radiation-induced brachial plexopathy

thanks as always Binney.. I directed a lady to your web site who has RIBP.. I enjoy blogging and having two keeps me occupied!!! The two problems did not really mix in one blog

thanks for your info .. I have just started to use them so will see how I go ..

Hi KS1 I am so glad to hear of your success using VitE and Pentoxyfiline and a Biophophate.. may I ask what Biophosphate you take? You were very lucky to have a radiation oncologist four years ago who was knowledgable enough to put you on these mediations. May I Ask who that was and which hospital? It is very difficult to find doctors who support this treatment they just seem to say there is no cure.. Even Dr Stubblefield who is a specialist in this area does not prescribe them even though people are having success with them ... My GP has written me the scripts with the approval of my RO but I had to tell him about the treatment!!! ... Stay well Helen

Hi Helen!! It is so sad that we need to go to the Internet to look if it is something to stop the progressing of this tremendous disease. I'm breast cancer survivor since 1997, at the beginning I just developed lymphedema in one of my arms, but 4 years ago I was diagnosed with RIBP, my oncologist told me that there was a new lymph nodes transfer treatment in MD Anderson at Houston Tx that it maybe can help me with the symptoms, I went to see Dr Nguyen, but he told me that first of all my lymphedema wasn't that bad and the surgery will not help me with RIBP symptoms, so I decided not to go through the surgery, I asked my oncologist about taking pentoxyfylline and VitaminE but he didn't prescribe pentoxyfylline because he said it will not help me, he just recommended to take vitamin e, but now I feel RIBP is going worst. I had heard about stem cells treatment but it looks like it isn't approved by ADA in USA so I'm not sure, what do you think? Had you heard of it?

PS marga.. I have not heard of the of the stem cell treatment ar this stage ..

Hi Tomboy I do not see a post where you have offended me or even a recent post so no problem there.. Even though our problems are for different areas of the body our treatments are often the same .. This forum has always had such good infomation and I hope I have been able to share something positive too.. So no problem... helen :

How were you all diagnosed? Tests? Type of doctor? I'm 5 years post rads and have recently had increased pain, tingling and dropping things.

Linda KR i went to a neurologist and there were a million tests as it is one of those things that they work ar by eliminating everything else... From my symptoms and medical history the neurologist diagnosed Lumbar Plexopathy ( i had pelvic radiation ) at my first visit but my blood work was also showing autoimmune issues... Ihe wanted to eliminate this as a problem.. I had scans and MRIs blood tests etc etc ...Neurological studies.. They also have to eliminate any cancer reoccurance causing the problems ... But at the end of all this it was still nerve damage due to radiation.. There is no cure ... But physio can help .. If you live in the US Dr Stubblefield is a rehab Dr who specializes in this area or he maybe able to connect you to a Dr in your area ... There is also lots of good info on the Web site linked to this forum for Brachial Plexopathy post Breast cancer treatment ... Getting diagnosed early could help to stabalize it .. Hope this helps Helen

Thanks for all of your responses. These are new symptoms, so I plan on mentioning them to my doctor at my next visit in a couple of weeks. Also, planning on having her refer me to the LE specialist again too, she knows my history.

Linda

Marga, did you ask him what his success rates have been with this, especially on the radiation-induced plexopathy? There are other causes for brachial plexopathy (like shoulder birth injuries in infants, or motorcyclists who lay their bikes down on the street--yikes!) that are more "fixable" than that caused by radiation, so you might want to clarify that with him too. Radiation injury is more than just scar tissue. Scar tissue removal from nerves is sometimes part of node transfer surgery for lymphedema (Dr. Marga Massey, for instance, has talked about that) but whether it helps with any aspect of RIBP or not I don't know. Even if it could provide pain relief it might be worth considering, but I've never seen any claims one way or another. Could you ask him if he has any studies he could share with us? I'd be really interested to know what his experience has been.

Hugs,
Binney

Good luck, Marga!! I hope you get some good answers.

Breast cancer: The Gift That Keeps on Giving! My breast cancer was ignored on my first mammogram (misread by the radiologist); I watched as my cancer grew for a few months, then demanded another mammogram at a competing hospital. By then, of course, it was widespread and metastasized to my axillary lymph nodes. Went through chemo just fine (had acupuncture throughout), but as a redhead with very pale skin, radiation burns caused me to have multiple plastic surgeries to remove most of the burn tissue & I had to have a TRAM flap. One morning during radiation I woke up & could not move my arm. As it turns out, after an EMG, the axillary nerves to two of my four rotator cuff muscles had been annihilated. Can't really use that arm for much of anything anymore. Oh well...

