GRRRRRRRRR I HATE LE..........
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kira: i might have misread your post. i def. have le in the right hand. wear custom gloves, but wrapping at night is most helpful i understand the hands not that common, and a pain to deal with, but it is recognized as le...just the tingling part, like you said, isn't . i also have neuropathy thank you, taxotere..! 3jays0
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3jaysmom: My LE is primarily in my hand as well (and I was told by my first LE therapist that it couldn't be LE as it NEVER starts in the hand: WRONG.) What I wrote is that the PA told medigal that it couldn't be LE unless her hand tingled--nonsense. Personally, I don't get tingling, but with neuropathy and LE, tingling makes sense. It was just the PA telling Medigal that LE=tingling hand.
Andrea Cheville wrote a great paper for the LymphDivas on the need for hand compression, and she mentioned us hand swelling people:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
Even a normal lymphatic system works harder to drain lymph from the hand than other parts of the arm. This fact explains why hand lymphedema is often the most challenging to treat and why lymphedema specialists take great pains to prevent it. Concern that compression sleeves may inadvertently trigger hand lymphedema underlies the recommendation to always wear a compression gauntlet or glove with a sleeve.
Medigal: think about cording--it can come on at any time and feels tight.
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Also, since you have a risk for LE, maybe it's time to meet with a LE therapist for advice and baseline measurements
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Katherine: It just stinks to join the swell club, and I'm sorry. But you are so good to catch it early and with early treatment you have a very good chance of getting it under control quickly. Taxoterene can cause lymphedema and you're right in the midst of treatment, with so many insults to the lymphatic system. This WILL get better.
Things I found helpful, there's a book by Burt and White I like: it's the top of the list
http://www.stepup-speakout.org/resources_for_lymphedema.htm#Books
A group of us from this thread created the site to store all the great information we get from this site.
Also, lymphedema will not stop you from being active--you may need to wear compression, and go slow, but exercise is good for lymphatics.
MOTC who posts on the thread, lives in the DC area and was featured in a running magazine.
When I went to the NLN conference, I asked Jodi Winicour of Klose Training what exercise she'd advise for me, and she said Pliates, but do it one on one on the "reformer" first, then join a class once I'd gotten it down.
Currently I broke my LE hand, so I'm a slug--but riding the exercise bike to try and not become a huge slug.
Also, on the site, there's a link to Pat O'Connor's site on emotional reactions to LE, and I found it helpful
http://www.stepup-speakout.org/patoconnorcopng.htm
Let us know how you're doing.
Kira
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kira - thank you for the wealth of information. i only have it in my fingers and hand. So weird. Especially like the info on exercise. Thanks!
One quick question: You posted a few weeks ago the picture on HOW to wrap ... with WHAT do you wrap? I'm going to start doing it at night because I'm always more swollen in the morning than in the evening. Where do you you get the bandages? What kind/brand do you get? Thank you!
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Dawn-Hope, you need to be taught how to wrap, and it takes a lot of time to get it right--and a bad wrap can do more harm than good.
There are these pictures at the top of the thread on how to do a full arm wrap, but the link doesn't work. Here are the pictures from stepupspeakout
http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm
I do my wrap differently from the pictures: my LE therapist created some gray foam to go over my hand and on my palm.
You need to be shown, again and again, by a qualified therapist. And, as I've found, I needed remedial sessions--I wrapped to tightly and caused problems.
Kira
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thank you! wrapping does look way complicated. my therapist wasn't too keen on me doing it and i see why now ... mine isn't severe and it looks like you have to a master's degree to get the hang of it. wow. this c$#@ doesn't end, does it? thanks again for your help. and the website you all created is a true god-send. thank you for all your hard work. don't know what i'd do without you guys. thanks!
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I checked the cording link and my arm does not look like that. However I am of an older age and it's hard to tell what is "cording" and what is just an ugly older arm from ageing. I am very concerned about seeing a LE Therapist because my insurance may not cover it unless my Onc says I have LE and they are only interested in finding fatty lumps it seems. I also, after reading some info, am very concerned about getting a not well trained therapist who may do me more harm than good. I want to study up on the page which may give info on good therapists in my city and state. I just don't like picking one "out of a hat" as they say. At this point I can see no swelling I recognize as LE so maybe I can do some of the exercises on the pages I printed and drink lots of water and help myself. My left arm does feel a bit better today. Thanks for all the help!
