radiation-induced brachial plexopathy
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I've not been active on breastcancer.org for a long time but saw that a few more people were writing in about use of Vit E/pentoxyfylline. When I was initially diagnosed with RIBP I had fairly rapid progression of hand weakness. I did a 6 month course of VitE/Pentoxyfylline and the motor damage stopped. I do have ongoing 8/10 burning pain in my hand and some fine motor weakness but overall the progression of the motor damage has stopped. I only did the 6 months because the initial study in mice that I read and other studies on radiation fibrosis had used a 6 month course. Not sure if there is any consistent data about long term vs sh
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thanks for your info .. I have just started to use them so will see how I go ..
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Erica, it's wonderful to "see" you again. Would you be able to share what strategies you use to cope with that much pain on a constant basis? That's such a burden. I so wish there were better answers to this dilemma--aaaargh!
Gentle hugs,
Binney0 -
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
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Hi Erica... I wonder if the time needing to be on the medications depends on the abount of damage?? I note that others stay on them indefinatly.. How did you find out about these medications? ... I found out from another patient who found info on the internet!!! there seems to be few Drs who know about them ir who are prescribing them ... Thanks for starting this thread it has some goid info on it .. Helen
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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?
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Hi Marga.. Looking at the above comments some people have had success with the Vit E and Pentoxifyline.. I have started Dr Delanians protocol but it maybe is to late for me as I am in a wheelchair.. Pelvic radiation... She says though that it may help with pain, lymphedema and any bowel or bladder issues.. It really is just me giving it a go.. My body ..my life .. I should not have to argue with a dr to be allowed to try.. My Radiation Oncologist is very supportive of me doing this he feels it is worth a try.. I am just sad and Angry not to have been given the chance to try this two years ago when there was not so much damage.. Why do the doctors not know of these things and why do we have to print up articles from the internet to show them!!! I had a LNT three years ago.. It has helped my Lymphedema but not cured it .. Did not help the RILP.. It seems like these medications work for some people and not for others.. Maybe that is due to the level of radiation damage to the area.. I wish that our doctor could see that our quality of life is effected and take care if us when the late stage side effects hit.... Using these medications has ro be an individual decision.. I also believe you need to take them for up to a year to see real progress and maybe even longer.. I will keep you posted on how I go plus another lady I know who has started on them .. Helen
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PS marga.. I have not heard of the of the stem cell treatment ar this stage ..
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Helensamia, I am sorry if I offended you. I mean that. i was probably having a bad day, after arguing with doctors. I hope you get better and better, with all you are pursuing, and I am really glad that you come here and tell us how you are. Big hug
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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 :
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O bless you!
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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.
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Hi LindaKR. i have been having the same thing. i haven't been formally diagnosed with it, I am getting leery of telling the docs anything, because then the add it to my page of co~morbidities, and that page is almost full. i know for many of those things, a few were diagnosed with various tests, but many were diagnosed with just the words I told them. I believe it's called 'complaints', so I got leery of 'complaining'. That's just me though. I do hope its nothing, just that you have recovered sufficiently, that you are a speedy gonzalez, and maybe just slow down a little!
Seriously, I do hope you get to the bottom of it soon, as from what I have read, it's better to mitigate the damage as soon as possible.
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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
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Linda, as Helen mentioned, a diagnosis depends on eliminating other possibilities, but it also relies heavily on your treatment history, overlapping rads fields in particular. Here's the StepUp-SpeakOut page on breast cancer-related RIPB:
http://www.stepup-speakout.org/Radiation_Induced_B...
Do take courage in hand and get in contact with your medical team about getting to the bottom of this. By way of encouragement, there are other less troublesome conditions that could be producing your symptoms, and we'll all be cheering for one of those. Please do keep us posted.
Gentle hugs,
Binney0 -
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
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Hi Binney4! Just to ask you if you know about a surgery to remove scar tissue around the nerves, because last week I went to see a brachial plexus specialist (because my bachial plexopathy symptoms are getting worst every day) and he told me that with the radiation I got on 1997 for breast cancer scar tissue was formed around the plexus nerves, so maybe if he removes it out my symptoms would be less, I hope some of this days they can find something to let us feel better. God bless everybody!!
