GRRRRRRRRR I HATE LE..........
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Abby - your night sleeve is a Tribute, yes? I bet Solaris will alter the hand for you. I know for a fact they can make the thumb opening at the base of your thumb (they call this "thumbless") and they can make the finger open at the finger tips or at the knuckles, etc. Maybe what you need is a hand "area" that doesn't separate your thumb and gives you a little bit of wiggle room? I imagine they could make something like that. Maybe your PT could brainstorm with them?
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yes it is a Tribute. I do plan on talking with the fitter about it when I get my compression bra. I am also going to talk to the therapist about it next week.
Now will somebody tell me where I hid the gaunlet when I took it off to wash the dishes. lol and some think chemo brain isn't real.
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Definitely get in touch with the folks at Solaris. I bet you and they can figure out a solution. My LTx sent my Tribute back to Solaris for adjustments, which included doing something about the thumb (where I get blisters). A woman from Solaris called me today and asked me to explain how it was bothering me, and we talked about possible solutions. All I can say is WOW! Talk about personalized service.
I also have peripheral neuropathy (due to brachial plexus injury). Neuropathy definitely makes getting gloves to work tough. My glove will be reasonably ok, and then my fingers will suddenly turn blue and become painful for no apparent reason. This doesn't happen (or not as much) with my Tribute. Hope it is still true when my adjusted Tribute is returned. - KS1
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I have an LE question for all you "experts." I have just been through MLD training but since I was taught how to do the arm massage I now have a red area in the upper arm just before arm pit & upper inside of arm. I didn't have a problem in this area before the MLD. I liked wearing my LE sleeve (took a while.) Now the top band of the sleeve makes my arm hurt a like crazy. So now I don't know what to do. Any suggestions?
Thanks in advance.
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I've not been diagnosed with LE, and I've had no issues with it (yet) just hoping things stay that way! I had 6 or 7 nodes test positive and removed.
I am flying for the first time next week - and I do have a sleeve. I've really had no other reason to wear it yet, so this will be a first for me. Any suggestions, recommendations and tips would be greatly appreciated - thank you!
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Norma, I can't tell from your post if the red area is new or has been with you for a couple of weeks or more. If it's only happened in the last couple of days, please have it checked out at once. Don't wait until Monday, even if it means heading to the ER. Redness can be a sign of cellulitis infection, which can spread rapidly and become a true emergency sometimes in just a couple of hours.
You might want to use a permanent marker to draw around the reddened area so you can tell if it's expanding, shrinking, or staying the same. If it spreads, don't waste any time getting help.
Here's a page about lymphedema emergencies to help you identify problems:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htmHopefully it's not anything so dramatic as that. Lymphedema is an inflammatory condition and skin reddening can happen because of inflammation. Since massage and compression are helpful for clearing up inflammation, but they should NOT be used when there's infection present, it's important to figure out what's causing the redness so you can use the best strategy for fixing it.
Keep up posted -- we'll be thinking of you!
Hugs,
Binney0 -
so glad to see so many ladies here, although, not because you're having so much trouble..TINA: what part of Fla. do you visit? there are some of us down here...my LE is ok..somedays i can't tell if the pain is from the neuropathy, or LE; from the swelling, i know its le some days. have started since 2nd surgery, to pay attention to area under, and directly aroung my armpit. i pray it doesn't get any worse. am looking up the cami you recomemded, Binney, and now own Gottfreid sleeves, and gloves. betweem ms, le, and neuropathy they gotta stand in line some days for me to treat them. wrapping fingers at night usually does the most good...3jays0
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Ooooh, a place to vent! I hate my LE!! But after reading here about what you gals are going through, I realize how lucky I am and will try to tolerate the damn sleeve. My LE is under control and I have no pain. But the whole sleeve routine sucks.
God bless all of us, and hang in there everyone.
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After 2 years plus on these threads, THIS THREAD is the one that has made me furious, petrified, and heart broken. Ugh, words just don't do it to express how LE is the complete and total pits.
I have mild LE. I had every node the surgeon could find (22+) removed because they looked so bad. Initially, I was very paranoid about LE. My first flair was two years ago during chemo. Totally freaked me out when my whole arm became swollen out of the blue. I was heading out with a friend for a fun Sat. of girl stuff when I inadvertently pulled my shirt sleeve up and voila!
Since then, my swelling has stayed mild and with 6 surgeries, reconstruction, staying NED, I have paid little attention UNTIL NOW! I've had shoulder and some upper arm aching, but I didn't connect the dots. NOW I see from your posts LE can be life altering with little in the way of treatment. How can this be?