Colleen, welcome, though I'm really sorry for the reason that brings you here. Have you gotten OT help with the problems of being one-handed in a two-handed world? Hoping the physical pain is well under control, and sending gentle hugs,
Binney

Hello .... This is probably an absurd message ... and I so admire the courage of so many people who are posting here. I have a question if I might ... and I don't know exactly where to turn. Perhaps you might be good enough to help me. (If you just laugh and say 'please go away' I will I promise absolutely understand.)

My situation is this. In mid January 2016 I, a 60 year old Caucasian male, found a small lump in the middle of the palm of my left hand. (I'm in the UK I should note with its failing NHS.) It was small. The lump that is. No one else would really notice. I waited a few weeks to see if it would just go away of its own accord but it didn't. I made an appointment with my GP. He said it was 'trigger finger' and I could have steroid injections if I wanted or just wait and see. Somehow that didn't seem right to me as I thought I could sense small callus like lumps under my litter and ring finger on my right hand too. I looked these up on the internet and found Dupuytren's Contracture/Disease. The last thing on earth I wanted was a contracture. (Blessedly I still don't have one). I didn't know what to do ... and what I was reading and seeing in pictures made me panic. (I'm an expert at panic.) I turned to the International Dupuytren's Disease Forum. I read there that many people had been successfully treated with radiation and that it had obliterated the DD in 83% of cases. I went to see a private radiology oncologist. He said I had very early Dupuytren's Disease (DD) in my left hand and even earlier in my right hand. He signed me up for a package deal. I had two sessions of 3gy each on both my hands. I was feeling distinctly strange about the treatment. They had been a little too eager to sign me up and get my (many) monies. I decided to stop the treatment because I found someone in the UK for whom the radiotherapy programme had failed and who had turned to a massage therapist who specializes in DD. Her DD (and she had previously had breast cancer) had now been contained for some years through the massage therapy. I also went to a second private radiation oncologist for a second opinion. He said that I didn't need treatment on my right hand at all ... and that I should just wait and see vis a vis the left . I have carried on with the massage therapy since - I have had three sessions - and the lumps on the right hand have all but disappeared (they were ever only below the skin line) and the small lump on the left palm has remained stable if not even shrunk and the small amount of puckered skin surrounding it has risen back - or is rising - back to its normal surface. I am well pleased. .

The reason I am posting here is because approximately two weeks after I had that 6gy of radiation (two sessions of 3gy each delivered in two minute sessions in very glitzy surrounds) I was sitting at my desk and suddenly felt an painful electric shock in my right elbow. Shortly thereafter I felt an electric shock in my right shoulder area. I also for a couple of days had intermittent tringling/crawling sensations over the top of my right hand. Happily these have not now reoccurred. That said I have sensed - and I stress sensed as I know full well I could easily pass any hospital neurological examination even as I currently am - that my right arm is weaker than my left - even though I am it's true capable of lifting all that I could before. Definitely I have had muscle tightness in the right forearm. I should explain that I do have some severe foraminal stenosis - certainly not at anyone's surgery stage - on my left side ... and I had a renewed MRI with the results last week which now tells me I have an impinged nerve at C6 (very common) on the right side - which had always been my better region. (Funnily my neck does not hurt ... and I am really not at the moment in any what I would call - by any measure - extreme pain ... or, indeed, any pain ... just a discomforting tightness. Certainly I am not taking any medication for such.

I have of late - and I DO know why - become anxious (something I'm good at) that I might well have led myself (well, my right arm) down the RIBP garden pathway by virtue of those two radiation bouts on my left and right palms.

You know so, so very much better than me. Am I being fanciful? I will I promise understand completely if you tell me I am being so. Comparatively speaking I had so little radiation. (I was scheduled to have two segments of 15gy each on both hands, i.e., a total of 30yg on each)

You may be howling. If so, I suppose that is no bad thing.

In ANY event bless you for your kind understanding ... I am in awe at your courage - truly I am - and the largess you continue to bestow on an ever burgeoning many.

Bless you for ALL.

Meunier

Dear Binney,

Much, much thanks for yours. It was truly appreciated.

I would just like to say that I have now touched base with a leading radiology oncologist, one Karol Sikora, and he kindly wrote back to me in reference to the matter itemised above stating:

"I should preface my response by saying don't panic!

The DD radiotherapy simply can't cause brachial plexopathy. It's too low a dose anyway and the scattered radiation received under the collar bone will have been negligible."

Hopefully this information may be of interest/value to anyone else in a similar situation.

Bless you for ALL.

Cheers, Meunier