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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,
Binney0 -
Binney, yes I explained to him that my brachial plexopathy was of radiation. Initially I sought a lot of help, my symptoms are bad fortunately I don have pain, but I feel tingling numbness cramps jumping inside my arm. At the beginning I went to see a radiologist, orthopedist a hand surgeon who told me that was carpal tunnel I went through a surgery for that, did not helped me my oncologist recommended me to go to Houston to get a lymph node transfer (for lymphedema), but dr Nguyen told me that my lymphedema wasn't that bad, and it will not help me in the problem with RIBP, so I didn't get that surgery, then I took hyperbaric oxygen therapy for 40 days, didn't help, my hand is almost paralyzed, so I thing this is my last hope, I am going to see the dr in 2 weeks, so I will ask him a lot of questions. I'll keep you informed!!
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Good luck, Marga!! I hope you get some good answers.
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good luck Marga... Ask if he has other patients who have had surgery for RIBP as the scaring and fibrosis after many years is quite severe and different to other causes of RIBP.. I was told by my radiation oncologist that Oxygen therapy HBO would not work ... That the only time it may help,is immediatly after radiation but of course we are not told there is a possibility of this problem so we do not do it then!!! So far I have found no answers so will be interested to hear what your Dr says..
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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...
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so sorry Colleen that you have such problems and yes for some of us it is the gift that keeps on giving ... Somehow we muddle through ..
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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,
Binney0 -
Physical pain will never be controlled in this "everyone is an addict" world. Yes, I have had lots of OT & PT. Thanks for your support! Much love to you:)
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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.
Meunier0 -
Meunier, that's a really interesting question. And since I know no one who has ever had their hand zapped, I don't think I've ever even thought about it. RIBP is caused by radiation damage to the brachial plexus, which is a network of nerves that can be radiated during breast cancer treatment. Seems likely similar damage could be done to the nerves in the hand, but I'm not sure what the symptoms of that might be. Obviously the radiation doctor isn't someone you trust, but do you have a neurologist you can ask about this? It's a perfectly legitimate concern, and well worth researching, so please don't hesitate to ask your doctors about it out of embarrassment.
Since you're in the UK, I'd sure see if you can connect with the R.A.G.E. group (Radiation Action Group Exposure)--they might have some answers for you, as their concerns go beyond RIBP and cover all manner of radiation damage. They're here:
No one here at breastcancer.org will be howling, I can assure you. We all get it about worry and panic--been there, done that. Do look into this further with your medical team, and please let us know what you discover.
Be well!
Binney0 -
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
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Great news, Meunier--thanks for letting us know. Whew!
Be well,
Binny0 -
I am on my third time with breast cancer...first time it was lobular, I had 2 lumpectomies and radiation, then tamoxifen for 2 yrs only (started messing with my liver) then 5 yrs later I had a lump under my arm removed...turned out to be an aggressive form of cancer in the breast accessory tissue, had double mastectomy with immediate reconstruction, followed by chemo and radiation, they also removed ALL lymphnodes in my right arm, I never really suffered from lymphedema much, a couple of episodes in the hot summer...Last October My right arm began hurting and was swollen, had u/s to see if it was a blood clot...that was negative so oncologist ordered cat scan of chest neck clavicle areas...turns out cancer was back!!! this time a tumor in my brachial plexis area imbedded in all the scar tissue I have!! It's pressing on my arm thus the lymphadema, swelling and pain...oncologist called it metastatic breast cancer...said it was treatable but not curable... started me on Taxol...she says I have to be on it for the REST OF MY LIFE!!! Never heard of such a thing!!! I can't have any more radiation to that area...it's inoperable becuz it is deep and near my main aorta...my ONLY option is chemo...I now am suffering with neuropathy in fingers and toes, I have terrible bone pain and a host of other side effects from the chemo...My oncologist prescribed Lyrica, have been on for 3-4 weeks and haven't noticed anything...she has offered me percocet and vicodin but I don't want those addicting drugs and plus they make me nauseous and shaky!! Friends and family told me I should ask for a medical marijuana card...I have a high threshold for pain, took only motrin after ALL my surgeries, including mastectomies! I did try pot and it really helped!!! However my oncologist says she does not prescribe this...I'm in alot of pain with my legs back arms and rt breast area and it feels like my arm is in a vice! Wondered what your thoughts are and would appreciate any advice....I never heard of chemo (infusion) for life...have any of you?? Thankyou for listening!!! Paula
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