GRRRRRRRRR I HATE LE..........
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(((((((abby))))))))))
(((((((Lisa))))))))
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Lisa, I'm so sorry. You're amazing, and I'm rooting for you!
Also praying, and sending hugs,
Binney0 -
kittydog,
LE is caused by an accumulation of protein rich fluid. Diuretics can draw off some of the fluid but it does not draw off the proteins. The proteins will continue to collect fluid as soon as possible. This also leads to a higher concentration of proteins which can lead to cellulitis and more fibrotic tissue. It's the proteins in the lymphatic fluid that is causing the problems if they can't be removed. That is why we do the MLD. It moves the fluid and the proteins thru the system. Diuretics just move the fluid to the venus system to be taken away and the proteins remain.
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This thread makes me so sad, but so grateful that I have you women to lean on. Thank you.
Faith, I am sorry. That stinks so bad. And Laura, please don't ignore your LE. I was in the land of Denial for just a month or so and wound up with cellulitis. Having LE sucks really bad. Having LE and cellulitis is worse. I am sending good thoughts and prayers your way...your posts just hit home to me.
Lisa, I am praying for you, too. Having LE and another cancer diagnosis sucks the worst. I'm hoping you'll be back to just stupid LE before too long...please continue to post and let us know how you're doing.
Love you guys,
Suzanne
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I'd love to print this thread off and hand it out to people in my life (including Drs.) who think LE is not a big deal. It has caused indescribable changes in my life. And yet you all have described it so well. It takes a group effort.
Gentle hugs all.
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A big thank you to everyone for their kinds words and support
) it is very much appreciated!0 -
I just reread my post to Kittydog about using diuretics. I didn't mean it to sound like we can never take a diuretic for other conditions. I've been on a mild diuretic for years for my BP. It doesn't seem to affect my LE one way or the other. It's when we try to use a diuretic to reduce the swelling from the LE is when we run into big problems. What I found to be really interesting was when I took the steroids before and after chemo treatments, I didn't have any LE swelling at all in my hand or foot. But then the steroids have their own set of lovely SEs and I wouldn't think I'd want to use those as a way to keep LE at bay.
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Firni Thanks for the info. I didn't take it that you were saying I couldn't take them. I am taking Hydrochlorothiazide 12.5mg. It is the lowest dose they can give you. I have problems with ace inhibitors so they thought they would try this route and so far it is working. I have only had a couple of high checks and that was when I was on radiation. yeah
Thanks for the warm but yet unwanted welcome!
I am not looking forward to wearing my sleeve today.
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Hi all you wonderful people...for some reason, I have been following this thread. Sometimes (well, many times) I think the Lord guides you places for some reason. I think I just discovered the reason. I have let you guys know my fears of this and the most recent posts about the fluids and proteins without the lymph nodes to process is a likely cause of LE made a light bulb pop.
By the grace of God, after my surgery, I had extreme complications with fluid buildup in the vacant breast cavity (for lack of a better description). I was going weekly for months having 400 to 700 cc's of fluid drained from the area, a couple of times, twice in a week. It got so huge at one point that the stretched to its limit skin actually burst and totally soaked me on my way to work. I had to shop for a new top, pants, bra, underwear and socks (shoes were salvagable) before going to work. I worked 45 miles from home so there was no turning around and I had to call them - thank goodness for my gal Tonya - she lived in the area and directed me to a store that was open at the early hour.
Anyway, I had to wear sanitary napkins in my bra - 3 heavy duty ones at a time - both as a filler since I couldn't finish the reconstruction but as an absorbent as it leaked all the time and still I had to be drained.
I now believe that is what may have saved me from LE. It was an eight month ordeal from hell but likely that emptying of fluid in that manner - would have been the fluid build up in the arm and it would not have been mild LE but pretty severe. The plastic surgeon did indicate it was lymphatic fluid but never explained anything further as he had never seen anything quite like it. When my new PS for the new surgery due to the recurrence saw the my old charts, he was astounded but again, no mention of an explanation.
Thank you ladies and bless you - I will still watch carefully of my arm but ya'll have helped solve an almost 12 year old mystery.
