Topic: radiation-induced brachial plexopathy

Feb 4, 2008 09:09 PM amandaj wrote:

Mar 9, 2008 04:53 PM velcro wrote:

I have been experiencing tingling and a strange sense of movement in my torso, leg and arm.  It started three weeks into radiation and everyone felt it was unrelated to the treatment.  It is now four months since my last radiation session and the sensations have increased.  I feel likethe left side of my body is shaking and "nervous."  I have been to a neurologist and had CAT scans, MRI and EEG as well as blood work.  Everything comes back fine but my l left side still feels as though there is an electrical current running through.  I am back to the radiation oncologist this week for yet another appointment to see if there are any answers.

I am also having trouble finding information and everything I read indicates that I would not have this reaction so quickly.

I am sorry to hear about your frustration.  Hang in!

Mar 25, 2008 09:45 PM sharjo wrote:

I'm glad to find this site.  I have had radiation induced brachial plexopathy since 1997.  I have not found anyone that had this condition until now.  I have adapted fairly well but, it's been difficult doing things with only one hand.  I would like to chat with anyone who has been living with brachial plexus injury.

Apr 7, 2008 12:16 PM bill3144 wrote:

i have radiation induced plexopathy that was finally diagnosed only after telling the doctors what my problem was. i am male and was treated for base of tongue cancer in 2004. I started having my first symptoms in 2007. I first developed what i thought was carpal tunnel in my right hand. Then I started having a strange burning fluttery feeling in my left shoulder. The symptoms have progressed to involve both hands and both shoulders with a numbness running down both arms to my hands.I have extreme weakness in my arms that seems to progress daily. My radiation oncologist acts like i couldn't have caused this because I didn't radiate that low. The problem was caused by concurrent chemo ( cisplatin & taxetere) and 77 Rad of radiation. I dont get a fuzzy feeling when they say this is rare. Out of this treatment I have Chronic dry mouth, tongue neuopathy (chronic burning of tongue) and altered taste (salty). I have not been able to eat solid food since treatment and I have Dysautonomia that causes wild swinges in my blood pressure. Before my treatment I was an active mountain biker and in 2005 was able to ride again until my delayed side effects kicked in. Now I feel blessed to be able to walk my dog 3 times a day. Until my Brachial Plexopathy can along I could function on a limited basis. Now I am so weak I have difficulty carrying my own arms around. Because of numbness in my hands task that used to be easy is now close to impossible. Typing this comment requires careful pecking because I now fat finger all keyboard work.   

Jul 2, 2008 09:04 PM jwd wrote:

Erica35 and bill3144

I can sympothise with both of you in that I always seem to fall into that small percentage (most of the problems below) and have had base of tongue cancer. I am a 73 year old male in good health until treatment.  My radiation-induced plexopathy began a couple of years after completion of treatment in January '04 and was only a mild numbness and tingling in my thumbs and first two fingers.  It has slowly increased in severity and it is equal in both hands.  Buttons have become difficult and cleaning my hard contacts is a problem as I often drop them. The Internet indicates that this is common with radiation to the upper chest, but unfortunately, most articles are very technical.  My upper chest was red following treatment.

 I have dry mouth, consistant flem in my throat, Trismus (reduced mouth opening), almost no sense of taste and zero taste for sweet.  Nothing tastes good or even OK and I no longer eat sweets or popcorn as they do not taste good.  Everything has a neutral to bad taste and spices all seem to fall into the bad area.  Anything with grease causes my tongue to feel like it is coated with something slimy,  a very BAD feeling.  I eat only to survive and losing weight is a constant problem.  I also have the Dysautonomia mentioned by bill144.  I take Midodrine each morning (unless my BP is above 150) to raise the pressure and if it gets too high (above 170), I take Toporol to lower it.  Last month I had a high BP of 184/92 and a low of 58/35.  Sound familiar bill?

