GRRRRRRRRR I HATE LE..........
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Thanks purple I'm trying to sort everything out. I know i will be diagnosed Friday. I just got to push forward . Thanks binney for all the info. I confirmed my appt. for Thursday but I think I'm still thinking of postponing maybe for next month. Thanks for all the advice. I have a feeling I'll be here often hopefully i can be as encouraging as all you ladies.
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TINKER, I did PM you. Please look.
I am no DR. , but I dont think a 1 month postponement would be unreasonable unless you had symptoms or your risk was unusually high. Ask dr.......Your choice.
One last time here:
Post a reply
purple32 MA Joined: Apr 2012 Posts: 3,001 Mar 13, 2017 12:17PM purple32 wrote:
I posted this under ' my' all things gloves and sleeves forum, but thought it so important, I would ' double post' here. Feel free to PM your ' lymphediva friends' !
Josh Levin reached out to me just as soon as I posted about the loss of my husband as well as the bilateral LE.
He gave me the site
http://rememberbetty.com/grant-application/
All I did was EMAIL the person and got a very generous Gift Cert. for use at lymphevias.com
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Hi everyone i have a question when they measure the arm for a sleeve do they use the measurements from the arm when theres a flare up or is the sleeve ordred to fit the normal size arm? My therapist left me a little puzzled today when i asked her that question. It seems i do have stage 1 breast lymphedema and its very stubborn. Can someone give me some information on lymphedema in the breast. Does the breast ever go back to normal or does it keep swelling. My breast does not hurt, is not red or very hard. Its just swollen. I do mld and my therapist too but doesnt really seem to help much. She put me on a machine thats like a bike but you peddle with the arms. I think it made it worse. Does that sound like normal therapy? ugh I really hate lymphedema
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i have breast, bilateral arm, back and trunk LE. I go to a rehab center and I haven't ever use the arm-bike-thingy. I've been in weekly PT since August. (2x until February, now 1x weekly.)
Do you have another option for a LE therapist?
I finally found the right compression garment for my breast, back, and stomach.... It's making a big difference.
I'm plus sized, bilateral MX, no reconstruction. So... A bit of a compression challenge!
The garment was only $18 or so on Amazon after trial and error.
If anyone's interested I'll post a link, I think the brand name begins with an F.
Hugs and hope for more good days than bad! ☀️
Edit... The compression garment was on a clearance sale, I think. 70%off I just noticed! That's why it's such a deal.
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She did mld first and then she said it would help move the lymph fluid. It didnt feel right i only did 7 min not 10 like she wanted.
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She put me on a machine thats like a bike but you peddle with the arms. I think it made it worse.
TINKER
I know that machine from when I broke my L shoulder yrs ago...prior to LE
Did you have compression garments on ? Compression should be used I would think.0 -
tsoebbin
Just ordered/received one of these a few days ago! Havent tried it on yet, but it does look good,
Sassybax is my all time fave, but out of my price range :<(
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Tinker. You get first measured as a baseline. If your arm is much bigger they try to get it small as they can by wrapping your arm nightly. After a few weeks If they figure that you are stabilized to a size where they don't think you can get much smaller you get measured at that point for a sleeve. Your therapist should know definately know this, I smell a rat, meaning she might not be qualified.
That said, some of us are not swollen much and are ordered a sleeve right away such as my self.
If you were put on a arm peddle bike you would have to be introduced slowly like a couple minutes. Yup if your arm felt worse, then it was the wrong thing for her to introduce. Dont do it again without talking to her about it. Again I doubt this therapist. Also if you were to peddle like that Purple is right you should be in a sleeve and hand glove or gauntlet.
There are easier exercises that would not harm your arm. Google lebed method on you tube for example. They drain and train your arm gently.
Also the tai chi breather exercise I posted are wonderful to get fluid moving helpful to truk arm breast, I'll bump it up
She should do MLD for at least 30-45 min herself on you and also down the road teach you self MLD to do it at home which is a shorter MLD version to get fluid draining if you need that daily. It should feel as light if a stroke like petting a cat.
You must compress that breast to stop fluid moving in. Compression cami or tee is good.
Don't worry we have good ideas here. Keep asking.
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Thanks hugz im going to see another therspist tommorrow. I'm in the waiting room for my mammogram and im on pins and needles. Trying to breath. Thanks again.
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"I'm in the waiting room for my mammogram and im on pins and needles."
TINKER Thinking of you right now. Hope all is well.
Do some self MLD and DEEP D. breathing this evening and perhaps take some aleve and use a cool compress (NOT cold) IF needed.
Hope all is well! Pls. let us know. Shop for a compression garment too.
