radiation-induced brachial plexopathy
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ronimom, glad the mri was good news. Have a good weekend (((((((((( everyone )))))))))))))))))
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Ronimom, I love good news! So glad your results are in and NEGATIVE!
Celebrate!
Hugs,
Binney0 -
I have had lymphodema for a year and a half. I believe my alternative treatments of daily hyperthermia and daily lowdose radiation contributed to my frozen sholder and le. My physical therapist just shared with me that many of the things thought to heal skin actually exacerbate and prevent wound from healing. AloeVera - prevents wound healing. This seminar recommends A&D ointment found in baby department of drugstores. I tried it tonight as adjunct to the hydroperoxide gel under my armpit and it feels good. FYI, ladies, I wish I had started using this on my skin during treatment - soothing and healing. The flexitouch is helping with swelling and blue fingers. Thanks to all your help, I realize I can't wear my sleeve 24-7.
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Is the main ingredient in A&D zinc oxide? I know it was recommended for diaper rash years ago. And it is good for acne zits. I like vitamin E,- puncture the capsule and squeeze on wounds and skin. It is greasy and will stain fabric and not for open wounds.
While we are on the topic of lotion -- has anyone read about paraben in cosmetics and lotions? The only lotion I have found so far is Aveeno. If I remember correctly, most breast cancer tumors have been found to contain paraben and it is in most cosmetics. The controversy is whether it is absorbed through the skin or not. I opt to not use anything with it in. My onco has no comment.
And I was told to NOT use any anti perspirant with aluminum ingredients. This was by the surgeon, medical onco and radiation onco. So, back to the stinky armpits... they are healthier??
Please don't take me too seriously. I try to find some humor in each day and do not mean to offend or make light of anyone's problems or concerns. HUGS, Nancy
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leftyAQKAnancy,
Stinky armpits are not an option here in the USofA! Try Tom's deodorant. You can find it in health food type stores. It works for me!!!
Keep well,
Ronimom
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I was teasing about stinky armpits -- Tom's is good and/or cornstarch if wearing a white top.
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I have heard there is a new study out that radiation only adds 1% to the survival rate... Hardly seems worth it for me, since I am 62, 63 on Saturday. Decisions, decisions... what to do???
The chemo zapped my tumor and I am wondering where to draw the line on quality and quantity of life?
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Does anyone know where the results of this study can be found?
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one of the gals on another thread said it was out of Baltimore - I don't know any other details. Have appt w/onco on 29th and she is a professor and gonna ask what she knows.
As I find more info, I will post.
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Hi Everyone!
Haven't been on the site for a while and notice that there are a couple of newcomers. Yeah right, another club you didn't want to be a member of.....I was reading some of your recent posts and have never heard that radiation only improves 1% survival rate. I am interested to read any information regarding that. Yes...this LE/BP thing is really tough and I wish that there was some magic out there but so far, I haven't found it. I know the Lyrica has helped tremendously with the nerve pain and the combination Lyrica and Zoloft has been very helpful as well. No weight gain with Lyrica but if I have my "druthers", I would definitely go up a size than have constant nerve pain. I think the stretching exercises help somewhat. I thought ten years ago when I was finished with my treatment that I would be able to get back to normal. After a year, the LE started. I don't think I took it as seriously as I should have, being careless about wearing my sleeve like I should have and not wearing anything at night until I was much worse. So my advice to anyone who has recently been diagnosed LE...pay attention and manage it. Please don't wait until your armis so big that you can't fit into clothes because of the girth of the affected arm. Now, of course I pay attention but I am at a level 3 and I don't it ever goes back to looking normal or even close to it. Then the BP started a little over a year ago and who would ever guessed that I would be double wwhammied! I had never heard of it. It is hard to not be angry that no one warned me about the possibility. but, like Erica says....the lucky 2%. Why can't I be the 2% that wins the lottery?? Anyway, I thought I would say "hi" and introduce myself to the newbies and will try and post more often.
Your partner in crime...