I wonder if there could be a way to position the drains better or insert a semi permenant shunt so that the fluid does all flow out at the breast and stay open for longer rather than hurry the healing - it would be quite a pain in the ass to endure the months of drainage but if it could prevent LE from occurring...from what you have posted here in this rant-ville, 6 - 8 months vs forever seems worth it.
Now, where do I go with my experience to get someone to look into the possibility? Point me in a direction, if you can!
Hugs all around...LowRider
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Susanne.. thank you ! I am not going to deny it anymore ( Binny herself, has tried.. over the past year.... to " gently" get me to accept this in PM's...thank you Binny) .I called my LE therapist today... as I have worked two days this week... and I am doing all things good ( for treatment of my LE) and I keep swelling... I need to ask her... if ladies like us can even GET DISABILITY if we cannot do our jobs anymore.. OR do we need to take a job making $9.00 an hour because we CANNOT work in our field anymore.... but NO ONE CARES...GRRRRRRRRRRRRRRRR...
SHARON... do print this off and take it to your Dr. Why not!
LowRider.. I have no info for you on this.... Kira and Binny.. and now I know Firni is really educated in LE.
You know.. I have a question:
Why do you all hate to wear your sleeves? I hate WRAPPING with all the wrap, it mostly hurts after an hour...... BUT.... I love wearing a compression sleeve... it makes my arm stop hurting most days. I put it ON to get relief. I could wear it 24 hours a day. Just wondering. I did get fitted for it... and I just wear a small, as I am a small girl... and it is firm fitting... but by no means too tight... it feels GREAT! I wear it daily at work. I have to.... If I do not.. I keep swelling..... The ladies I work with cannot BELIEVE what my arm does.... it just keeps growing through the day.... it freaks them out.
Peace Ladies.
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estepp - I like wearing my sleeve too. It's the lowest compression, though. I think the higher the compression level the more uncomfortable it would be. I feel better when I wear mine.
I'm so sorry you're suffering like you are and you're job situation too. Know I'm praying for you.
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Dawn... TY... so kind !!!!
What is a higher or tighter compression... and is it better to be tighter?? I will do whatever... I have to... WE all do.
TY
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I'm a newbie, so someone can explain it better than me .. but your LE therapist is the one who decides that level. When you go to the websites for the sleeves it will say level 1 (15-20) or level 2 (20-30). Usually, the worse the lymphedema, the higher the level. Mine is mild and its only in my fingers. My therapist wanted me to use 20-30 on my gloves and then the lightest compression on my sleeve.
I haven't done a lot of looking for the vest and bras, but those seem to be only in the one level. It's in the gauntlets/gloves/sleeves that there are differing compression levels.
I may be wrong ... someone will correct if I am.
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Lowrider, I snorted so hard when I read your post...I can't decide what is worse...having to wear sanitary napkins in my bra for 8 months or having LE for life...I 'guess' having it for life, but I don't know. You should at least get to wear an honorary LE badge for having to go through that. That is awful!!!!
Laura, I don't mind actually wearing the sleeve, I mind people asking me about it. And I'm actually getting okay with that. It just gets old. But I need to quit whining about stupid LE...I could have been like Lowrider and had fluid coming out of my chest for 8 months. That is still blowing my mind.
I get so tickled over this new club that I'm in - the cancer/LE club. Until you get your membership pin, you have no idea the crap that women with breast cancer have to endure. And I think that's what bugs me about people asking me about my sleeve all the time, and saying things like, "I never heard of that", like I just made it up. I hate stupid cancer and LE, but I am grateful for one thing...it has made me very aware of the struggles that others go through, and how hard some people with physical disabilities have it.
Regarding the compression garments, I wear a class II, but I am pretty sure there is a higher compression class than that. I just don't have to wear it. My LE is in the moderate class.
