GRRRRRRRRR I HATE LE..........
Comments
-
Fitz33: I'll be interested in Binney's response when she gets back. I've just returned my second compression bra - mostly because the arms were cut too high. The one I found that fits the best is $289.00 - yikes the price went up on the Bellisse & I haven't broken down & bought one yet. So I'm wearing Danskin sports bras. They work OK and arms aren't too high, but the T-back doesn't look great with dressy tops. They are available up to 2W and 3W. Wore a new Bali Comfort Revolution # 3463 all day. No compression, but no impressions in the skin either.
0 -
hey ladies: I wear the "ahhh " bra from HSN.. the lady is Rhonsa shear.. they're t shirt bras, and knitted on a special machine, so there's no seams.. kinda like the "genie" bra; but they're much nicer.. i have em in every color.. they are sized by the size of t shirt you wear, no cup size... so, if you wear an zl shirt, like i do, there's plenty of room for swelling, but the material is stretchy enough to hold in on the swelling.. that model has no underwire..look it u: it comes in a zillion colors.. 3jays0
-
forgot to say, i put a "kimbe" swell spot in mine for truncal, and it works fine for me. they usually have a 30 day return, but tnow its till jan 30th, so you can wear, and return, with no hassle.... i just looked on her website.. they're $60.00 for 3 ; .. there's 2 for 39.00 ot 4 really pretty ones for 49.00. on hsn. good luck finding a good bra. i love these!!!.3jays0
-
3jays, would these work for someone like me who is now flat after deconstruction and doesn't wear prosthetics? The underarm and back look like they are cut higher and wide and good for truncal LE, but I wonder if it would lay flat to the chest since I don't have boobs or wear forms. Maybe if I put a tiny bit of padding. I really wish someone would make a great no cup bra like this - higher on the sides, and wide straps that are set further apart and come up high in the back like a tank. All sports bras are too tight or cut wrong for me. I am tired of camisoles all the time.
0 -
Tina, last year I went to an "Essentially Woman" conference with Binney: it's devoted to DME suppliers of prosthesis, bras, lymphedema garments. It was really educational for me--especially walking around with Binney who most manufacturers seemed to know.
Their was a weird moment when Anita, manufacturers of prosthesis, had a fasihion show with real women wearing their products.
But, I learned so much and yet retained not enough, but Binney did--and she was counseling the manufacturers on how to modify their products for real women.
We were there as invited guests of Medi who were introducing a truncal garment, that so far has not been comfortable most women.
Kira
0 -
I saw the LE PT yesterday. Everything is so much more stable now that rads are over. He measured me for a new daytime sleeve and glove (since the one I have which is only two months old is too big now and also wasn't a high quality one) and a night time one, the solaris tribute which I read about in another thread. Also said I could take the exercise program for LE patients if the cardiologist says it's okay. I just have to go back and get the sleeves when they come in. and then won't see him for six months. I am happy, but I'll actually miss him. I guess I'm never totally happy. LOL
0 -
Kay, he sounds great, and the fact that he acknowledges that you need to return in 6 months is wonderful--way too many PT"s do the treatment, and kick patients out.
I see my LE LMT twice a month--yeah, I need the TLC.
I'm so glad you're getting so much better. Let us know how you do with the Solaris--and send it back for a redo if it isn't perfect.
Kira
0 -
Oh how I would love to find a plus size bra that worked great with one good boob and a foam one but we want go there. lol
I finally got my referal for my leg. Dec. 19! I found last night that my leg hurt a lot after a short shopping trip to Walmart. I am not sure if it is the LE or I am feeling the effects now from stopping the Lyrica. I am very hopeful for this new place. I am so hoping they will look at my arm and say hey...that idiot is fitting you too tight and learn of somewhere else in my area that fits.
Hope everybody has a great weekend.
0 -
Hello All -
Newbie to this group. I'm not sure where to post this, so here goes.
I'm 4 weeks out BMX - had 4 nodes removed, so far so good. I've been measured by a PT for lymphedema, and have a little bit of swelling in the upper arm, and tingly feeling at times. I am travelling this Sunday - 12 hours total in an airplane. I don't have full blown lymphedema - should I wear the sleeve that I've been given? I don't have a gauntlet. I've heard that maybe just doing arm exercises, drinking plenty of fluids, is better?
Thanks ~ Joy
0 -
Fitz and MinusTwo, truncal compression needs can vary widely, depending on how many breasts anyone has left, where their swelling occurs, and what it responds to best. For most women with truncal swelling, a bra that comes up high under the arm is important, as the front of the axilla is a common trouble spot. But then you run the risk of cutting directly into the swollen area, so the fit has to be perfect FOR YOU. When my truncal swelling in under good control a WearEase bra or cami work well and don't cause further issues. (Tina, the cami is especially helpful for days I want to go flat, but I sure do hear you on getting very tired of wearing camis all the time.)
