GRRRRRRRRR I HATE LE..........
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Towny, we have a great paper by Andrea Cheville MD of Mayo Clinic to back that up--the LymphaDiva group, the Levin family, asked her write and research it when we questioned photos on their circular of woman wearing sleeves without hand protection--they took the question very seriously, and we owe them a lot of appreciation for that:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
Thanks for reminding us--far too many women get a script from one of their medical providers for a sleeve, and NO gauntlet or glove.
Towny, I read you had pneumonia recently--hope you're feeling much better.
Kira
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Jo, everyone is different, and the Andrea Cheville paper basically said: if you're wearing a sleeve as a preventive measure, definitely wear hand protection.
If you already have LE, and it's only in the arm, you can try it without hand protection.
As someone whose LE is in her hand, sleeves do me NO favors--the rare times I wear one, it's with a glove.
Kira
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Since my LE is mostly in my upper upper arm, with the 15/21 sleeve I could go gloveless for a short amount of time....(I read the AC article on this).....It was never really more than 30-45 minutes...but with the 20-30 sleeve I don't do it at all.
Fortunately my LE has for the most part regressed, not gone, but regressed, (I hope I am not jinxing myself), even with these mini breaks...(I actually had a sleeveless meeting the morning of my last app..so I was VERY surprised my measurements were so good.)
I am not sure if it is because my very frozen shoulder is better, or I have the right sleeves, or my whopping 6 pound in 8 months weight loss...my MD suggested for special occasions I could go without a sleeve for 2-3 hours and see what happens.
This weekend was kind of a test run, but there was no flight, and it was not crazy hot, and I was inside a very very air-conditioned convention center.
I do keep the sleeve with me at all times, I know the clock may strike 12 on me at any moment.
Not saying others should do this...who knows... eventually I may not be able to either.
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as a lady that suffers with LE: and neuropathy in my dominant hand, i can testify that i can't wear a sleeve (have arm, also) w/o the glove, and a full glove; as the fingertips are where the fluid collects.. thanks for that link, Kira... Binney, i hadn;t heard about the paint roller. am gonna try it tonight. i wore a new/(old) bra today, and the dog ear part sweeled up in just an hour... I always wrap after mld.. so, my therapist gave me short stretch bandages, and over a few hrs. it usually recedes... good luck, swell sisters..... 3jays
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I now remember reading about using a paint roller. I will have to put that on my shopping list for tomorrow. I definitely can't reach that area. Stay in my PJ's today so hopefully it will feel better tomorrow. I will admit I didn't drink like I should because I just didn't feel great all week with the heat. I also ate shhhhh nathan's hot dogs. It was new for our area and they were so good. lol It's a good thing we came home.
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Paint roller? What's next? I am out to buy one today! Binney you are a fount of information. I am sure my therapist will like this one!
Kitty--Hope you are feeling better today. I love Nathan's hot dogs! I only eat one when I am traveling.
Becky
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re Paint rollers. Round here you can get the standard one about 10" wide on a handle about 10" long, you can extend that handle with a broom handle to go up high walls etc
But, you can also get little rollers about 4" wide on a very long handle about a yard long, to go down behind the radiator, and that's so much easier to reach behind your back if you're having to work on your own.
You can also use a doorframe as a "scratching-post" to move fluid across your back, but mind out for the metal thingy at waist level that the closing mechanism fits into, often a sharp bit sticking out
Jo I like your idea with the soft ball, and I bet the coordination and sideways movements is really good for your figure too!
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The paint roller idea is from "Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing" by Burt and White. (Excellent book to have for reference, BTW - good illustrations of all the self-care procedures, encouraging tidbits from patients, nice to review from time to time. Some libraries have it -- just look for Second Edition, as it's more up-to-date.)Get one!
Binney0 -
Maizy, welcome!
I'm so sorry for the reason you're here, but glad you found us.Good for you for starting treatment this week! Here's wishing you a wonderful therapist and great results.
Maizy, LE is a chronic condition.
We learn to manage it, but there currently is no cure. (Lots of research going on, though, fortunately!) Treatment involves reducing swelling, getting you the well-fitting compression garments you need to keep it that way, and teaching you the all-important self-care skills of self-lymph massage, wrapping with shortstretch bandages, skin care and exercise. Lots of information about treatment, therapists, garments, self-management here:
http://www.StepUp-SpeakOut.orgKeep us posted on your experience, and tell us how we can help!
Gentle hugs,
Binney0 -
Kira... yes I had a small case of pnemonia.. I also have plurel enfusion.. on oxygen.. sometimes a lot sometimes not so much...