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Here is a wonderful explanation (thank you Binney!) of compression class of garments from the StepUp-SpeakOut site:
"Millimeters of mercury" and "compression class"
Unfortunately, size is not the only consideration in fitting a lymphedema garment. The amount of compression your garment applies will vary according to your specific needs and the stage of your lymphedema. This compression level is measured in units called "millimeters of mercury." It's written in scientific shorthand like this: mm/Hg. (The "mm" stands for millimeters, and the "Hg" is the chemical symbol for mercury.) Compression garments are ordered by "compression class," or the range of compression you need, stated in millimeters of mercury.
Here's a run-down of compression classes recognized in the United States, along with their usual uses (which may vary with individual circumstances):
Class 0: 15-20 mm/Hg - used for those at risk for lymphedema
Class I: 20-30 mm/Hg - used for those at risk, or for early or mild lymphedema
Class II: 30-40 mm/Hg - used for moderate or severe lymphedema
Class III: 40-50 mm/Hg - used for severe or hard-to-control lymphedema
To add to the confusion, European compression classes differ slightly from their US counterparts, like so:
Class I: 18-21 mm/Hg
Class II: 23-32 mm/Hg
Class III: 34-46 mm/Hg
There is a Class IV as well, with higher numbers of millimeters of mercury, but they are rarely used for arm lymphedema.
The fabric used in your garment may be soft (like Juzo's "Varian Soft") or sturdy (like Jobst's "Elvarex"), or somewhere in between. It may feel flexible or stiff, smooth or rough. All these factors add to your sense of the fit of your garment, and to its effectiveness for you as well. An experienced fitter takes fabric choice into consideration in order to provide you with the garment best suited to your specific needs. A compression sensitive person may need a softer fabric to prevent her fingertips from turning an unhealthy shade of purple, while a person who tends to develop fibrosis easily may do better with a firm and sturdy fabric -even if they both require the same compression level-
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Hello Ladies. I've only posted here once, but I've been reading along, and I have some questions if you don't mind. I have LE in my left arm, breast, and back. I've been seeing a PT, but I'm just really scared of this and only moderately educated about it so far (but intend to educate myself thoroughly).
1) What is a gauntlet?
2) Why do you sometimes use bandages and sometimes compression garments? What's the difference?
3) I'm still in chemo and having fluid retention SE. My PT says she's hopeful that after I'm done with chemo I will see a decrease in swelling. Was that true for any of you?
4) Are there medications that help that don't cause weight gain?
5) What is PMPS?
6) Can you recommend any good books/workbooks/DVD's?
7) How about acupuncture?
8) Are there special yoga classes for LE sufferers? And have any of you been helped by them?
Kira: Thank you immensely for the Dr. Feldman referral. Depending on how things go as I get through my chemo, I may very well pay him a visit.
Thank you in advance for any answers/thoughts you can provide, and for letting me join the club!
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Another day, another appointment and another day in compression bandages. Day 26 and counting. I have therapy three days a week. On my third appointment I was measured and was able to make an appointment for a fitting. Yeah!! or so I thought. A week to get an appointment for the fitting, another week for the sleeve to come in. I wore the sleeve the rest of the day and night (yes, I slept in it). Better late than never I found out there are night garments. BTW, it didn't fit. My brief sense of freedom from the bandages was a welcome one. Another week for a fitting (this one custom). I figure if the stars align and God is smiling down on me I should have my new sleeve a week from today. In the mean time still counting and still in compression bandages.
I have an appointment this morning....my plan is to take the wraps off. Take my first shower in 26 days without that plastic glove that goes up to the shoulder to keep things dry...floss my teeth without a mouthful gauze (fingers are wrapped).....fix my hair...and last, but not least...actually get mascara on my eyelashes and not the surrounding area. These bandages are driving me crazy.
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Hi Wherria...I'm still new at LE stuff so I can't help you, but I'm sure someone be along shortly who can. Welcome.
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Yikes, Scooter! Once you know how to wrap yourself you can remove it daily for showers and a welcome breather and re-wrap afterward. In fact, that's a much better plan because with wrapping, the first eight hours see the greatest reduction. (So at the LE in-hospitals in Germany they re-wrap every patient every eight hours). So if you haven't been taught that, insist on it -- very important to know how to do it yourself because you'll use it for flares, and for avoiding them when you travel or have heavy work to do.