Shari
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I'm new to this site and very glad I found you. I have RIBP and Lymphedema--aftereffects from a mastectomy I had over thirty years ago. Little by little over the last fifteen years I have lost the use of my left hand where there is now no finger mobility or grip whatsoever. I feel fortunate in that I am right handed; however, I do have a grooming problem I am hoping some of you may have ideas to help me deal with. It's how to shave my right underarm area. I use my right hand to do this but it is very awkward and doesn't do a very good job. My second question concerns a treatment center I recently learned about--the Cleveland Functional Electrical Stimulation Center--that has shown good results working with people with spinal cord injuries and stroke injuries. Have any of you had experience with this facility or know if their treatment approaches have application to those whose functioning has been impaired due to RIBP? Thanks in advance.Alice0
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Hi Alice,
I am wonderfng if you had radiation along with your mastectomy. I thought that it was the radiation that caused RIBP. I have a friend right now that is complaining of symtoms of BP but since she had mastectomy 30 years ago without radiation that it couldn't be that. am interested to know. After my chemo, the underarm shaving was a nonissue as nothing grows there anymore so maybe someone else has the solution for you. Keep looking! As far as the Stimulation, I did try a little bit when my BP first manifested but it didn't do anything to help. How serious is your lymphedema? If you are like me, I have both and both are a pain in the ___. Welcome aboard and hope the site will be helpful for you in the future!
Shari
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Hello Shari,
Yes, I had six weeks of radiation treatments along with a year of chemotherapy and my BP is attributed to the radiation. You know I'm not sure of the official staging of my lymphedema, but it has certainly worsened over the years as my arm is heavy and puffier and hard to move around so I use it less and less and expect that's not such a good thing. I'm never sure what is caused by the Lymphe. and what is caused by the BP. I have never worn a sleeve. My worry over the years has been recurrent bouts of cellulitis that occur a couple of times a year, knock me for a loop, but are responsive, thankfully, to Keflex that I always keep on hand. After reading these postings it has occurred to me that perhaps I should exercise the arm more. Presently I do only limited exercises stretching a band tied to a door knob as suggested by an OT I once saw. I was hoping the FES might be an option to improve functioning. I'm sorry it wasn't helpful to you. Did you go to that Cleveland FES clinic? Thanks for responding to my posting.
Alice
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Hi Alicenh,
Have you seen a physical therapist who specializes in lymphedema? It sounds like you need some help. Wearing a sleeve and glove ain't pretty, but it is important and will probably feel supportive. It took me a while to find the right therapist. You need someone who will do manual lymph drainage and teach you how to do it for yourself. You don't want it to get worse. LE is nasty and creeps up ever so slowly.
Good luck and keep ahead of it!
Ronimom
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I have not had rads, but my onco suggests them, even though I have serious concerns about th long term permanent effects. Heart, Lungs, skin damage, RIBP, LE, etc.
May I be so bold to ask if you had to do it over, would you still have the radiation treatments? I survived chemo with a total destruction of my tumor, then had lump and SNB with no node involvement. I am 63, a widow, live alone and wonder how do I weigh the quality versus quantity of life issue. This has kept me awake many nights as I research statistics, read of your permanent limitations, and I cannot help but worry what is the best thing for me.
Thanks in advance for any comments. God Bless, Nancy
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Dear Nancy,
I wish I had an unequivocal answer to your question as to whether I would choose radiation again. I'm told by some that radiation treatments are given differently today and that reduces the chances of adverse consequences. Also, the risks supposedly depend on where the radiation is given. I would ask a radiation oncologist these questions and then get a second opinion; maybe a third from another oncologist who isn't wedded to radiation by specialty. I'd also ask them to cite the statistical benefits. For all I know the treatments may have helped save my life. Of course it may be that they were totally unnecessary or maybe just harmful. I will say that my lymphe. has not been a particular hardship over many of the years since my surgery; and, while disabling, I find the RIBP more an annoyance than traumatic. However, as I said, I have been fortunate that the problems have not been on my dominant side. That makes a hugh difference and I admire greatly from the stories I have read about how many of you are adapting when the involvement is with your dominant side. I wish you well, Nancy, in your search for a treatment path. Best Wishes, Alice
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well, hel-lo alice!