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Hi ladies
I got my mammogram which turned out to be 3D they finally got the machines. yay!!! I also had an ultrasound and everything is good no bc. Thank God. I saw my new lymphedema therspist today wow what a difference. She did a complete evaluation and my arm is fine. She said my breast will probably go back to normal. she showed me how to correctly do mld. My other therapist was just a waste of time. so glad im on the right track now. she's not recommending compression at this point. Im keeping my fingers crossed. My next visit she's doing total lymph drainage.
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Wonderful news Tinkerbell!
My update on swollen painful red breast: Went My LE Wed. who said whoa and called my MO who sent me to the ER. That doc thought cellulitis or possibly IBC (He did not say those words, just said we hope it's cellulitis), gave me Keflex and said to see MO asap. Saw her next day (yesterday) and she sent me for ultrasound right away and volia, a large pocket of what turned out to be "old blood". (sent for culture, no results yet). My breast is actually deflated. Anyway, it feels better but not great yet, and I'll continue the Keflex. Guess this was the problem all along. Wish I'd had the ultrasound earlier!
(Updated same on another thread.)
Thanks for your support.
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the lymphedema in my left hand and arm has gone away. I don't know why. I havnt used my glove or sleeve for a few days, not even the wrap. my feet have swollen up tho. they were doing that due to diabetes before the BC. I finally found a pair of thigh high compression socks big enough, going to try them and see. My hand sure is doing a great prune impression.
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Great news reflect and cliff. My radiologist said there was no skin thickness and no edema present on ultrasound. we are optimistic this swelling might be temporary. Crossing my fingers. Tha mammogram was very gentle but im 8 days away from that time of the month again keeping my fingers crossed it doesn't get worse.
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TINKER
Thank God...happy for you.
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Wow, I'm all so impressed with you guys and gals on taking care of yourself. Surely pays off in the end. Yup you all get four stars for being your own best advocate. Keep it up and seek different opinions if something feels not right.
Cliff maybe your compression sensitive and were blowing up due to heavy compression. Glad you have prune arm again but watch for any signs as I think you said your arm was big and LE at your size doesn't go to stage 0 and totaly disappear as your lymph system is impaired like a broken waterpipe. Perhaps you just had a nasty flare. I don't know. Watch and note what changes make a difference! Good foryou to care for your legs.
Tinker. Aren't you glad you ditched the fake first therapist! Good you trusted your gut
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they were doing that due to diabetes before the BC.
Try the compression AND elevation then, Cliff.
Be well!
Laurie0 -
congrats Cliff?
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Third surgery 5.5 weeks ago aggravated LE on both sides. Not just truncal now, but down my left arm and into that hand (I'm left handed). Barely got my engagement ring off for the surgery and could not get my wedding ring off. They had to cover it with tape. Since surgery I've been fighting the swelling in that hand and around my wedding ring. Went to jewelry repair today to get engagement ring resized so I can wear it again and had to have wedding ring cut off so they can resize it to. Debating whether I should finally invest in sleeve and glove now. Will need them to fly this summer anyway.
Considering all we go through with BC you'd think I would not be so bugged by this.
Sulking Scottie
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Scottie. Awe that rots! If you do have le I wouldn't recommend wearing rings because you can trap fluid and have a huge life changing problem. You need those fingers in good control for your photography. Try wearing ring on other hand. I know that sucks but it's better to be safe than sorry.)Swollen hands are hard to manage but it's doable. You need to see a well qualified le therapist because what you have described sounds serious. Have you seen a good one yet for truncal too? Google stepup-speakout.org to find a therapist in your area if you don't have one.
Yes if you have arm and hand le you will need garments for flying. Get far in advance in case they don't fit and you have to return and do a practice trialat home before you fly.
Elevate affected arm,drink tons water to keep fluid moving. Deep belly breath. Raise arm straight up in air and pump slowly 25 times thru out day. Let's us know how it goes.
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Scottie, have you considered wearing your rings on a necklace?
I cannot overemphasize the importance of getting properly measured and fitted for compression garments, with sufficient lead time for them to be custom-made if necessary so you will have them ready when you need to fly. Also consider purchasing a donning aid and donning glove. The former is an arm-shaped-and-sized tapered sheath of fabric (either nylon taffeta or that crinkly stuff that IKEA totes are made of—I prefer the former) with the narrow end sewn closed; at the end of that is a loop of ribbon.
You fold over the compression sleeve into a cuff so that it's easier to slip on. Then put your arm into the donning aid and then into the compression sleeve. Unfold the sleeve “cuff" and gently stretch out the sleeve (by the wide end) to most of its length. Then hook the loop over a doorknob or restroom-stall coat hook; with your free hand, grip the sleeve by your wrist and then pull your arm out of the donning aid (it can be tricky at first)—the sleeve will be fully on your arm. This is where the “donning glove" comes in: it looks like a garden glove, but the palm and fingers have rubber nubs for gripping the compression sleeve fabric in order to pull it fully on without snagging poking a hole in it. Then put on the gauntlet or compression glove, with its non-compression cuff overlapping the wrist of the sleeve.