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Dawn-Hope,
Wrapping takes time to learn, but it's one of those tools that is very valuable to have. Sometimes therapists get "lazy"--and personally, I think they should teach everything--how to wrap, exercises, MLD, get us compression garments, and then we use the tools we need.
Medigal: glad you're feeling better, maybe next time you can see the onc, and not the PA. I had cording, and that tight piano wire was fairly easy to feel. It was just a thought--glad you don't have any.
Kira
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Kira, really, I also wish to thank you and Binney for coming to my LE venting/pissed off thread ( LOL) to help us. Letting us vent.... venting with us...... then helping. This has meant a lot to me, and so many other women here. Thank you!
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Katherine, so sorry you've had to join our Sorority of Swell, but glad you found us. Catching it early is cause for celebration -- there's even studies that show early treatment results in easier management. So, hey! Good for you for being aware! Keep us posted on your progress.
Dawne-hope, learning all you can about wrapping, self-MLD, helpful exercises, skin care, and your own personal triggers is a steep learning curve, but it's the best way to outsmart this stinking condition. Be prepared for anything! It gives you back control of your life. Whew!
Just know we're here for you when you get frustrated with the stupid bandages -- we all did (still do, from time to time!
) Estepp, when you think about it, helping other swell Sisters is just another way of venting. If we ever got over the outrage we sure wouldn't be hanging out here!
Binney 0 -
Kira, thanks for the link.. i bookmarked it, and am going back for more later. interesting to me, he talks about dr. Le- Meistre; who has MS. and i guess they call LE a chronic illness, too.. now i can say two of em..that's not so good, but two of em that i don't let get the best of me.
Dawn-Hope, you NEED to learn to wrap!! my therapist discharged me before she taught me, and i got gloves for my hand. i went back in, and demanded to learn wrapping before i was discharged.. she said i could always come back in, if it got worse..2 things, a. if it gets worse, she won't be able to fit me in for weeks!!
and 2.. even more imp. it did get worse, and will get worse, if i don't wrap!! my first eval i was in good shape, a lite case, like they said to you... then, i got into more physical things in my life, and it was no longer a lite case... i find the MLD is imp., but when my hand bothers me, only the wrapping will do.. i don't use the foam yet, but just the bandages seems to do what MLD, or the gloves, won't. I guess from what Binney has told me, that's the way it is. the wrapping seems to keep the swelling under control. the gloves are to prevent it.. isn't that it you guys? whatever it is, its working... i bought a new "contraption" form HSN, that i love, after dev. truncal after surgery. i got it for my chemo bloat; but wow!! its a relief for the le.. its a diva defined garment.. a tank w/ lite compression on a tank, but not in bust area, which is empty;has a place for forms.. heavier compression for your belly area; which is adjustable with a kinda bra type band.. it's helped all the ares i needed it for. am ordeering 2 more. ive had to return 2x's their sizes are actually cut bigger than most shapewear, nd im wearing smaller ones. i just put foobs in permantly in the empty cup, and im good to go!! thought you might want to ck it out.. its pretty affordable, and has helped the truncal where the dog ears were.... 3jays
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I am planning on getting my reconstruction soon, has anyone noticed that made the lyphedema worse? Thanks and God Bless!
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Joy, I just saw your post - I am so sorry you have LE but so glad you found this forum - it has great information and there are some wonderful ladies on here who know their stuff! Check out the thread in this forum that says, "Do you have a routine?" It has some really good info. on how to keep the LE at bay.
Terri, I have read where the additional surgery for reconstruction made it better, and also, that it made it worse, but I don't really know for sure and am totally unqualified to even hazard a guess! I had a bmx in Feb. with no recon. Maybe Binney or Kira will check back in - they are more up to speed on this stuff. Best of luck to you!
Suzanne0 -
TerriD: I have heard that reconstruction can help--if it removes scar tissue that obstructs, or it can cause more trouble
I wanted to tell you that a brave and wonderful woman on these boards (narrows it down--not!) took the Dr. Massey information about acknowledging and dealing with lymphedema to her prospective surgeon and asked them to step up to the plate and be as pro-active, and it looks like she was heard. Dr. Massey is a reconstructive surgeon, who also does lymph node transfers (unfortunately, not proven to help/cure LE) but has gotten trained in LE therapy and founded a "National Lymphedema Institute"--it creates an "niche market" for her--but it also raises the stakes for anyone else doing reconstruction
It's funny--you can't find it by google, but here's the link
Laura: I totally agree with Binney--are we nut jobs for hanging around the boards, or are we working through getting control of lymphedema in our lives? Now, Binney is a saint, I'm just her nut job side kick...This thread has touched a nerve, and brought so many of us together, so thank you for starting it.