Jul 3, 2008 09:53 PM burlenek wrote:

I'm not sure if I have radiation-induced brachial plexopathy, but I have a definite clumsiness of the hand on the side that I had radiation to the breast, axilla and supraclavicular area 2-1/2 years ago.  Sometimes my left hand is uncoordinated, I drop things.  Sometimes my arm is a little numb.  My shoulder is always very stiff. Physical therapy didn't help much.

Does anyone have these symptoms?  My rad onc denies that it is from the radiation therapy, but I never had these symptoms before.

Jul 14, 2008 01:00 PM Sharalyn wrote:

Sharjo...I am so glad to finally find someone who is dealing with this problem.  I had treatment with radiation/chemo for BC over 9 years ago.  Have been clean with the BC ever since.  7 months ago, I started with this problem of hand of numbness, weakness, pain, unable to use last two fingers...lots of tingling and horrible feeling.  They have run many tests which showed radiation plexopathy but no tumor (thank God).  I am in Lyerica which seems to help some but I gotta tell ya, I am miserable with this plus I have lymphedema of that arm as well.  I hope I hear from you and maybe other people "in the same boat" soon.

Jul 14, 2008 01:28 PM pinoideae wrote:

Erica, here is some research which is shown to improve this diagnosis.

1: Chin J Traumatol. 2002 Dec;5(6):329-32. Links

Jul 15, 2008 08:53 AM barbaraellen wrote:

hi, erica and everyone,

am i ever happy to have found you all.  i developed brachial plexopathy 25 years after radiation therapy from breast cancer.  i had no nodal involvement so i never had chemo.  that's how i know it comes from radiation, not drugs.

i have tried to submit this several times, so if this is redundant, please forgive my clumsiness with this new-fangled machine.  please let me hear from you and let me know how you cope with this.

Jul 15, 2008 10:01 AM barbaraellen wrote:

hi, erica and everyone,

my friend from the lymphedema network found this particular topic for me, and am i ever glad to find all of you.  i can barely manage email or i might have zeroed in here long before.  already we have raised that 'less than 2%' line we have all heard about developing brachial plexopathy after radiation.  i am convinced that these radiation oncologists send a newsletter around, warning them all to deny that these symptoms happened on their watch.  mine too. 

i had breast cancer just about 30 years ago, followed by radiation therapy just as all of you had.  i did not have nodal involvement, so i did not have chemo or any other drugs.  that's how i know the plexopathy came from the radiation alone.

within the first year my upper chest became disfigured and discolored, so that was the end of bathing suits, necklaces, or any neckline but a high one.  at 44, one is not quite ready for such an assault on body image. but, okay, i am supposed to be grateful to be alive.  about 5 years ago, my plexopathy problems began, but my rad onc assured me that it 'couldn't' be the radiation. it took a neurologist to properly diagnose it. 

adding insult to injury, a year ago i took a plane trip and my arm blew up like a leg of lamb.  no one, in all that time, ever warned me about lymphedema.  i had no idea i was at risk for it once i had passed that important first year.  when you look up lymphedema, the first thing it says is, you are always at risk if you have had surgery or radiation, and you should never fly without compression on your arm.

so now i have 2 permanent, debilitating, and extremely unattractive conditions, neither of which might have happened if i had been forewarned.  i suppose i should still be grateful, but i really would have enjoyed being able to lift my 2 little granddaughters, 1 and 2, and put pony tails in their hair and make cookies for them.  but like you, i can't even dress myself very well.  please let me know how you all are coping with this thing, and please know you are not alone.    

Jul 15, 2008 10:53 AM Sharalyn wrote:

Was I ever glad to see your post this morning.  I have been dealing with the lymphedema for quite sometime now but the brachial plexopathy just started in December of last year and has just about debilitated my right hand (am right handed) and the numbness and nerve paiin is driving me nuts!  The worst part is no one and I mean no one seems to be able to help me.  They just kind of shrug their shoulders.  I am on Lyrica and that helps some with the nerve jumping in my hand.  I am relieved to find others with this problem.  Someone told me about a doctor in NJ but when I called and left message got no call back. There has got to be some help out there but where?? I can't believe that with all of us out there that someone doesn't specialize in this or that there isn't more research going on....