I am on a parp trial as well. I will be seeing the doc tues the 9th. I am going to ask if they might think I am allergic to something. It appears that I cannot breat after wbc shots etc on second round of chemo... we will see. This will be my third session.. two weeks on one week off.
I am not exercising or anything anymore. No energy.. go to work come home and hang out.. clean the house a little than that is it!!! I am grateful to be at work and am able to keep doing this.
I look forward to exercising and getting to the pool soon.
thanks for asking...
on the lymphadema. I use the juxta sleeve all day every day and it has helped an incredible amount. My arm does not look any larger than my other arm !! It has kept the swelling down 100% and I do not go to the pt anymore!!!
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Thanks Binney4 and Kira I will try the recipe. Had a bad episode this weekend with gluten. Went to my only resturant that I eat at and something got into my food. Soooooo sick. Body still recovering. On the brighter side, the clinic called me back and now have got a call into onc. for referral. Hopefully I will get a call and get the ball rolling for physio. I start back to work tomorrow for 2 days a week @ 4hrs. I went back to work at the end of Jan. and was off again first week of March due to the steroid Hercepton. Wish me luck!
Hugs to all you swell ladies.
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I bought the paint roller and will be giving it a try tonight. Benney thanks for the info about that book. I am going to go look for it now. It is down some today. Fingers crossed it stays down because I am traveling again tomorrow. Only 8 more days to stuff summer vacation things into. I am ready for her to go back. lol I love my quite times.
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Hi all
Love the sound of the paint roller. Must get one and try
I really do hate LE but love the therapists. Had MLD on Friday and because a lot of it is truncial and in my shoulder area it was decided not to bandage just to tape. Top of arm was down over 3cm by Monday.
I can't wear just my sleeve, must have gauntlet on at least or else my had swells. Have been advised to get heavier sleeve so will see how that goes especially when we are travelling next month.
Comment I had yesterday was oh can't they do something to drain your arm???!!!
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Hello all, haven't stopped in for awhile--I needed a break from the boards for a bit. Don't know how I managed to do it, but pec muscle on my LE side started hurting a lot yesterday and by the end of the day the LE is the worst it has been in a year. Slept with the arm about elevated to the ceiling last night so the swelling is better today, but, I'm on the computer a lot today so I'm a little worried. How long do you guys give an exacerbation before you call to get seen by the LE therapist again?
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KMMD, you know I'm on the maintenance plan--I get MLD twice a month--but if it doesn't respond promptly in a day or so, it's worth a call, IMO.
Does wrapping help?
Kira--tried to take a break from the boards, but here I am....
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Oh, what would I do without you ladies. I've been sitting on the sidelines for the past year reading and learning. You all have been my number one resource, nothing like tried and true informtion and advice. Trust me, you all have helped more people than you will ever know. Now it's time for me to jump into the pool!
So to get started . . . I knew I was at risk (bi-lateral lymph dissection, radiation to both breasts with an extra shot directly to the nodes on the right side) but when I mentioned my concern about lymphedema to my Onc I got the old eye roll. I constantly complained about swelling in my hands, he'd look and grunt, "I don't see any swelling". I finally brought my rings in that I wore before treatment to show him they didn't fit to prove my fingers were swollen. Only then did he admit, "You might have some lymph fluid build up in your hands", but still dodged the term lymphedema! He did send me to a therapist, but I felt they were all appeasing me at the time because the swelling really wasn't noticable. I did get sleeves and a couple lessons on MLD along with some handouts.
I took great care at first but then acquired the same lackadaisical attitude. Lo and behold I took a hike across the grand canyon in June without taking any precautions and "ta da!" full blown flare up in my right arm. I know so because when I went to the therapist she said, "Now you've done it! You have full blown lymphedema." Like this is my fault?! In my mind, this was inevitable, weirdly I'm sort of relieved someone will finally take me seriously. To top it off though, I find out that none of the thereapist have any NLN credentials, but they assure me they're certified and the only difference between them and LANA therapists is a measly test. ha! My thought is, "Then why don't you take the test?!" Anyway, gotta go where my insurance takes me, but you can see what I'm up against. That's my rant . . . GRRRRRRR!
By the time I saw the therapist I had been swollen for 5 weeks. She was going to bandage me, but then changed course and decided I should try MLD and sleeves for another week. (I had quit wearing my sleeves because they seemed to make things worse especially my hand. I was afraid I was doing more harm than good). The therapist noted that my gloves were too tight, but said that was ok and I needed to wear my gloves/sleeves "every waking hour" for the next week and then call if the swelling didn't go down.