Kira
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LE makes me insane and scared at times. Coming to these boards often calms my fears. (And if it doesn't at least I feel less alone.) It's also where I come to for information. I am grateful to all for the knowledge I've gained here. Thank you and gentle butterfly hugs.
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Kira, Binney, Laura and the rest of my lovely, swelled sisters:
I have thought about that alot: Does coming to this forum help me or hurt me? I have heard some folks say that it keeps us obsessing and focused on our problems instead of moving forward.I can't speak for anyone else, but after getting through a cancer diagnosis, bmx, basically having a mental crisis after the LE diagnosis, and then learning how to live with the crap (LE, I mean), I can honestly say that this forum has saved my bacon. LE is not that big of a deal to me now. It took me six months to get comfortable with it and to learn to live with all the stuff I have to do to treat it, but this board is where I got the knowledge, the direction and the emotional support to do that. There are very, very (re: none) few women in my area willing to 'come out of the LE closet' - I'm basically it other than one other lady I know (and she's awesome).
I think about people like kira (nursing and taking care of folks), Binney (advocating and politely kicking butt), Member of the Club (running marathons and triatholons and decatholons), Doe (!!!!she's like the bionic woman. No stopping her regardless of what the hell comes up in life), Otter (cracks me up and makes laugh so hard I snort), Jane (so much great info. on the website step-up speak out - how many people would take steps to help other LE sufferers like that???), Laura (doing hair and staying sassy), Faith (playing guitar and helping kids), Lowrider (honorary swell sister - she's so sassy and fantastic), I could go on and on for days.
I wouldn't have so many examples of how to live life and keep going if it weren't for this site and my participation in it. I've started back singing in church, playing my guitar, teaching myself how to knit (this will never be a money maker for me, alas. I'd better keep my day job), in other words, I'm moving on and living my life, and actually enjoying it for the first time in a looong time. I have the women on these boards to thank for that. I come here for inspiration, positivity (is that a word?) and yes, I like to bitch about LE to people who KNOW what I'm talking about. But mostly, I just really like y'all.
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Hey Ladies -- I've been lurking here because I don't have LE but care about a lot of the posters here... but I'm delurking to say: there are studies that show that women with BC who bond in chat groups or forums like this have better survival rates (or something like that)... which makes sense if you think about it. Venting means not holding it in all the time (which we all know is bad for us)... so I say vent away
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Thanks, Lilah. I'm mostly a daily lurker here, have been for 3 and a half years, so I feel like I know y'all too. I have Stage 0 LE and have very little trouble from it, but I have sleeves, gloves, and have finally learned to do MLD, which is, I hope, helping my system remember how to move lymph fluid along. I wouldn't have known a thing if not for this group, and coming here is where I keep my sanity. My DH used to say he thought my being here was just keeping me stuck in BC (like I could ever forget I don't have breasts or could have cellulitis or raging LE at the drop of a hat). Once I finally got an LE therapist and took him with me, he is a changed person, and he began to understand why risk prevention was such a big deal to me! Anyhow, I'm here for the duration. Thanks to all of you who are here for the rest of us.
Dawn
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Thanks for getting it: I have wondered about whether staying on the boards is "healthy": but I agree with all of you--you GET it--and other than my LE therapist, no one else--even well meaning family really fully understand.
I had my LE under the best control ever--now I get my cast off this week, and have to deal with what's under it, and I'm scared, and the whole work thing has me stressed, and I know you guys will understand.
And, like Suzy said, there's a bunch of amazing women on these boards.
Kira
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I too have been a lurker. Had a mastectomy last March followed by 6 rounds of TCH and am now on Herceptin through April and am taking arimidex. Stage 2, grade 2 and PR, ER and HE2/NEU positive. I was 73 at dx and got through surgery and chemo without major trouble.
In October was diagnosed with LE in my left arm though looking back on it I think I had had truncal LE for some time but did not know enough to recognize it and it was not caught by my otherwise caring and competent medical team. Getting adequate treatment has been difficult and this discussion group has been invaluable in helping me supplement what my LE therapist has been able to tell and teach me. Although I am frustrated daily by this new curse of LE, which is worse in many ways than the chemo, I am enormously glad to have found this wonderful group of assertive and educated women who continue to teach me so much. Please keep it up. A lot of us depend on you.