Jul 16, 2008 10:49 AM Sharalyn wrote:

Jul 22, 2008 11:24 PM barbaraellen wrote:

hi, everyone!

there is no way i forgot you guys; this miserable chunk of machinery conked out on me last week.  had to wait for the computer-gods to show up today.  let's hope this lasts for more than a day. 

sharz9, i am shocked.  of COURSE you are right-handed;  it is always the dominant hand that goes out, didn't they tell you that in "nightmare one"?  i am amazed that you can use upper case letters.  i cannot use my right hand for anything except a wave from the hip.

it is interesting that you had the lymphedema before the brachial plexopathy.  mine was just the opposite.  i really believe that each condition is responsible for the other.  i certainly share your frustration with the medical community.  i just came back from my neurologist, and the best he could tell me was that i was deteriorating LESS quickly, due to my therapy.  how's that for a black cloud?  he has no clue what i should do. 

he is a really good guy, with the soul of a researcher, but he doesn't know what to tell me except that i should continue therapy to try to keep whatever i have.  just from this site, i have a hard time believing that this is such a rare condition.  what about all the people who are even worse with computers than i am?  i bet there are a lot more out there, all alone.

i would love to find someone out there who can help too, but i don't know where to look.  i found the national brachial plexopathy network...nbpn...but i was the only one out of hundreds who had had radiation damage.  most of them were injured from accidents, motorcycle and auto, and were most interested in discussing surgeons and pain medications.  i do not have serious pain  (just    numbness and paralysis), so i did not have a lot in common with them.  then i found the wonderful lymphedema network, but none of them had brachial plexopathy.  so, we may really be  strange birds.  but it is a comfort to know that we are not alone.

oh, by the way,you can all call me just barbara....seems someone else grabbed that from me earlier, so now i had to resurrect my middle name just to find you all.  it was worth it.

take care, and share. 

Jul 23, 2008 11:42 AM Binney4 wrote:

Hello, Barbara!

Computers! Can't live without 'em, but sure can't live with 'em either. Hope yours continues to cooperate!

I'm wondering what therapy you're talking about that your doctor says is slowing the deterioration (geesh! thanks a lot, doc!) Do you mean your lymphedema therapy? And if so could you describe what the therapist is doing, exactly, that seems to be helping? Anything that helps would be wonderful to know about.

Hope today's bright and beautiful where you are!

Binney 

Jul 23, 2008 12:09 PM SherriG wrote:

Hi all.  I just had to jump in here and let you know what I've discovered over the last few weeks.  I have been out of treatment that included 30 rads to overlapping fields for 3 1/2 years.  I have always had pain and tightness in the area (right chest wall and axilla) but it has been getting worse over the last 6 months or so.  I was recently diagnosed with RIF (radiation induced fibrosis).  Apparently this is very common in women who have been treated for breast cancer.  Doctors always thought there was nothing that can be done.  However, there is a doc in France that has been studying this condition since 1998 and now the researchers in the US are looking at her treatment plan.  There is actually a clinical tiral going on at the University of Iowa.  I didn't qualify for the study because they are putting women on the treatment IMMEDIATELY after rads.  However, there is much research that says this treatment is working for women who are years out.  I went to my pain doc and she did her own research and she has agreed to try this on me and two of her other patients with this condition.  The good thing is this doesn't just mask the pain but actually heals the damaged tissue.  It is a combination of a drug called Trental and vitamin E.  I have read and read and there are actually good articles on this from JAMA and the Journal of Clinical Oncology.  You ladies might want to goggle this and do some research.

Binney, it also appears that in some cases the LE can laso be reversed!!!!  It almost sounds too good to be true but it might be worth a look. 

