GRRRRRRRRR I HATE LE..........
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Melanie_Ann, that is the whole point, to teach the patient to wrap and do MLD themselves. Unless the PT is going to move into your house...
It's a bit disconcerting that she only has three patients who wrap.
A while back, Guenter Klose published a page on tips for self management, I'll bump the thread, and it has a link in it for self care that is very good.
Why isn't this stuff easy?????
Kira
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Melanie Ann - I have been following your experience on this thread over the past several minutes and was so ticked off for you (Thank you, tamox.) and am so glad you got the help you needed.
LE is not easy, but once you learn how to take care of it yourself, it's a big relief. That was the worst for me - looking at a big swollen hand, and not knowing how to treat it or what to do is scary. A good LE therapist will teach you the tools to handle LE. If this one is not able/willing to do that for you, move on to another one. You need to learn to do this stuff yourself so that you can self-manage.
Hang in there - you are such a cutie in your photo!
and Happy happy bday!!!!Suzanne
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Just came back from my LE therapist....................she told me after seeing her for only 5 sessions I have gotten my arm down to below 5% and will be ready for a sleeve within less then 2 weeks.................glad I caught it early...........thanks to me and my RO...............Now on to the next step...........good luck ladies who are still wrapping.
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Ducky,
I still wrap at least a couple of times a week (even though I use a nightsleeve) just because it's the best thing in the world as far as helping my arm - I thank the Lord for wrapping!!!
But I definitely don't miss the days of having to do it every day - no fun. Of course, as soon as I flare, I'm right back to it - it just works so well for me.
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hey grrr gals...miss my computer and miss all'yall.
Life is good...still getting used to being soooo blonde, but I feel like it distracts from the sleeve.
Got measured today... upper is a lot better, hand is slightly but steadily worse over the past few months.
It's like a see saw!
We need something that really works!
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Happy belated Melaine_Ann and thank you ladies for your support. I'm seeing a new LE PT next Wed, ordered a compression bra that I think looks good and a breast binder. Gonna check out a swell spot at a specialty shop on Sat and get recommendations for other PT's. This phase of BC is quite a journey as well. (1 yr post lumpectomy)
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Faith Follower...what is a breast binder?
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All you ladies who wrap: Questions!!!!
1) I found some youtube videos showing how to wrap the hand and arm. Is it possible to learn how to wrap from watching a video? Here is an example of what I've found:
http://www.youtube.com/watch?v=eAKlpWRkMjI&feature=related
http://www.youtube.com/watch?v=FzPJ1ulI3UU&NR=1
Are there other resources out there that can show me how to do it? Any other videos?
2) Where do you order the bandages? What kind/brand do you use? What size do you use on your hand/fingers? What size should you use on your arm?
3) If you wrap your hand/fingers should you also wrap your arm?
4) I swell at night while I sleep ... does that mean I should wrap every night?
5) On the videos I've watched there is a stocking over the arm ... is that necessary? Where do you get them? What are they called? Is it a no-no to put the bandages directly on the skin?
Thanks you all for any input/advice you could give me. I'm trying hard to work it our financially to see the therapist I saw in the fall. I mentioned wrapping to her then but she seemed reluctant to teach me, so even if I go back to her I'm not sure she'll teach me. I really feel like I need to learn to do this ... my fingers are not going down ... whatever I do there is fluid in them. I need help! Thank you in advance.
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Dawn-Hope, all the videos I've seen are incomplete--like they don't wrap the hand.
You really should have a therapist teach you how to do it: there is a danger of doing it wrong and hurting yourself. The key is to create graduated compression: higher down low, and lighter up high, and it takes learning and being taught.
Everyone does it a bit differently: for me
I use stockinette on my arm first (very important step), then I have some foam cutouts for my hand I put on my arm and hold them in place with artiflex (a padding of cotton), then I wrap my hand and fingers with gauze, and then I apply a thin roll of foam, and then the short stretch bandages.
I use 5: a 4 cm on the hand, a 6 cm on the hand and forearm, and 8 cm up the arm and two 10 cm.