When I'm having trouble controlling the swelling, though, I need something to ease the underarm area so the bra or cami doesn't cut into it. I have two favorites for that. The Solaris Kimbe spot is the one I use most. It fits under my arm and compresses in the axilla and directly in front of it, though I can wear it further around the back when I'm having trouble with that area. The second is a kind of foam called a "chocolate bar," which I cut into one long piece and put into a length of arm stockinette to protect my skin:
http://www.bandagesplus.com/prd/152/780/Chocolate-Bars.html
It's more aggressive than the Kimbe Spot and will actually reduce the swelling pretty effectively. It's also somewhat stiffer, so it's very effective at easing the pressure from the high cut of the cami/bra. It reaches from front to back, so it covers a wide area, and it's comfortable enough that I forget I'm wearing it. Also shows less under clothes than a Kimbe, because it's less bulky. Both the Kimbe and the chocolate bar stay in place with just the pressure of my bra or cami.I recently bought a JoviPac Bilateral Post-Mastectomy Pad:
http://www.jovipak.com/breastpads.html
It's comfortable, has a low profile under clothes, covers me front and back, and it's light. But it doesn't stay put like the other two do. So I suggested to the Jovi people that they make some kind of short strap that would go over the shoulder and help keep it in place. They replied that they could make that addition for me for another $60
. I declined. When I get around to it I'll probably add a short strap of something soft, and we'll see how that works. I'm not sure what they were thinking -- apparently that LE patients are all independently wealthy. I do know they work with the Bellisse people and make pads to fit into the Bellisse pockets, but I don't happen to like the Bellisse much, so that doesn't work for me.Bottom line is, this is unfortunately an area where trial and error is the rule. What works for one won't work for another, and what works for one occasion is all wrong for another. We need to stay in touch with each other about what we discover, so we know what all our options are.
Just as an aside, I tried the "shrug" type sleeves and found they really pushed fluid into my chest, just in front of the axilla. Just something to be aware of.
Sorry this is so long, and I sure hope some of it is helpful!
Be well,
Binney0 -
Joy, it is controversial if women without LE should wear garments while flying, but if you have LE it's recommended that you wear compression:
From the NLN Postiion Paper on Flying:
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
Air travel presents several considerations for individuals with lymphedema and for those at risk for
lymphedema. It is the position of the National Lymphedema Network that:
Individuals with a confirmed diagnosis of lymphedema should wear some form of compression therapy while traveling by air.
Individuals at risk for developing lymphedema should understand the risk factors associated with air travel and should make a decision to wear compression based on their individual risk factors.There is also a great explanation of why you need hand protectiion with a sleeve on the lymphadiva site:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
A gauntlet will do, and they are relatively inexpensive.
With your early swelling and the length of the trip, I think would be wise to consider wearing compression--a sleeve and gauntlet.
You may have a difficult time getting a prescription for a gauntlet before Sunday, but they are sold in many DME stores, and the first one I got was at a private pharmacy that stocked them for around 20$--a Jobst will come in small/med/large and is easy to fit.
If you can talk to the person who got you the sleeve and/or your LE PT that would be ideal.
The length of the flight has been shown to be a risk factor.
The controversy is that lousy fitting compression can cause harm.
Kira
0 -
3Jays: Thanks for the info about the Rhonda Sheere Ahhh Bra. Looks sort of like the Cosabella Bralette that I've been wearing but I've paid $45 - 50- each from Nordstroms & Amazon. Of course is does have bamboo in the fabric. (which really does make it soft) http://shop.cosabella.com/Free%20Bralet.html I'll definitely check out this Ahhh bra.
Binny: Thanks for the detailed discussion about truncal LE "bras" and pads. I need more to digest this.
Wore a "real" bra all day yesterday instead of the Danskin athletic bra so I could wear a scoop neck top. Was really sore today. Hmmm. Do I see a Bellisse in store from me to me for Christmas?
0 -
Kira
Thanks for the information. I've been fitted by a PT for the sleeve, and will look tomorrow for the Jobst gauntlet. It's probably a good idea that I try to use them for the long flight.
Thanks again ~
Joy
0 -
Joy, any gauntlet will do--Jobst is easy to fit, but here is an on-line listing of gauntlets from brightlifedirect
http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets/c133_135/index.html
They have reviews, pricing and sizing. Jobst seems to have raised their price to $45.
Here's a pictoral display of how to measure for a glove--for a gauntlet, you just need wrist and palm measurement:
http://www.absolutemedical.net/medicalProfessionals/measureGloves.aspx
Joe Zuther seems to have used the same photos in his blog:
http://www.lymphedemablog.com/2011/08/23/measuring-for-compression-arm-sleeves/
Kira
0 -
Thanks a million, Kira. I'm curious - you are such an LE expert. Do you have LE, with 3 nodes removed?