Definitely do a few trial runs before your trip.
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Considering all we go through with BC you'd think I would not be so bugged by this.
Seriously? All the MORE reason to be ' bugged' and then some. It sucks - royally.
I am so sorry this happened to you, and hope you will get a handle on it soon with a good LE therapist. My wedding ring has been in safe deposit box for almost 5 yrs. now.
The sleeve and glove are your decision, but if you are looking for input, I say now is the time. Don't wait and suffer through more angst. Just do it.
In the meantime, just try a regular ISOTONER glove and see how it feels perhaps. Buy a pair online and wear one around the house while you wait for the real deal. Bear in mind, the ' real' one will not be covering your fingertips.
IF you are a candidate for the beautiful Lymphediva sleeves ( lymphediva.com) you can get some paid for through a site called rememberbetty.com (Simply email them) and they do have gloves now as well.
Good Luck to you.
All my Best,
Laurie
P.S I find a simple Playtex dishwashing glove helps enormously in getting my sleeve on and getting 'all the 'wrinkles' out. See what works for you - whatever seems least overwhelming right now.
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Thanks all. It looks like I will be wearing the wedding band on a necklace at least for awhile. I only had truncal LE until this last surgery. I did have a certified LE therapist last year but was released from those treatments. They were not close by and interfered with work schedule. I will go back if needed however. The swelling in my hand and finger went down overnight but I definitely need to watch it and I need to get fitted for sleeves etc.
I was doing so well with the LE/anti-inflammatory diet but apparently it's no longer enough. Thanks for all the support. It helps to vent and the advice is great.
Scottie
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Guys:
I'm new to all this and admit, I have not researched LE much. Bad me when I researched so much else!!! I have upcoming flights. One for work that is unexpected and sooner than I had anticipated. Two weeks.
If I have no signs of LE, do I need to wear a compression sleeve? I'm not sure I have time to have one fitted. If that is even what to do. My next flight is August -- and had planned to research this prior. I feel my MO and PS might be like: no biggie or something like that. I do not expect great info on that front for some reason.
Any advice on flying? The flight in 2 weeks is short. 2 hours. One in August maybe 5. Nothing international this year.
Thanks!!! Hugs to all.
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EastCoast - personally I would never have flown w/out sleeves & gloves - even when my docs said pooh pooh. Turns out I did have mild breast & truncal LE. Decisions are hard. But five hours is a long flight. I'm sure some of the more experienced ladies will post with things you might do to mitigate any issues as much as possible - such as hydration & making a fist & pumping your arms.
Take a look at this thread for wonderful tips.
http://www.stepup-speakout.org/
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EastCoast, my BS' NP measured me for a sleeve and gauntlet even before my surgery, and told me to buy it ahead of my upcoming flight to make sure it fit and that I could practice donning and removing it. Where do you live? Most major cities have breast cancer boutiques where you can be fitted and sold a set “off the rack" if your measurements conform. If not, go to Lymphedivas.com or CompressionSale.com, choose a color (& pattern if you'd like—Lymphedivas has over 100), measure yourself (Lymphedivas has detailed instructions) and plug in your measurements. They usually deliver within a week.
Your flight in 2 weeks is short enough that you needn't wear compression (I don't, and I have stage 0 LE, in remission from a brief bout of Stage 1 last year). For the 5-hr. flight in August, better safe than sorry. But you have plenty of time before then to get fitted, purchase your set, and exchange it if it doesn't fit.
For the record, I wear my sleeve & gauntlet for flights over 4 hrs., when working out (including cardio because anything that gets blood pumping also gets lymph pumping), scrubbing hard, and playing long sets of guitar outdoors on hot days.
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Thanks for the information! I'll get moving on my new set of BC "equipment".
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Oh, too, I'm in Charlotte, NC, and we have a boutique close by that I visited prior to surgery. But do not know if they have LE stuff. Guessing yes and I just had no idea.
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MinusTwo:
Thanks for the site! Reading now. Okay, I had BMX but only lymph nodes on one side. So sleeve/glove only for that side, yes?
Thanks, again, guys!
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EastCoast - again we're all different to you need a professional consult with an LE/PT.
My first surgery was BMX for DCIS with a 2-3 SNBs on each side. Docs pooh poohed but I took myself to an LE & wound Care doc for a consult. I had mild truncal LE on one side. The surgery for recurrence two years later was ALND on the right for positive node. They took 7nodes. Insult to injury was the radiation to that area. One benefit - the RO was the only doc who recognized LE and got me to an LE/PT pronto. Again truncal & breast but more pronounced.
So far I've managed to keep it from progressing to my arm. I always wear a sleeve & gauntlet for any flight - even an hour. And a compression bra. Yes, I probably look dumb pumping my arm in the airplane seat, and lucky not to hit a seat mate, but it's worked for me.
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