I used to do a lot of orthopedics in my work, and figured "I know how to put on a cast, this will be a piece of cake." Well, it was NOT! It has taken help from my therapist to do it right. And at one point I was bandaging too tight and hurting my arm, and we had a remedial session.
Here is a handout that explains bandaging--but they use artiflex as padding, and I use the comprilan foam as it's more comfortable, and indestructable.
http://www.srmconline.com/Rehabilitation/Pages/Lymphedema.aspx
The first LE therapist to bandage me: Vodder trained: wrapped me so tight, my fingers turned purple and I was nauseated with the pain. Then she wrapped me without a finger wrap and my hand blew up. My therapist does not believe--and studies show she's right--in pulling the short stretch tight, she adds more layers for more compression.
Bandaging is an art, and we can hurt our arms and hands and trap fluid and chafe our skin and we need someone good to show us how to do it.
Oh, and swelling at night while you sleep indicates the need for either bandaging or a night garment.
Sorry it's so hard, but once you know how, you have a powerful tool.
For swollen fingers, I frequently, if I'm home, will do a gauze hand wrap/finger wrap, instead of a glove. More comfy.
JoAnn Rovig sells an old video that shows wrapping--it's on her site (jovipak) and the NLN site.
Kira
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Dawne, I'm sorry I've forgotten (can I claim LE-brain?
), but could you refresh my memory about what you're doing for your arm and hand during the day? Do you have garments? Have you learned any self-MLD, and if so is it working? Are you able to elevate your arm at night on pillows?If you're not using anything on your hand at night, an Isotoner therapeutic glove might be a fairly inexpensive solution:
http://www.totes-isotoner.com/product/id/101751.do?CAWELAID=590785858And for your arm, Target sells a brand of sports shirts that are cheaper than UnderArmor but they're the same kind of thing. Buy it a size smaller than you'd normally wear (but NOT uncomfortably tight!) and wear it inside out so the seams don't irritate.
Learning wrapping takes supevision, unfortunately. And if the therapist you're saving up for isn't enthusiastic about teaching you, maybe you can find someone else who is.
The price of LE -- GRRRRRRRRRR!
Gentle hugs,
Binney0 -
I just got home from my therapist with my new sleeve and glove and they fit! After 13 weeks of wrapping (9 with a not competent therapist) I feel like I am floating! She also helped me find a tank at K-Mart. With the tank and her kineseo taping me I have had no trunk pain for two days! I still have to wrap at night until my jovipak comes but life is still good! My goddaughter and her 2 yr old come for a visit this weekend. I will get to do things without the bulky wrapping and can wear my regular clothes. Aquarium, Dollywood, Dixie Stampede, here we come!! Did I say life is good? Becky
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My therapist likes the isotoner gloves too. Been awhile since I heard someone mention that.
I'm liking the Spanx I picked up from Von Maur. Still feels like you're wearing a corset or girdle, but, they look nice and don't ride up until about after 8 hrs of wearing them
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hey grrrrrrls....I am back in NYC and have internet!!!
Here is a thought...as I walk around NYC and see literally thousands of people, how am I the only person with LE...or a garment on at least. I have seen them at the cancer center but only there.
I see my radiation oncologist for the first time since rads this week. She was quite dismissive of my breast swelling, and LE concerns. My PS feels she should have something to say about this.
Should I say anything?
I am going to go to the fitter this week. I think I really want a black barton-carey one piece...it's not the most effective garment...but it is the least medical looking. I will probably order a beige bc glove and a beige juzo sleeve. Maybe a beige BC sleeve as well.
@BeckySharp YEA!!!! So glad you can get out and enjoy life!!!!
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Becky, yahoo! You sound soooooo good!
Inspiring!Cookie, I think a lot of people with LE stay home.
Y'know?As for your rad onc, smile, flash your arm garments, and hand him a copy of the "Essential Information for Healthcare Providers" page from StepUp-SpeakOut:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmEducate a doctor; save a Lympher!
Be well,
Binney0 -
Binney, I may just do that.
I actually tried to hand her articles and she kind of blew them off. To be honest, she was not my favorite doctor, but after all the chemo/no chemo drama I just went with who they gave me.