--Anne
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Lilah and Anne: Welcome!
Anne, I am mostly uneducated but am very assertive, if that helps any.
Seriously, hang in there. It gets easier; it's just a lot to learn, and you're mostly on your own with it. But you will learn how to manage it.
Kira, I am praying for you - please try not to be scared. Whatever is under there, you can handle it.
Sending lots of hugs and brownies your way, my dear friend.0 -
Kira, I hope there is a good surprise under that cast, and that all the hard work you and your therapist have done will give you a head start on a speedy recovery! I try hard to be an optimist, and for you, I really hope it is true!
Dawn
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Suzy and Dawn, thank you! Hugs, brownies and optimisim are hugely appreciated.
Binney told me to expect it to swell up, and I'm trying hard not to freak about that--but I do know I have you guys and a good LE therapist on my side--and I seriously need to remember how to wrap, because I think I'll be wrapping a lot (I asked the OT about wrapping, and she said it's fine, as long as the thumb is immobilized--that's why an OT who is trained in LE is invaluable.)
For me, any swelling is SO upsetting, even though you've got it expect here--I broke my hand.
Anne: I wanted to welcome you to the club you never wanted to join, but it sounds like you're doing a great job with your LE.
And Suzy, it's so good to hear that you're playing the guitar (someone has to back up Willie Nelson) and knitting and singing---man, you are impressive.
I did play ping pong with my right hand yesterday--and I can't say I was any worse than left handed, so maybe there will be tennis in my future some day....
Kira: trying hard not to catastrophize, and sometimes suceeding--just call me Wendy Whiner--sorry for whining, I'm just under the bed, today, waiting for my brownies.
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Ditto!
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I just have to comment on the staying on the boards thing. I've been here since Oct. 2008. At first I came to BCO to get information, comfort and hope. I stay to give the same back. I also volunteer at a breast clinic and infusion center to help women deal with mx and chemo, fit wigs and hopefully soon to fit prostheses and bras. This is something I cannot help doing. I am compelled. It isn't because I can't let go of cancer. I can't let go of an opportunity to help someone else get thru this nightmare. So many people on this site helped me but there was no one in my physical world to help. So having survived the past 2 1/2 years, I'm ready to be there for other women here and in my physical world.
I know other women who stay after they are thru the crisis feel the same as I do.
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Hi ladies-I know we have probably spoken about this before but why is my arm sooooo darn painful somedays? Today I feel like cutting my arm off! Is it just because I am having a "flare up"?
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Recon - I cannot speak for implants, if that's the route you are considering for recon. I had a mbx/diep at the same time and ended up with LE from the bmx. The diep needed two more surgeries to be finalized. The subsequent surgeries did not worsen my symptoms. I was terrified that surgery would make it worse, and yet I needed to finish the procedures. For me, the end result has been good and fine, no extra problems.
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Its painful when??? during a cellulitis or lymphedema flare up? teh cellulitis does make my arm very tender and the lymphedema makes me feel heavy and t-i-hg-h-t. what have you tried for the pain? I also was taking xanax to help keep myself calm during my episodes, i noticed my BP got very high during my cellulitis flares. (((((((hugs))))))))
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Hi Terri-I've never really thought I might have cellulitis but I might look into the symptoms. I'm so new to LE that I don't know what is or isn't a flare up. I just take normal over the counter drugs during the day and at night something heavier-although they don't always work! I'm becoming a druggie!!! lol I am finally seeing a therapist tomorrow so hopefully she will have some answers for me....thanks for your reply
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I agree with all about staying here because someone actually 'gets it' when it comes to LE. Last week I was coming out of the local 'Firehouse sub' shop, an elderly woman saw my gauntlet and asked me if I had surgery on my wrist/hand. I just told her, no complications from breast cancer surgery and wanted to leave it there and continued to walk to my son's truck, she asked, if everything was OK, and I said yes. My son was with me and asked when we got to the truck, what was that about, I told him, question about my gauntlet and he just rolled his eyes that someone I didn't know actually asked me a personal question. Then there is the woman at church who every couple of weeks ask how is the swelling in my hand doing/is the swelling going down.
I also hang around the boards to give support to newly diagnosed women and since I am out of work now, I volunteer at the county 'wig bank'.
IMC if you had cellulitis you would know it, it is a warm, red swelled area that indicates infection.
Sheila
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Thanks Sheila-there is no redness so I think it is probably just a flare up.
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