0 -
Joy, I do--I was really worried about it, despite my surgeon telling me not to worry, and she was kind of rough on my tissues in her desire for cosmesis and I got a whopping case of many, many axillary webs about 2 weks post op, and actually got in with a LE trained PT--but she had me do more exercises (bad idea) and saw the surgeon--who noted I had a large axillary seroma (LE risk factor) and she asked me what to do about it--and I made the wrong choice and told her to leave it alone. Months later, after rads, she did aspirate it.
So, three weeks post op, on a hot day, I got bug bites on my arm, and my hand swelled up, and despite being in LE therapy, it has never gone away.
It happened before rads: and my rad onc denied that rads could make it worse...
It's my dominant hand, and at times it's spread to my forearm, and once: when I was wrapping to the elbow, at a LE PT's advice, I got a pocket behind my elbow.
There is a good article by AW Stanton, that people who get secondary LE, don't have robust lymphatic systems to start with, and my LE PT always looks at my puffy ankles and wonders if there's a bit of underlying primary LE.
So, I am one of the people who got it with "just" a SNB--as is Binney, Jane/Onebadboob, and others on this forum and not on this forum.
I talked to Joesph Feldman MD--head of LANA--and he feels that SNB reduced LE, and I really do think it does--but sure didn't eliminate it.
Despite being concerned about LE prior to surgery, I had NO ideal how to treat it, and leaned very heavily on Binney and this board, and did tons of research--and still managed to go through 5 LE PT's, it was horrible.
I have a wonderful LE therapist, who is an LMT, and I found her fairly early on, but she wanted the PT's involved for the cording. I still see her twice a month.
So, yes, I am a member of the swell sorority.
Kira
I forgot to add that a year ago, I fell and broke my LE hand and was in a cast for 6 weeks, and it set me back, but is a lot better now. I was being a good LE patient, and had my computer case on my right shoulder, so I reached out to break my fall with my left hand--and fell hard on concrete in the dark.
And, here's a bit of irony: my breast surgeon and I had a pitched battle about my LE and her refusal to help me treat it, and through a weird twist of fate, I now work in a radiation oncology office, and just saw a patient from my breast surgeon with significant LE, and she said that my breast surgeon told her she was glad she was coming to our office for rads, as I knew all about LE and could help her.....So now I'm an asset??? Before I was just an unfortunate abberhation of a surgical complication?? LE, the gift that never stops ticking me off.
0 -
Good grief, Kira, what a story. I'm very sorry to hear of your troubles with LE, on top of BC - more than anybody should have to deal with. Maybe one of the very few positives is that your surgeon is now better informed about LE and is quicker to suggest care for it?
My surgeon, a well respected good surgeon, and his nurse, both said that with 4 nodes removed it would be very unlikely to have problems with LE. And this surgeon has a machine that somehow analyzes lymphatic fluid to diagnosis LE - it seems that he would be a little better informed?
Maybe this is crazy, but I started feeling a tingling and coldness in my affected arm immediately after a fine needle aspiration. Using US, the radiologist poked around for awhile, getting several biopsies. It was pretty uncomfortable, compared with others that I've had. I think that several nodes were messed up then, and I felt it.
I did find a glove, and will travel tomorrow fully compressed. Will let you know how it goes.
Thanks for sharing your story and for the recommendations.
Joy
0 -
ok..need your expert advice again!! I now feel another cord, surgery was last oct 2010, radiatin ended May 1 2011 (had chemo too that ended in Feb of this year). what's with the two new cords? they appear to just be under my arm..I do the exercises and breathing pretty faithfully a few times a day. never had any rom problems at all..felt tight and painful under my arm and I felt another cord (discovered one a couple weeks ago) I have an appt with P/T who is very familiar and can treat LE... does cording mean its LE or that I'm going to get LE? any suggestions while I wait to see her? I read on one site moist heat and doing stretches, but I don't want to over do it.. help!!! thanks!!
0 -
Adding this: I recently had a biopsy on my scar tissue on my breast, everything ok, would this cause the cording?
0 -
thanks, gals, as usual, you're a wealth of info.. the ahh bra is so soft, and comfortable, but its so different for all of us:.. a special thanks to Binney for those links.. i think they;ll be perfect for the truncal to "dog ear" scarre are, that does swell up... 3jays0
-
msjag: cording can come on at any time. Although cording is a risk for LE: the only study that demonstrated a strong association was one that looked at early PT for LE, and the women who got it early in the post op phase had more LE--but cording has not been well studied, and all the medical articles say it's "self limited and resolves spontaneously", while the PT and LE literature acknowledges that it is a risk for LE and often the cords linger, and can recur.
That said: it's a risk for LE, but it's also very, very common.