Don't get me wrong she's a MSKCC quoted in the Times type..I get the feeling she thinks she writes the articles instead of reading them.
If I only knew now what I did then, I would have been pickier about Rad Onc, but after months of debate over whether I should have chemo I was just worn out.
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Tonight my hand has swelled up! Today I was helping my mom do a yard sale at her house, we had pop-up tents up to try to stay shady and the high temp was around 85. I admit I didn't drink enough water but I did wear my gauntlet. I took my gauntlet off and I could see indentations where it hit at the base of my fingers and the seam down the thumb, It has been about 1 hour since I took off the gauntlet and the indentations are not as noticible. I am drinking plenty of water tonight before I go to bed and hopefully it will go down by morning. I haven't wrapped in many months because the swelling was under control!
Sheila
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Sheila, that rots! Just when you think it's going to behave.
Sounds like it's coming down nicely with getting cooler, hydrating and elevating.
Still stinks.
Kira
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Sorry Sheila
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okay, and I'm still chuckling over she thinks she writes the articles instead of reads them, that totally tickled my funny bone
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Oh Sheila--I hope your hand does go down tonight.
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Cookiegal, I'm willing to bet you a brownie (or a cookie!) that I know which MSKCC radiation oncologist you saw. KS1
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Cookiegal, They must have an institutional policy on this! When I developed LE my MSKCC BS told me that she'd only had 3 patients in her whole career who'd developed LE and she was sure I wasn't the fourth. My MSKCC PS rolled his eyes, said "it wasnt me... I didn't TOUCH your axilla." When I asked for his help in getting started with treatment, he rolled his eyes and said, "....that's SO not my department"!
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Jerusha - That's such BS! I'm so frustrated tonight because I can't get the help I need. Really, what other condition is there that we know we have a problem but the docs completely blow us off ... when we finally get to a therapist who can help us ... we have to tell them what we need and we have to practically beg them to give us the skills that we need to manage it?! We've talked about this before on this thread ... but it leads one to insanity!!! So sorry this happened to you and to so many. I'll end as I started: It's BS!
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Well I am quite fluffy tonight. I ended up having to take my sleeve off because it was hurting me more than doing going by 10pm. I am all so glad that Kids Kamp is over and I survive. I am hoping with staying home next week and babying my arm, I can get it back down. Kids Kamp went great, Our highest attendance night we had 1246 kids between the ages of 4-16, I knew I was very limited so they put me in crafts sitting near a fan. Our warmest night was 99 degrees. This is a free camp for kids in our community.
I too have an impression tonight with my gauntlet...which means not good for me. I rarely get hand swelling. Good luck everybody getting their swelling down.
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Jerusha--That is SO not my department!!!!!!---what flat out arrogance/ignorance.
So we can add Slloan Kettering to Johns Hopkins and Dana Farber/Brigham and Womens as institutions that deny the reality of LE.
Just FYI: we wrote a page for providers (even those who think they wrote them, and don't have to read them)
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
My breast surgeon acknowledged she was involved in my LE--it was only three weeks post op--but told me she had no responsibility to help me treat it...
That is SO not my department.
Kira
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Hi Ladies...........I might have said this before, but must repeat it for the ladies who are having problems with theirso called (Dr's) with regard to LE.
It was probably my 3rd visit to my BS when I questioned him about the swelling of my right arm (side of lumpectomy)......He didn't push me off, but he did think at that time that it could still have been a result of "surgical swelling"..................He did say he would keep a check on it, and I should too.
Around week 4 I started my Rads...........after about 2 weeks into Rads, I questioned my RO about the arm also................Immediately she took out a tape measure and began to take the measurements in both arms................she said .....................yes your swollen slightly in your surgical side arm , and it could be the surgery, but lets get you to a LE specialist right away .