Estepp, I so understand the denial, and I'm so sorry LE refuses to be denied!
There are women who have gotten disability with LE. It isn't easy, but then qualifying for disability is never easy so no surprise there. They will deny it the first time, then you go get a lawyer and usually on the second go-round it's accepted. You can contact the National Lymphedema Network's Patient Advocate, Bob Weiss, for more information on applying for disability:
LymphActivist@aol.comWhen you're at work, are you noticing any one procedure that's worse than others for making you swell? If you can figure out what factors are at work there you may be able to make some adaptations that will ease the problems you're having. If your LE therapist is an OT she should be a good resource for suggesting ways to change what you're doing enough to make it possible to continue. When I wake up in the middle of the night I lie there thinking about you and wondering if there isn't some way to isolate your various tasks and make them less stressful for your arm. Sometimes just varying the way you use your arm will relieve it. Or stopping a moment and raising it in the air and slowly making a fist a few times, along with a few deep breaths. Just wishing there were some solutions for you that could keep you doing your job!
As for why I hate wearing sleeves, it's just because I'd rather not, and I don't have that choice anymore!
It is NOT better to wear a higher compression than you need. In fact, it's almost always worse. Too much compression results in "rebounds," where your arm reacts by swelling MORE. This is why, if you're wrapping your own arm and you're frustrated and upset when you do it, you can wrap it too tight and end up worse off. Lymphedema is an assertive bugger.
Wherria, I love your avatar! Who is it?! Here's a stab at some answers to your questions:
A gauntlet is a fingerless glove. It covers the palm and has a thumb, but no fingers. You can use it if you don't have big problems with hand or fingers, but once your hand is involved you need the gloves. Gauntlets are obviously easier to fit (no finger measurements), and they give you a lot more sense of freedom, so they're a good thing if you can get away with them.
Bandages are what you use (and learn to do yourself) when you need to REDUCE swelling in your arm. The layered short-stretch bandages help encourage lymph flow and also keep it from returning. The sleeves and gloves/gauntlets don't generally reduce LE, but only help maintain the fluid loss from MLD and wrapping. Night garments mimic the effect of bandages (though not as flexibly), so some of us can use them after the initial therapy instead of wrapping our arms every night.
I didn't get LE until well after chemo, so I have no experience with that, but there's every reason to believe that. It's frustrating to have to wait, though, yes?
There are no medications that have been shown to help with LE, and of course there are some that make it worse in some people. Diuretics are especially not helpful, since they remove the water but not the big, stubborn protein molecules. There's some slight evidence that selenium (in Brazil nuts) helps, but because you can overdose on selenium it's recommended that you eat the Brazil nuts (no more than three or four a day) instead of buying the supplement. I eat them everyday and can't say I see any improvement, but I like them! Also fresh pineapple has...uh, I'll think of it
...something-or-other in it that's supposed to be good for swelling. So if you like it, there's every reason to enjoy it often and feel very righteous about it!PMPS is post-mastectomy pain syndrome. There's a loooooong post about it somewhere on the bc.org boards, so you can do a search for it. I think it's very likely that much (but certainly not all) of what's seen as PMPS is actually truncal LE, which can be very painful, and almost never occurs to any doctor to diagnose, much less treat. Reducing the fluid in the chest or breast (even if you haven't perceived any swelling there) usually reduces truncal LE pain.
Fortunately there are some good resources available. One very useful book is called, "Lymphedema: A Breast Cancer Patients Guide to Prevention and Healing" by Burt and White. The Lebed DVDs are wonderful for LE -- and they're funny too. Kira tells me they're online, but ordering your own is easier, and they're not expensive. There's also a book for caregivers called "Lymphedema Caregiver's Guide" that's available from LymphNotes.com or the NLN (or Amazon). If, say, your DH isn't taking your LE seriously or thinking you're making way more fuss than it's worth, get him one of these for Christmas -- it's big and thick and thorough, and it'll make a believer out of him!
We've got a recent thread here about acupuncture -- it's probably still on the first page if you'd like to look it up. There are studies being done at the moment, but they're not completed, so for now there's no evidence that it helps. There's one very small study that seems to indicate that it doesn't hurt, either (as in, no cellulitis from it), but that's a bit iffy since it would depend on both the acupuncturist and how your body handles it.