Jul 23, 2008 12:57 PM, edited Jul 23, 2008 01:07 PM by barbaraellen

hi there, binney and sherri,

first, binney; no, it was not my le therapy my doc was referring to.  it was the therapy for the plexopathy.  i really think there has been only microscopic 'slowing down' myself; i think he is just trying to keep me from jumping off the deep end.  all i am getting is a brace to wear a few times a day and some hand exercises.  i have the le reasonably under control with a drainage session about once a week, and then wearing a sleeve and a glove during the day.  at night i have a heavy duty sleeve, called the opera sleeve, plus 2 gloves, one on top of the other.  it is a llittle clumsy, but it is better than bandages.  anything is.

sherri, i can sense your excitement over the trental and vitamin e therapy, and i don't want to dampen it, but i have to tell you that i tried that for maybe 6 months or so a few years ago, before i even had the le and the plexopathy was not nearly as bad as it is now.  it did absolutely nothing for me.  it was my radiation onc who recommended it, and even gave me the email of the guy who was doing it.  i sent him my story and asked for advice but i never received a word back.  too busy, i am sure.  all of us less-than-2-percenters were probably swamping him with questions.

i was told by my rad onc that this would probably have worked if i had started the regime as soon as the condition presented itself.  that would have been pretty impossible since it took them years to diagnose it!  you just can't win.

i will try to find out more about it again, but i would be surprised to learn something else.  i would travel to the moon if someone actually figured out how to turn scar tissue and/or fibrosis back to normal tissue again.

but, do let me know what else you hear.  maybe it was just me.  good to hear from you, and stay well, everybody,

barbara- 

Jul 23, 2008 01:41 PM Sharalyn wrote:

Barbara...I was so glad to read your post this morning. I have been looking every day since I posted and wasn't seeing anything new from anyone and so, hence, more discouragement.  I am sorry to hear that anyone else has this to deal with but am relieved that I am not completely alone.  I live in the Los angleses area where there are many accessable medical institutions but I am getting nowhere,  I have been taking Lyrica and that helps with the nerves jumping in my hand and some of the anxiety I was having when this started.  Sometimes I just try and forget about it but that doesn't lst for long because most of my right hand is numb now and tingles constantly.  My arm is so weak that I can barely use it anymore.  I, like you, would travel anywhere if I could find someone to help.  I type mostly with my left hand and can still use my thumb and forefinger on the right.  this is a monster to live with and has dramatically changed my quality of life.  I was treated for BC ten years ago and been dealing with lymphedema for seven.  I was never told or warned about thi stuff in any way.  Am lucky to be healthy every other way.  I turn 62 this year and am grateful that this didn't happen when I was younger,....then I would have really felt cheated!!!  I was doing research myself on the internet but it seems there is not many of us out there and research is scant if at all!  I don't want to sound down and apologize if I am sounding that way.  I really am an "up" fun person and don't want to sound so dreary.  Another thing is shopping has become a "nightmare" of it's own, always looking for long sleeves made of a thin material because where I live the summers are HOT! (So I save a little money cause most the time I don't find anything...tee hee) I do go for PT but now just once a month because insurance only allows 30 visits a year. She tries to break up scar tissue but I don't think it helps much.  I am grateful for connecting with you and love your sense of humor.  That's helped me a lot by keeping that and trying to still have fun in life! Thank God for this site!!!!!  I will be looking for your postings! Be well all!!! Shari

Jul 23, 2008 04:01 PM Binney4 wrote:

Sherri, thanks for your exciting information. I'm so glad you'll have a chance to try this drug regimen, and I hope it works wonders for you. It is interesting about the lymphedema lessening or disappearing. Insofar as it was caused by blockage from fibrosis and not strictly by damage to the lymphatics, that would make sense. What good news that must be for those who have been suffering with it and find themselves relieved of it! Please keep us posted on your experience.

Barbara and Sharz, help me here. I'm trying to understand what, exactly, the brachial plexopathy is -- what the mechanism is. Are you all saying that fibrosis is the culprit, and that breaking down the fibrosis would relieve or at least slow the deterioration? Is Sherri's RIF the same thing as brachial plexopathy?