Now for my whiny, baby rant, so tiny compared to what you Ladies live with....I AM PETRIFIED! Cancer has made me a Minnie Mouse as someone to aptly put it, scared of my shadow, which I HATE, and now I can add LE to the list of things to fear. I am so appalled that with all the treatment we received for the cancer NO ONE takes responsibility to come up with decent options to treat LE. The abdication of this by the docs is ridiculous and unacceptable. With my issues, they just said "Have you been to PT, get to one of the LE specialists--I don't know much about it." Except for the day I had the significant swelling, no doc has ever looked at my LE issues. HOW CAN THIS BE?
I am definitely making brownies today and wish I could cyber send them to each one of you. My heart is sad and I am furious for you guys. Thanks goodness for the support here. (((hugs))), deekaay
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Gentle hugs Deekaay, pass the brownies, I'll bring the tea.
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Kitty, I'm so sorry you're struggling with the nightsleeve. Mine should get here in about a week and a half. I hope I don't have issues!!!
Ginger, welcome - you are such a cutie pie!!! Sorry you have LE, but this is a great forum for info. and wisdom. Just don't expect any from me. I am the comic relief.
((((Deekaay))))) I totally understand your fears. I had them, and then I got LE. But you know, as bad as it can be sometimes, it's not always bad and life is pretty good overall.
I am actually making brownies today (and mine ALWAYS have frosting. A brownie without frosting and walnuts is just WRONG.) so you come right on over and sit yourself down. Hang in there, girl.
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thanks Suzy! Comic relief is always a good thing - as are frosted brownies! Let me know if you need my mailing address
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Stephanie, just noticed you said you do not have LE and that you were just looking for some tips. I'm sorry I got it wrong the first time. I guess I was thinking about those brownies!!!!
Do you have a compression gauntlet or glove to wear with the compression sleeve? You need something for your hand as well as your arm. You don't want to fly with nothing on your hand...it could trigger LE in the hand. The only tips I have for flying is just to wear the compression garments, and occasionally raise your arm over your head straight up and pump your fist. Also, drink lots of water and do deep abdominal breathing. All of these things help to keep the lymphatic system moving and opened up. I have LE in my right arm so I always try to get a window seat on the right side of the plane so that I can elevate my arm and rest it against the wall. It actually really helps!
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yep - thankfully no symptoms for me yet & hoping to keep it that way. All I have is the sleeve, which I've not really worn yet - just tried it on at the cancer center to be sure it was the right fit.
I do not have the glove / gauntlet, but guess I'd better check into getting one this week.
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Hi every one how are you all keeping hope well!
I also experience arm lymphoedema,in fisiotherapy and it helps a lot,swim is also good for this.
This burning pain in the chest and on the scar do any of you also experience this pain from radical mystectomy no recon.
And now a new complain,pain in the buttock,hip.nothing seems to help for this,some of the lady`s said it is a side effect of Tamoxifen.
I thought after the mystectomy,chemo,radiation and 5 year on Tamoxifen,everything would be fine,but everyday there is something new to complain about.
So i must be positive and go on with my life.
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I tried to post last night but I guess it went into cyberspace. I was too tired to retype it.
Binney,
The red area in my arm pit & upper inside of my arm I've had for about 2 weeks. I've had red area & swelling to the right of where my right breast was, I've had from mid-july. I've been on & off antibiotics & predisone as prescribed by my PCP.
The side area is much improved. I didn't have the area under my arm until after I was being taught how to do the MLD by an Le therapist. The under arm area just seems to stay the same, not any worse but not any better either. But wearing the sleeve is causing me more pain that I didn't have before. I have been seeing my PCP for the inflammation.
I know I should not do this, but I have been avoiding the doctors because my husband hurt his back and was off work for almost 2 months and budget was very tight. I printed off the info you recommended and will show it to the doctor.
But I'm starting to wonder if I should be going somewhere else. I'd have no idea who to go to now. Thanks for all the good info & support. NJ
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I made brownies and they lasted 2 days! No frosting on top-just mini M&M's...they were sooo yummy! My compression bra has worked wonders on the swelling in my armpit. Now my arm is swollen. At this stage all I can do is laugh!
Love and hugs to all xoxo
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3Jays, my mother lives in St. Petersburg, on the west coast. The humidity on the west stinks! I used to look forward to visiting, but now I limit it to cooler times of the year.
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hey tina< yeah, the humidity is killer. for our little visit this wkend we had an unusual cols snp. problem with me, is M>S> < and LE seem to be affected to changes in the weather, either way. cked today. my complex put the heat on in the main pool, so tired or not, im getting my sorry tuu tuu in the water to swim . helps with all my aches and pains.by the way, barbara a. is near st petes, so you can meet her the next time you visit your mum...3jays
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3Jays, I'm visiting my mother for Thanksgiving, but it will be a short and busy trip. Plan to go back in January. Who is Barbara A? Is that her username?