Perhaps the biopsy did trigger it. I've had cords come back with exercise or no obvious reason.
The best course of action, IMO, is to do gentle stretches to stretch them out and to see your LE PT.
Couple of stretches:
1)one is to just stretch overhead. Jodi Winicour says to link your thumbs as you stretch to keep your arms straight.
2)The other is to lay on the bed, arms overhead, and bend your knees and let them fall to the "good" side,
3)the other stretch is "child's pose" with arms stretched in front of you.
Stretch to the point of pull, and hold it--avoid pain.
Sometimes stretching is easier after a warm, not hot, shower.
Let us know how you're doing
Kira
0 -
Kira, as always you are wonderful and full of info..thanks...today I can barely feel them but I know they are there, can't see them though...I will do the stretches..one question on the second stretch do you let your arms fall to the "good side" or your knees? thanks so much for all your info. I will find out tomorrow when my appt with P/T is...she did a base measurement for me in July, so I will be able to tell if there is any swelling at all....so glad I did that, it certainly was due to all the support/advice from all of you.
0 -
Msjag, I looked at my lecture notes and I couldn't seem to upload the photos, but there are two versions
1) lay on the bed, hands over head, bend knees and let knees go to "good" side
2) lay on the bed, hands behind head, bend knees and let then go to "good" side
I'll see if I can somehow copy the powerpoint slides.
Hope that helps.
Kira
0 -
Well I want to encourage all you ladies to continue your exercises etc. I got lazy earlier this year, and not only stopped exercising -which i replaced with my pump- but i also stopped wearing my compression garment. i started water aerobics and thought, i guess, since i was "stable" i could just ignore my underlying problem, maybe i thought i was cured of the lymphedema??? well, here i am WRAPPED again ... i havent had to wrap in over a year. i am praying my cellulitis doesnt return. i havent had 2 b hospitalized since march. i am an IDIOT. i cant believe my ignorance. my PT knows nothing about lymphedema. she did read the link i sent her, and is helping my frozen sholder and back troubles, also i have not had any chest spasms since i began with her. but even though she has her PHD and did read the link, she will not get involved with my wrapping. she did try to get my compression garment on me the other day. and it was WAY too small. so, i asked her to measure my arm so we could get a baseline, she did 3 spots, my left is 2.5 cm more than right, not terrible, and certainly not unworkable...SO, i wrapped last night, and will unwrap at therapy, to show her what good camn be accomplished in a mere 12 hours. i hope to be much better this time next week...hugs to all, terri (typing with one hand)
0 -
PS I am trying to get better without driving all the way out to my lymphedema therapist. but WILL make an appointment with her next week, for after Christmas, if i dont have a significant improvement with this PT i am working with...
0 -
Sorry to hear of your troubles, but thanks for posting the warning. I have had LE since October, it was pretty bad during radiation. If I leave myself without being wrapped or a sleeve for a couple of hours, I can see swelling starting. My onc asked me how long the PT told me to wear the sleeve/do the wrapping. When I said forever, she said I would get to a point where I didn't have to any more. Told me the PT wouldn't like her saying that, but she had to give me hope. She was correct, I told the PT, and he wasn't too happy about it. After I get my new garment, I won't see him again for six months. He told me not to think about wearing the garments forever, just to think about it in six month increments and we'll see how it goes. As much as I love my onc and think she is very up on everything, i think a lot of the swell sisters here are right. Almost no doctors really have an understanding of LE. It's great to give me hope, but she needs to be careful of giving bad advice.
0 -
Kay, I SO agree with your PT: take it in 6 month intervals, and as much as the onc wants to give you hope, to give you misinformation isn't helpful.
I'm going to predict that things improve. You're compliant, you're coming out of a period of high inflammation and risk and you have a great PT.
So many of us get asked about when we're going to "get over" our LE: and the answer is, never. We can control it, get it in remission, but it will always be with us. And that doesn't mean we can't improve.
Kira
0 -
Hello All -
I'm back home - long plane ride, 12 hours in total with a layover. I wore the compression sleeve and gauntlet and I've had no inflammation or swelling so far. I drank lots of water and did the crazy airplane lady stretches.
Thanks Kira for your insight and recommendation on getting a gauntlet, definitely the thing to do. Now to find a lymphedema specialist here in Budapest. I'm realizing that even with minimal swelling, I will need to be vigilant.
0 -
Joy, so glad you're back with your family and the flight went well. I'll bet Binney has some contacts in Budapest--seriously, she seems to know how to access treatment all over the world.
You're a Pilates expert, and we talked to a PT, Naomi Aronson, who strongly recommends Pilates for breast cancer patients.
Please let us know how you're doing.
Kira
0 -
Joy, glad the trip went so well!
I sent you a Private Message.Be well!
Binney0