And if fibrosis is the problem, have any of you tried the Riancorp low-level laser? It's been recently approved for use in lymphedema treatment to break down fibrosis which is cause either by the initial surgery and/or rads, or by the stagnant lymph fluid itself. It's been quite successful in improving both the pain and the blockage of lymph flow, and so in reducing swelling as well. Barbara, you seem to have been "around the block" with just about everything that holds out any hope, so I'm guessing you've already tried it. No help?

Sharz, I'd say this is the perfect setting to sound as frustrated and unhappy as you need to, and no apologies called for.

Thinking of each of you, and sending very gentle (((hugs!))),

Binney 

Jul 24, 2008 11:04 AM Sharalyn wrote:

You won't believe this Binney, but the answer is yes, I have tried the laser therapy last fall, from October through the second week in Dec.  Right after that in Dec. is when my brachial plexopathy started showing symptoms.  It has progressed rapidly.  I was tested with Cat's MRI's and Pet and all showed brachial plexopathy. Needless to say, I was relieved it wasn't something worse but this is no bundle of joy either!  A bummer  as I thought my lymphedema was a curse enough.  It could be coincidence or the laser disturbed a bundle of nerves enough to kick start this disease of 2%.  Who knows? With my experience, I would advise no one to seek laser treatment for lymphedema.   

I don't think all people with fibrosis get BP....but I was diagnosed with RIF soon after my radiation, within a couple of years.  That was easy enough to live with because the lymphedema was a much worse problem for me.  But this new BP is mind boggling! 

I have heard recently that if we progressed more with stem cells that new nerves could be grown but as you probably know isn't being done in this country due to laws.  Now I am going to investigate that possibility in other countries....hopefully not another dead end!  Wish me luck!

 Sending (((H))) back!

Shari  

Jul 24, 2008 12:56 PM Binney4 wrote:

Shari, that's a real cautionary tale, and I really appreciate your sharing it. I'm planning (Lord willing!) on attending the National Lymphedema Network international conference next month -- researchers from all over the world. So not only will I pass your experience on to them, but I'll keep all my antenna out there looking for anything promising from the far corners. I can't tell you how distressing your situation is to me. You're so right -- lymphedema is curse enough, and the BP is beyond beyond.

Oof!

Binney 

Jul 24, 2008 02:46 PM barbaraellen wrote:

LADIES!  YOU ARE SO SHARP AND UP TO THE MINUTE WITH YOUR INFO!  I AM REALLY IMPRESSED.  I WAS ACTUALLY GOING TO TELL YOU ABOUT THE LOW LEVEL LASER STUFF.  THE NLN WAS KICKING IT AROUND FOR A WHILE, RECOMMENDING CAUTION AND RESEARCH.  I CANNOT BELIEVE THE TERRIBLE EXPERIENCE YOU HAD WITH IT, SHARI.  HOW COULD THAT POSSIBLY BE A COOINCIDENCE?  YOU GOTTA TELL THE LYMPHERS OUT THERE.

I ALSO THINK THE SOLUTION MAY LIE IN STEM CELL RESEARCH.  WHENEVER I WANT TO MAKE A DONATION FOR ANYONE, I MAKE IT TO ISRAEL AND SPECIFY THAT I WANT IT USED ONLY FOR THAT.  I ALWAYS GET A NOTE BACK TELLING ME THAT THE CELL GUYS GOT IT, AND THANKS. THANK GOODNESS SOMEBODY'S WORKING ON IT.

THE WAY I UNDERSTAND THE LE/BP CONNECTION IS THAT THE RAD CREATES THE FIBROSIS, THE HARD STUFF.  THAT, BY THE WAY, CAN BE SUCCESSFULLY MASSAGED OUT....SOMETIMES.  HOWEVER, RAD DAMAGE DOES NOT SIT IN ONE SPOT; IT MOVES.  IN SOME PEOPLE IT MOVES FASTER THAN IN OTHERS.  THE BP IS THAT MASS OF RED LINES IN THE SHOULDERS THAT YOU ALWAYS SEE ON THAT BIG CHART IN THE X-ROOM OF A DOC'S OFFICE?  SO IF THE RAD MIGRATES TO THAT AREA AND SWALLOWS UP A NERVE HERE AND THERE, PRETTY SOON YOUR HAND STARTS TO TINGLE.  AS IT CONTINUES, LIKE SLOW-MOVING LAVA AS I PICTURE IT, IT KEEPS DEVOURING NERVES.  SO ONE DAY YOU CAN'T HOLD A PENCIL, OR LIFT A POT, OR THREAD A NEEDLE.  YOUR BRAIN IS SENDING OUT COMMANDS, BUT THE MESSAGE IS BLOCKED BECAUSE THE NERVES CAN'T GET THROUGH.