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I do. But the last time I saw him, he measured my rm first thing in the moringing after ny best massage and said "No lymphedema in the arm!" I am going back to set that record straight and getting it stricken from my records. I am informing him what Dr. Yang said about brachial plexopathy. He ordered a neck MRI for me when I complained about the BP pain. I have since been told an MRI of the brachial plexus is more conclusive in determining diagnosis. Not enough muscle atrophy yet to show on EMG.
Doctors smoctors .................. educating them is like trying to take the ball away from a 12 year old. It is rarely in our court and they won't let go!
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Aw, Norma Jean, you've had way too much to deal with lately
! I hope your DH is doing much better and feeling some strength return.If you're not getting good answers and you're having more pain it might be a good idea to get a second opinion from another therapist. There's a Therapist Finder here to help you locate the well-trained ones nearest to you:
http://www.lymphedemablog.com/find-a-therapist/
When my sleeve causes me more pain it's because the fit isn't right, and usually (for me at least) that's because the top band is too tight so it causes problems "upstream" in my axilla and chest. Working with a therapist who can help you trouble-shoot is really reassuring, so you don't have to figure it out all by yourself.
Prayers for just the right people to help you find just the right answers. Keep us posted!
Binney0 -
Did anyone else's cancer breast turn pink, red, rashy, or splotchy, and swollen during chemo treatment, before surgeries or radiation? I started out with four fairly large tumors in the breast and one large lymph node. I just finished 12 weekly Taxol+Herceptin. The breast started with these reactions around week 8. We know chemo's working because of my MRI from last week. I know breast lymphedema is usually caused by surgeries but I read somewhere that it can also be caused by cancer and treatments.
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Thanks Binney, my sleeves were just fine before I started the MLD. I really did enjoy wearing it because I have nerve damage down the back of my arm and the sleeve helped to de-sensitise it. Today wasn't a good day at work so I didn't get a chance to call the doctor, but I will more free time tomorrow and will call the doctor. Thanks again for your advise & support, NJ
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Redwolf, I don't want your post to get lost in the thread: I don't know the answer, but it seems to me that it's a very possible reaction to the chemotherapy--it's not necessarily breast LE.
I'll ask Binney to answer your question.
Hope you continue to respond and all goes well.
Kira
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Hey, hey, Redwolf! Hooray for the MRI results showing the taxol is working!
Onward! Have you been evaluated by a well-trained, experienced lymphedema therapist? If not, requesting a referral from any doctor on your team would be a good place to start. Here's a web page about how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
A therapist can take arm measurements and do a physical exam and should be able to tell you if it's lymphedema that you're dealing with and suggest how/when treatment can be started, in consultation with your oncologist. Your situation is fairly rare (mostly lymphedema shows up following surgery and/or rads), so if the therapist you try is baffled, don't be afraid to get a second (or third) opinion from others. You'll also want to ask your therapist about lymphedema risk reduction strategies, and about being fitted for a compression sleeve and glove or gauntlet that you can use prophylactically as you continue through treatment.
Do keep us posted on what you discover. Hugs and prayers, with joy, for continued healing!
Binney0 -
Thanks for the info. I'll keep you posted! Prayers for all! Praise Jesus for all good news!
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Tina,BarbarA. is her name, at BCO, and in real life. PM her, or she's on "for older women" and you can get her name there,justunderline her name in blue, and it will go to her home...maybe we'll be able to meet in Jan. when your'e here longer..let me know when its planned ..I missed who said it, i'll go back; but im totally stealing the quote about educating Drs.. hope its ok good to hear you, Binney...you are so my Guru inall things LE you, and a few of the other ladies here.. redwolf; your'e in good hands here..0
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Sisters, I hope your LE is doing ok.
Oh Deekay... as I read your post..... i got it! ( hug) I am sorry.
I am having DH type this as I pulled my back out on Sunday.
I am 75 % better but wanted to check in.
I will be back online more soon.
My LE is having issues as my back is out on the LE side.
Take Care sisters.
Laura
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Laura, I'm sorry you pulled your back out. Glad you are feeling a little better. I'd wondered where you've been. One of the things we've talked about here is how pain in your body can lead to inflammation, which can cause a flare. So it's a good idea to keep your back pain under control as much as possible so it doesn't contribute to further swelling. However, some of us have problems with certain pain meds or NSAIDs contributing to swelling, so it's another one of those trial and error things. At any rate, I hope your back continues to feel better and your swelling goes down.
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