She also insisted that the LE person be Board Certified........there was one right in the same Dept. as Rads and Chemo, and I had an appt. with her in 2 days .................she confirmed that is was a very mild case of LE, and massaged my arm and taught me how to wrap it..........................I have been going to her 2 times a week, and I have seen her approximately 5 times, and already the LE in my arm is down to a % where they can put me in a compression sleeve................ I will be measured in about 1 week, just as soon as she is sure my arm is going to stay at the % it is now...............She showed me all the possible types of sleeves, from the cheapest to the most expensive.......................I have to go to another specialist for the accurate measurement, and then that person will get the sleeve, and teach me how to work with it, in reagard to putting it on without a struggle, since they are tight.
I had all my work done, at a Regional Cancer Center in Pa. which is directly connected to Fox Chase Cancer Center (one of the leading cancer centers in the country)......................
Not sure why the big cancer centers are not recognizing LE, but they better get a wake up call, cause surving cancer is only as good as the quality of life you have.....................and I don't think a "lifetime" of LE is quality of life...................I'm mild..............God help the women who I have seen that are serious cases..............good luck ladies.
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Ladies, there is such a wealth of expertise here, I want to ask a question. Can you wear an underwire bra if diagnosed with LE? Three years ago when I was diagnosed, going through chemo, surgeries, etc.someone told me not to wear underwires which I haven't since. Now that I'm done with reconstruction, I'd like to wear an underwire bra occasionally, but I honestly can't remember if this was a long term no-no. Can you help? Thanks, deekaay.
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deekay - I can only offer my experience. I have LE in my fingers not anywhere else and I hurt if I don't wear an underwire. I think it depends on where your LE is located. I think I've had some nerve issues and anything less than a tight underwire makes me hurt. As with everything LE it depends on the individual and it depends on where your LE is located.0
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Also ... note your swelling ... if the swelling gets worse with an underwire and there are no other variables (heat, salt, whatever makes you swell) then you shouldn't wear one. I notice no more swelling on days I wear an underwire than on the days that I don't.
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Will comment as I remember what I've read here. Had MY check up visit my Rads Dr this week. She asked me how I was doing and so I told her how LE has so negatively impacted my life, how whenever I try to do something I used to enjoy, I pay a heavy price, and on and on. At first she just looked at me. Then she started asking questions. Then she started writing things on my chart ("What a nutcase??"). Then more questions. Then she told me to start at the beginning and that I was her last patient for the day so just have at it. It's not the first time I've spoken my mind about LE and how I felt the medical community let me and a lot of other women down. All my doctors have heard this many times before. I figure it's just like school learning. Keep repeating till it sinks in. I go on about lymphedema with every doctor every time every visit. Finally, I got through to one. And she asked me what I would recommend they do. WOW. Baseline measurements before surgery is first on my list. We all know what we want. I went through the list. When I left she hugged me. I drove home feeling much lighter. Is there any woman in the U.S.A. who isn't aware of breast cancer? Very few know about LE until it's too late.
I agree with our gurus...learning to bandage can't be done by watching a video, but once you've learned, the videos can be a great reminder tool. I was taught not to pull the bandages on, but to let them roll on naturally. This takes a special touch. I, too, was told to add bandages for additional compression. I HATE BANDAGES even though they work. Look to Step Up Speak Out site to see pics and I believe they offer several places to get them. I got my first two sets from my LE therapist. When it was time to reorder, I went to Lymphedema Products, where I've continued to buy most of my supplies. As most of us do eventually, I experiment with different products sure that one will feel better or work better than another. Best get one of those plastic storage boxes! I'm sure we all have those to keep our supplies in. I also have a convenient travel case with everything all packed in there for when we go away. Fits nicely in my suitcase and I always know I haven't forgotten something I will need.
Binney, your comment to Cookie's inquiry why she doesn't see more people in garments is right on. Maybe they just stay home. That's where I am during the worst of the heat and humidity. Just cannot go out in it without swellling up like a sausage.
Our air conditioning is on the blink. Just a couple days after we had it serviced, too. Luckily, we have two zones. Anyway, when I called them to come back they asked if it was a life or death emergency. That was a hard one to answer, but I said no. They'll be here Monday afternoon. Tomorrow will be hotter. Have all the ceiling fans going, pulled out the floor fans too. Honestly, it's not too bad yet.
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