THEN, AS THE HAND AND THE ARM DO LESS AND LESS, THE LYMPH SYSTEM BECOMES SLUGGISH IN THAT ARM.  THE LYMPH MUST HAVE MOVEMENT TO KEEP FLOWING, SO WHEN IT CAN'T KEEP SWIMMING ALONG HAPPILY, IT GETS BUNCHED UP IN YOUR ARM.  THAT'S WHAT THE LYMPH DRAINAGE MASSAGE DOES; LITERALLY PUSHES THE ACCUMULATED LYMPH ON ITS WAY............UNTIL THE NEXT CROWD SHOWS UP.

I ALWAYS UNDERSTOOD THAT WAS THE SEQUENCE, BUT HOW YOUR LE CAUSED THE BP IS A TOTAL STUNNER TO ME.  I AM STARTING TO BELIEVE THAT THE LASER DONE IT!! 

 SO, ABOUT THIS ARM.  IT USUALLY TINGLES OR FEELS UNCOMFORTABLY NUMB.  IT WANTS TO HANG DOWN ALL THE TIME, BUT THE LE THERAPIST SAYS NO.  TO RAISE TO TABLE HEIGHT I HAVE TO USE THE OTHER HAND.  I ONLY GET PAIN IF I TRY TO MAKE IT DO SOMETHING IT DOESN'T WANT TO DO, LIKE PUTTING A SWEATER ON OVERHEAD, OR TRYING WASH THE OTHER ARM.

I HAVE TO BUY LONG-SLEEVED TOPS TOO, BUT I CANNOT SHOP ALONE.  I HAVE TO DRAG MY HUSBAND WITH ME, SO I CANNOT DO IT AS OFTEN AS I WOULD LIKE.  I ALWAYS HATED SHOPPING ANYWAY, SO LIKE YOU, I AM NOT FINDING MUCH.  SO MANY THINGS WE CAN NO LONGER WEAR.  (YOU NOTICE I AM DELIBERATELY NOT MENTIONING ADVANCED AGE AS A CONTRIBUTING FACTOR?)

THIS SEEMS PRETTY LONG TO ME, SO I'LL LET YOU GO...FOR NOW.  HERE IN THE CHICAGO AREA IT IS GORGEOUS, AND I WISH YOU THE SAME OUT THERE IN LA.

 BARBARA-

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Jul 24, 2008 03:16 PM SherriG wrote:

Yes, Barbara, I know this treatment is probably a long shot for me but I'm going to give it a try.  I already take the vit E so adding the trental is not that big a deal for me.  I figure if I only get SOME relief it will be worth it.  My pain doc is the one following me on this since she has three other patients with the same condition.  All three of us are starting this therapy and we are doing our own "clinical trial".  I just pray there will be some improvement.  The director of the clinical trial in Iowa said that it can take 2-3 months before any improvement is seen but then it is fairly rapid.  I've got my fingers and toes crossed that this will work to some degree.

Jul 24, 2008 04:50 PM Binney4 wrote:

Praying along with you, Sherri!

Binney 

Jul 24, 2008 06:26 PM SherriG wrote:

Thanks, Binney.  I'll let you know how it goes.

