad experience after bad experience , with the oncologist not providing any help to me at all . She has not guided me on the thoracentesis appts , left it all up to me . Then after 4 calls , 4 days in a row , just to get booked in with them , so I can BREATHE , a new oncol is on the scene , and books me in at the other downtown area hospital , at the very opposite end of the county , and 1/2 hour appt time is overlapping !!!!! If these people cannot even get appts right why the heck do i want cancer care from them ??? Esp stage 4 !! It's so degrading , when I point this out to me , they offer another 3d day in a row , instead of picking either the 1st or 2nd day at either hospital , while I am already THERE . Arrrggggg. Not like we ever get around to the CANCER part of my treatment . Just so LAME , and unprofessional , to say the least . They have also given incorrect advice on B12 amounts to take ( huge overdose ) which I caught , have prescribed for a tiny bit of osteoporosis an "end stage renal failure calcium" prescription ( DON'T HAVE THAT LUCKILY ) which I did NOT take , etc etc etc . The nightmare continues ! I am losing my mind with their missteps , so dangerous and continual . How can I ever focus on getting better , with the endless constant STRESS they cause ? Just thought you maybe could relate with all this nonsense, and I wish you the very best for improvement . HUGS .

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