you are the first one i know just like me. i am also 30 years past lumpectomy, with the 6 weeks of radiation, plus a "boost," which i probably needed like a hole in the head. then, maybe 10 years ago the bp must have started, so slowly and subtley that it is really hard to pinpoint when it started. it took years of jumping around to doctors until they finally had to admit....grudgingly....that it really was bp. they don't like to diagnose something that happened on their watch and that they cannot fix.
unlike you, however, i was unlucky enough to have it in my right hand and arm, and i am right handed. also, unlike you, i lost all the hair under BOTH armpits! i always said that the other just shed its hair in sympathy. so, i haven't had an armpit problem for at .least 25 years.
and then, about a year and a half ago, the le struck, very suddenly, on a plane trip. i didn't even know what it was. i thought you could only get le if you had too many nodes removed. no one, including the rad onc i was seeing all those years, my internist, nor my various pts ever said a word or warned me in any way. that's how i know the bp can sometimes be the cause of the le.
again, unlike you, my le is fairly mild and under pretty good control, and i consider it an annoyance, adding insult to injury. but the bp has altered my life. besides being noticeably ugly, i really resent not being able to shake hands or applaud. i have only about 10% movement in it and i expect that that too will disappear.
and nancy, i just want to say to you that i do believe they have changed the way they do radiation today. i cannot possibly tell you if i would make the same decision today, because for all i know, maybe it did save my life. and i had no nodal involvement either and did not have chemo. and i never heard that 1 percent thing either.
i think alice's advice to get some other opinions is excellent. don't let yourself be rushed or bullied into a decision. there is so much more info out there today.
i wish you the very best of luck, and do stay in touch
barbara-
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I am half way through rads.Hate it. Find them more stressful than chemo. Wish I had never signed on. The % change is not worth the stress. Also now I am paranoid of developing LE.Think long and hard before you sign on for Radiation.
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Thank you for your comments. I already have nerve damage from the surgeries on my left (dominant) wrist and hand - 30% of normal use of my hand and poor fine motor control. Since I have learned to maximum what I am able to do for the past 28 years, I am not ready to compromise any more. Maybe it is my German, Irish, Scotts heritage that is making me dig my heels in.
My onco said that radiation keeps advancing and burns are rare, but reading the other threads makes me wonder. I have travelled in the past and hope to do more in the future - LE could create more problems that I do not want to have to deal with. And RIBP... it does not fit in my plan for recovery and moving forward to a new normal, if that makes a lot of sense.
I keep praying for an answer and will make another consultation appointment to discuss it all.
Thanks again, HUGS, Nancy
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Hello, all, and welcome, Alice!
Yikes, an armpit issue! I'm trying to think of a way to add a handle to my electric razor to give it a longer reach -- hmmm...
Nancy, I'll be praying with you for a peaceful answer. It's so hard to make these choices when the possibility of regrets hangs over your head either way. Aaaaugh!
Like you, mumayan, I found the rads far more difficult than chemo. Actually made myself a little chart with boxes on it for each treatment, then went out and bought cheery stickers I could put on my chart for every day I completed. I felt like a 4-year-old, having to reward myself with stickers! On the last day of treatment by rads onc couldn't stop telling me, "I never thought you'd stick it out!" Hmmm. Not a bit courageous
...still, I'm glad I did it. The peace of mind has proven to be valuable to me.Ronimom, I couldn't agree more: "LE is nasty"!
I hope Barbaraellen and Sharz won't mind if I tell you all that the three of us met last weekend in Phoenix and spent a delightful couple of days together. Sooooo neat to be able to talk and share and ask questions and even make plans. We thought about all the rest of you, wished you were with us in person, and I'd really like to make a quick summary of some of the ground we covered so you can join the discussion. Barbaraellen and Sharz, please correct me if I'm off base with any of it, and make any additions I've left out. I took a few notes, but mostly was too busy yakking to keep good ones, so I'm going a lot on memory here, and the brain is a sieve!
1. Pain is a very serious problem and is not being adequately addressed. Just like with LE, no one doctor "owns" or takes responsibility for RIBP management or checks on it consistently -- or even at all. SO we would like make doctors aware of RIBP and its diagnosis and treatment options, and their role in supporting, directing patients to proper resources, and controlling pain.