Jul 25, 2008 01:12 PM barbaraellen wrote:

hi sherri,

sorry if i was sending out the wrong vibes on the trental thing,  i took it because i thought it would "dissolve" the scar tissue,  i didn't have any pain, so i have no idea if it works for that,  if they are getting good results, then of course you must try it. 

barbara-

Jul 25, 2008 02:27 PM Binney4 wrote:

Hi, Shari,

As Barbara suggested, I'm busy getting the word out to lymphers (therapists, researchers, whoever I can buttonhole!) about your experience with the laser treatment. Do you happen to know if it was a Riancorp cool laser, as that's what's FDA approved, and if so, have you contacted them to let them know about this possible "adverse effect" (which is apparently the medical term for "disaster")? I think it's an important message. I have gotten some interesting responses and will share them with you as soon as I can sort them out. This BP is new to me, and I'm trying hard to get my mind around it.

Barbara, am I correct in remembering from your ACOR posts that you have LE therapy once or twice a week, with a therapist who came highly recommended? May I ask why it's once or twice a week, and how you manage the swelling between therapy visits? The reason I'm asking is because I'm running into one consistent assertion from the people I'm talking to who have experience treating LE in combination with BP. They're unanimously hopeful that the swelling can, in fact be reduced and controlled, but the therapy has to be right for your situation. The goals would be to decrease limb weight, offset dependent (hanging down) positions with compression and support, and protect the arm from harm and skin erosion, and those goals are apparently possible with the right interventions. This would decrease the threat of infection as well, which in itself is worth whatever effort it takes to get there. OF COURSE you don't have to answer me if you don't want to. I'm aware I must be coming off as intrusive here, but I'm surprised at how commonplace BP is among some of these therapists, when it seems so "out there" from the patient perspective -- lonely and isolating.

Shari, I can't use my right (dominant) arm for much either, but just due to the LE. But typing is out, because it causes my hand and arm to swell. So awhile back I bought a left-hand-only keyboard called a FrogPad that is small and easy to use and has all the functions of a full keyboard. It did mean I had to relearn the keyboard (back to Typing 101, which I didn't even like the first time around!), but within a few months my typing speed was back up to what it had been two-handed. Something to think about anyway. It's here, if you'd like to look it over: www.frogpad.com

Hugs all around!

Binney 

Jul 25, 2008 04:44 PM barbaraellen wrote:

hi again, binney,

so glad you are getting the word out.  if i tried to do it, i am sure my computer would blow up as a show of sheer contempt for my puny effort.  what does ACOR stand for? 

until i found this forum, i knew only one other woman who had both conditions.  she had all her radiation and surgery done one year after i did, and almost immediately developed le and bp.  she now sees her le therapist maybe once a MONTH!  she says she really doesn't need her even that often, but feels she should check in. she also has her arm in a sling most of the time.  it sounds like a good idea, but i couldn't do that anyway. 

i am able to maintain the swelling pretty well with the ordinary compression sleeve, not custom.  i don't do much except a little light stroking with some eucerin after a bath.  when i first developed this, after that infamous plane trip, i was running 2 and sometimes 3 times a week.  but in a few months, it seemed to settle into a size that looks almost normal.  if i didn't wear my sleeve and glove every day, though, it would blow up again.  i never went over "mild to moderate."  it seems that once a week with my therapist is enough, and OF COURSE you may ask me anything about these situations we all have in common; there is nothing intrusive about trying to understand as much as we can from each other.

i told you about this other lady because i never heard of anyone else. you know people who have both conditions? they are all therapists? or the patients of therapists? how did you find them?  surely not from the le network?  

i cannot tell how restricting the le would be for me because i had the bp first.  i blame all my hand and arm weakness on the bp, as well as the abnormal way the arm hangs.  the le does not cause me any pain...yet.  i just hate having to wear long sleeves all the time, and that hot glove.

i get around a lot.  i go to airports, malls, theaters, everywhere where there are large groups of people.  i have never yet seen anyone with a hanging arm or a lymph glove or bandages.  i think there are more of us out there than we see.  i think they just don't go out.  