There are yoga classes for women who have had bc, and some of those even take into account the LE risk from some poses. And there are yoga folks who know about LE and can adapt it for us, but those are few and far between. The deep breathing and gentle stretching is a real positive, but the poses that place weight on your arms and hands can be a problem.
Sorry to be so long-winded -- good grief!
Be well,
Binney0 -
Just to add for Wherria: did we give you the link to the stepupspeakout.org site? I think a lot of answers to your questions may be there:
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
http://www.stepup-speakout.org/Lymphedema_garments.htm
Binney is amazing, isn't she? Jane aka OneBadBoob, created the site with Binney to capture the advice she gives and then it just grew....
Kira
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Just to keep the record straight, myself, Binney AND KIRA created the StepUp-Speakout site.
And we all hope that it gives all of us "swell girls" loads of info on how to live well with LE.
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Wow! Thanks everybody, especially Binney, for the information! I'm scheduled to be fitted for a night garment and gloved sleeve tomorrow. Actually, I don't know if my doc prescribed a glove or a gauntlet. I guess I'll find out tomorrow. I had a regular sleeve (down to the wrist), but then my handed started swelling every time I wore it, so she prescribed a new one. Does that mean it's getting worse? My PT says the night garment will really help. Do y'all think that's right?
Thanks again. May everyone have a skinny arm day!
Whitney
Oh, my avatar is my dog, Marlow. He's a Bearded Collie, and the sweetest boy. He's named after the town where a lot of my father's family is from in Oklahoma. Sadly, our other dog, Bixby (named for the town where I grew up, also in Oklahoma), died a very sad and unexpected death about two weeks into my first chemo Tx. He was a Beardie too, but black and white.
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Thanks for creating that site. I go there often. Thanks for all the update stuff yall did yesterday. See I told you I still visit there often. lol
I hate my sleeve because I am still convince they are trying to compress to much fatty arm into to a sleeve that is to small. Juzo Size 3 for an arm that measure right at 17 inches in the middle of the forearm when it is swollen. The guy today just wanted to say that it is rolling and appears tight because of that reason. uggg I want use them when I need a new one. There are two others company's here that will fit for them.
On the other hand my night stuff came today and I will get to try it out tonight. Hopefully that is going to work out. I really don't want to wrap next week. Rather my DH wrap. I just can't do it once I hit the elbow. My frozen shoulders and torn rotator cuff just want let me do it.
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I have been reading this thread from the beginning and now would like to interject some things.
Whitney, If you are using a sleeve without a gauntlet/glove, the sleeve will push the fluid into the hand. I am surprised that they didn't give you a gauntlet/glove along with the sleeve. My doctor sent me to the LE therapist and the LE therapist is the one who decides what type of therapy sleeves/gloves that I need not my physician. The clinic actually orders the garments and sells them at cost to the patients and doesn't bill the insurance for them. I get my gauntlets for less than 15 each, if I tried to get them at the medical supply store they would be closer to 25 each.
I have been out of work for a month (job cutbacks) and am not wearing my gauntlet consistently since then and my hand is slightly swelling more than normal. I need to get the wraps out and try wrapping again at night and wearing my gauntlet every day. I thought since I wasn't using the keyboard as much, I didn't need to wear it a much.
Sheila
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I JUST GOT MY PORTFOLIO BACKKKKKKKKKKKK!!!
No kidding. Two weeks to the hour!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dear Husband just walked into the kitchen with it behind his back, looking like he'd eaten a cow.
I have been down on my kneeeeeeeeees in THANKSGIVING!!!!!!!!!!!!!!!!
For a while I just had to lay on the ground, I was seriously overwhelmed.
xx00xx00xx00xx00xx00xx
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That is awesome, Faith - congrats!!!!
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faithandfifty - AWESOME!!!
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GRRRRRRRRRRRRReat news!!!
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Faith that is terrific news. It's like getting a piece of your life back. Waaaahooooooo.
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What a relief....so happy for you...
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