2. We're understanding from a couple of BP doctors that progression may be slowed by daily stretching and exercising of the arm and shoulder. BUT no one can suggest ways to exercise when control of the arm has been lost. Using the other hand has limitations, especially with the stretching. Therapists seem to be stymied by the complexity of dealing with pain, paralysis and lymphedema all at the same time. SO with the help of some willing and knowledgeable professionals, we would like to develop some exercise interventions and make that information available to other RIBPers and to therapists.
3. These same BP doctors also acknowledge that it's physiologically possible that the use of the low-level laser could trigger RIBP in someone at risk for it. SO we would like further studies to be done on laser use that would clarify the safety issues.4. There are no guidelines for total RIBP treatment or treatment expectations, SO we would like to generate RIBP information for therapists that will guide them in recommending and carrying out on-going treatment for their patients with RIBP.
5. Because RIBP can lead to subluxation (partial dislocation) of the shoulder, we discussed the possibility that Kinesio taping might provide support for the subluxed shoulder in advancing RIBP. SO we would like to locate professionals who can give us information we can understand about the use of taping to support the shoulder.
6. Because of the psychosocial discomfort associated with swelling, wrapping, garment use, disability, and (as Barbaraellen so vividly puts it) "club-like" hanging arms, we're brain-storming ways to generate public awareness of both LE and BP, in particular as a side-effect of breast cancer treatment. SO, ladies!!! Anybody know how we can all go on Oprah and talk about this?
ALL other suggestion, ideas, brain-storms, or rants cheerfully welcomed -- let's come up with some ways to get RIBP the attention it needs to make sure that treatment is adequate, prevention is possible, and research moves forward for better interventions and hopefully a cure.What thoughts?
If you haven't already, please check out our newly re-arranged RIBP page at StepUp-SpeakOut.org, and let us know your thoughts on making that more helpful too. It's here:
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm
(It's still a work in progress, with a few sections yet to be written but -- you get the idea!)
Be well, all,
BinneyP.S - Our RIBP "sisters" in the UK suggested as a resource a book called "One-Handed in a Two-Handed World" by Tommye-K. Mayer. Anybody read it?
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Thank you for your warm welcomes to this discussion forum. Can I pick your brains with a couple of questions? First, has anyone had any experience with the Cleveland Functional Electrical Stimulation Center? I was sent a recent article touting its good results working with people with spinal cord injuries and stroke injuries. Have any of you had experience with this facility or know if their treatment approaches have application to those whose functioning has been impaired due to RIBP? Second question: what is the name and purchase information of the exercise video someone on this list spoke favorably about? Thanks in advance for your help.
Alice
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Hi, Alice,
Haven't heard anything about Electrical Stimulation, but Sharz was in Cincinnati lately and perhaps she's heard of it. And Barbaraellen has heard of everything
, since she seems to have left no stone unturned, so I hope she'll be along soon. Does the article mention RIBP?Is the video you're referring to the Lebed method? If so, it's here:
http://www.lebedmethod.com/index.cfm?page=results&category=2
Most of us on the exercise thread below are using the DVD rather than the video, but either is good. I like the DVD because it's cheerier, and it's easily divided into sections, so I can do them at various times throughout the day.
Hope that helps!
Be well,
Binney0 -
Wow, Alicen!
I just went and looked up the Cleveland center on the web and it looks really interesting. I wonder if they have any trials in the planning stages for RIBP. They have a "contact us" page -- have you contacted them?
Looking forward to hearing more about this,
Binney0 -
hi, girls,
binney, i hate to disappoint you, but i never heard of the fes center in cleveland, so you will have to demote me. i have no longer heard of everything. but, i did look it up, and it does sound a little scary, if interesting. i would have liked it better if the words 'radiation, lymphedema, or breast cancer' had shown up somewhere. we are not stroke or spinal cord injury patients, and i worry about what electrical stimulation may do to our joint conditions. some of those side effects could certainly damage the skin we pamper so carefully, so i also await the answer. who sent out the contact us, binney or alice? i was always suspicious of that emg test, annoying all those little lymph cells just under the surface, so i would just love to hear from some woman who had lymphedema who went through the protocol at the fes center.
still, i hope for the best, and binney, you take care of yourself. we all need you, fearless leader!
barbara-
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Hello All,
Well, cross the Cleveland FES Clinic off as a possible resource. I finally got a reply from them to my email of a couple of weeks ago: Here's the response:
"Our program focuses on restoring function after paralysis caused by spinal cord injury. Unfortunately, the type of paralysis you are experiencing is different from that caused by spinal cord injury and is not likely to respond to our methods of restoring function. ..."