someone else told me about that left-handed keyboard you use.  i am thinking about it.  i am getting pretty fast with my pecking here, but i make many mistakes, and i hate not being able to use upper case letters.  the english major in me disapproves strongly.  i just don't know if i want to frustrate myself on purpose.

oh, i love your interpretation of  'adverse effect.'  it's right up there with 'discomfort.'

nice weekend, everybody,

barbara- 

Jul 25, 2008 06:00 PM Binney4 wrote:

Hi, Barbara,

ACOR stands for Association of Cancer Online Resources, and I believe that's where we first "met," on their LE board (where I use a different screen name -- I sent you an email telling you about this site).  So I think it was probably me that told you about the keyboard on that site too, since I'd just gotten used to it and was gushing about it! Goodness! An English major, huh? In that case, typing all lower case must be cruel and unusual punishment for sure!

It's the patients of therapists that have BP, but what gets me is that the therapists find it fairly common. So where are all these people? Like you, I never do see them running around, even when I go to the sorts of events where bc verterans hang out. I have to agree, they must be staying home, which is a possibility that really tears me up.

I'm assuming you and Shari are shopping for long sleeves to "hide" the compression sleeves, yes? Do you know you can get them in a wide variety of colors from Juzo or Bio-Concepts, and in patterns from Lymphedivas? With my choice of colors I feel better about appearing in public, and have even had people ask me which boutique I buy my gloves from! (Duh!) Sort of like the people who asked, when my hair came in curly after chemo, where I got my hair done. I just told them forget it, they couldn't afford it!

Yes, do have a delightful weekend,

Binney 

Jul 25, 2008 08:33 PM Sharalyn wrote:

Binney and Barbara...so much good information and a pleasant surprise to find your postings when I checked in today.  Well, I spent a lot of time on the internet looking for the stem cell miracle to no avail....but I found a specialist whose group of M'D.'s deal with BP.  It just so happens they are located in Cinn. Ohio where I was planning a trip in October so I called and spoke at great length to this doctor's assistant.  They mostly treat BP on babies but have been seeing adult BP patients too. (Guess there are more of us popping up lately)  I made an appt. for 10/17.  The webside is (I am going to resubmit this because it won't let me post with this website cc)  Needless to say, I was excited to find these guys...the asst. told me that there are only a handful (no pun) of doctors in the US specializing in BP.  At least it's a step in the hopefully right direction. 

BTW....in what state does everyone live??? California by any chance???  Anyway...I can't tell you how impressed I am with you Barbara and your clinical knowledge re BP.  And...Binney, I am also impressed with your great sense of humor which we sooooo need dealing with this unrelenting crapola!  I've picked up more tips from U2 than I have in the past 10 years!  It doesn't cease to amaze me how all the PT's seem to know about BP but it's just the same ole treatment offered and no one knows what the latest research is.  I have found with the lymphedema that a nightly message helps more than anything along with wearing the juzo sleeve (not the custom one...that was horrible) in the daytime.  When I travel I take the jozie pak (i know I spelled wrong) and at least these measures keep it soft.  Whenever someone asks "what happened to your arm"...I just say "It's a long story". 

Thanx for the info on the Frogpad.  I give you a lot of credit for learning a whole new way to type.  You are right tho about causing more swelling so I don't type much like I used to.  I am going to look up the lymphedivas site now.  Before the BP i just kind of stayed in denial about my lymphedma meaning always wearing long sleeves and hiding it whenever I could.  Now I realize that I have spent way too much time being vane! And...what you said Binney about running into other people..get this...I've have LE for seven years and I NEVER run into anyone else.  Maybe they are all on another planet...get me a ticket please! Do you ladies have pain with the BP?  With LE, always the heaviness and the strangling sleeve but no real pain.  Now sometimes I feel like large needles are sticking me in my last two fingertips along with the numbness, tingling and weakness.   Are you on any meds that help?? Well I guess I've written enuf for now but am sooo very glad to have found this site and met you via internet.

Hope you have a nice weekend!!

Shari

Jul 25, 2008 08:34 PM Sharalyn wrote:

Sorry...won't let me post the link.