Onward,
Alice
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barbaraelle -
I'm curious about what you said about the bp/le starting up 20 years after your rads. I had a lumpectomy w/ rads 7 years ago. I've had no problems w/ the lymphedema or anything, but I do have severe muscle spasms (pectoral) if I just move in the wrong direction. Sometimes I get them just because, sometimes laughing sets it off. Other days I'm fine, but this is a problem that isn't going away. My onc told me it's from the rads.
Does any of this sound familiar?
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Well, Alicen, rats!
That's what I was afraid of.
Seems like RIBP is different from absolutely everything, at least in terms of possibilities for treatment. Did they suggest what the specific differences were that mattered in this case? Thanks for doing the research, and for sharing it with us. Barbaraellen, it looks like your status is restored
-- you've still already heard of everything that had any possibility of working for RIBP. No demotions!One of these days something is actually going to click...
Be well!
Binney0 -
Hi all!
I guess I am demoted too since I can't think of anything new and brilliant! For those of us with severe LE and BP...double whammie. I did have the good fortune of finding this site and then meeting with Binney and BarbaraEllen for a couple of days a few weeks ago! What a blessing to meet people through this helpful site and the best part is I like them as well in person as I thought I would!
What has helped me mostly with the BP is the drug Lyrica. It has kept the spasms to a minimum and unless I overuse my hand, they stay relatively quiet. The paresthesias are better as well but sometimes they really get to me.
Any research that is shared is so greatly appreciated by us. Binney is more knowledgeable than any doctor or Pt that I have come in contact with and as Binney says Barbara has left no stone unturned. I have personally travelled cross country to see a neurologusist that was supposed to be a specialist in this area....well BS, same ole, same ole! I have also seen a neuro guy at UCLA and tested with the EMG. He said classic case of BP and keep taking Lyrica. Also, Zoloft has helped too. Nothing they can do other than that. So....we need to get the word out to the clinicians and researchers that we need major help with these devastating. both physical and psycological side effects of post treatment for BC. As thankful as we are to be alive, we are frustrated with the fact that no one can really help us (except the support of each other). So keep coming back to the site and Oprah, if you are out there somewhere, we really need you! When Oprah does her Oct. breast cancer shows, we need that opportunity to be heard. Our goal is to educate and make people aware. We are lucky to have found this site but there are many more sufferers out there that have no one to turn to.
Happy Valentines Day to all!
(((((H))
Shari
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Even though I do not have ribp or LE.. yet. I send good vibes and good thoughts for a pain free day and week end. I know I am fortunate to be alive, no node involvement, no evidence of carcinoma in the pathology, and Herceptin for my Her 2 +++. But, it is a continuous uphill battle each day to put on the happy mood and go off as if things were somewhat "normal".. Normal is only a setting on the clothes dryer and I am not gonna fit inside MY clothes dryer any time soon... HUGS, Nancy
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hi, desdemona,
the only discomfort i had 7 years out of surg/rad, was in my ribs on the radiated side. they hurt when i laughed or coughed, and it was impossible to sit up in bed. it sounds like your pain does come from the rad, even though it is in a different place from mine. i can tell you that it did disappear slowly, but i do not remember exactly when it was gone. there was a time when i actually had no pain, no plexopathy, and no lymphedema...........but as you see, it didn't last.
there is no reason for you to start worrying that this might happen to you too because they have changed the way they do the radiation. i think they are much more aware of the danger of overlapping fields, but just stay aware anyway. if you find something amiss early enough you may be able to head it off before it does damage. you're already ahead because your doc agrees it's from the rads. stay well and stay lucky.
barbara-
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