My biggest question: Is some swelling considered OK or should I be shooting for normal? I can live with the level of swelling I have, it's uncomfortable at times, but not painful. I kind of miss my knuckles though ;-) I know I need to go back and see the therapist, but I want to make sure I have as much information as possible beforehand.
Oh, yea . . . one more rant. I mentioned to the therapist that my breasts have been swollen for the last year and docs keep telling me its the radiation (my last treatment was November). Well, guess what? Yep, lymphedema. Now that I've taken measures I've been able to relieve some pressure there, too. But WTF (excuse me but . . .) What is wrong with these docs! I really feel I'm on my own out here. So thankful I have the internet and this great community to tap in to. Love and hugs.
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Quiche,
What a horrible, all too familiar story.
LANA is just a test, but make sure they're fully trained--135 hours--not just a weekend course,
I have hand swelling, and sleeves make it worse, even with my gloves--and I have great, custom gloves. LE therapists and Andrea Chevillle of Mayo Clinic talk about how hard hand swelling is to deal with--hands aren't simple cylinders, like arms, and the drainage is tough and they swell easily.
Totally agree with you that the "full blown LE" is NOT your fault. And, yes, you have every right to expect and demand that your arm and hand return to normal size.
For me, wrapping is the key to control, and they should at least teach you and get you bandages so you can utilize it as needed. Sleeves maintain/ wrapping reduces.
Please check out the stepupspeakout site, I'll link the breast LE page.
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
The women on this board are amazing, and we're all here for you.
Kira
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Thanks Kira! I'll raise my expectations and get back into therapy. You mentioned a few posts back about your hand lymphemdema and it was the first time I realized it was a different animal. Until then, I figured it was all one in the same. It sure helps to have that awareness. Thank you and I will check out that link. I have tapped into stepup-speakout before . . . another great resource!
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[[[[[quiche]]]]] - As Kira said what a horrible but all to familiar story!
Makes me so angry and so sad to read your story because so many of us, if not all of us, have dealt with the eye rolls, the lackadaisical attitude, the ignorance and incompetenace. Insist upon learning how to wrap. I have the swellng primarily in my fingers & hands and as mentioned above, do not wear a sleeve without the gloves. Isotoner therapeutic open-finger gloves would be great for you right now because they're so soft and will give you at least a little compression without hurting or causing chaffing between your fingers. Google 'istoner therapeutic gloves' and it will take you where you need to go. pattersonmedical.com is one of many sites that offers them. 0 -
Quiche, the eye roll thing there should be a law against. You know like when your Mother told you as a kid your eyes would freeze that way, that should really happen when a health care provider rolls their eyes. As I just told someone else worried she wasn't being listened to, it is our job to bring changes to their attention, but it is their job to listen, work it up and never blow us off.
Kira, I've never actually been wrapped. That was my first thought, wondering if it was time to start. Except for the time about a year ago when I took too many plane flights in a short period of time to places where the food had a lot of salt, the sleeve and MLD has always kept things in control. My sense is it is taking less to aggravate it now and this really got worse on me fast. I can baby it a little today and tomorrow but have a long long work day Thursday I'm kind of dreading how this could feel by the end of the week
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Dawne-Hope: Thanks for the tip. Those gloves sound soothing. BTW-Love your name. Not sure if its you're real name or internet name, but either way it's uplifting :-)
kmmd: I appreciate your support. So funny to think of their eyes freezing in the middle of an eye roll and how nostalgic to remember being reprimanded for it. ha! Thanks for the chuckle!
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KMMD--Can't say I like wrapping, and sometimes I do wonder why I do it nightly, but I swell at night, and the Solaris/Jovipak weren't good for my hand. I do wake up with a "normal" hand.
For me, it's a powerful tool to reduce swelling. If I could get away with a night garment, that would be so much easier.
I recently had a breast MRI (all good), and kept a close eye on my good arm, the one they used for the IV, and noticed that it was visibly large--to me--and that's how I've measured in the past, although my LE arm is my dominant one-- than the one I wrap every night. And I don't think it's atrophy.
Love your idea of health care providers getting their eyes stuck with the roll.....
There is a study--not yet published--about using NSAID's for LE--don't know if adding one would help with this flare.
I'd say, time to get the wrap to add to the tool box. Hope it settles down before the long work day.
Kira
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Jo, I am waiting for it to be published, but the investigator is a great researcher and has emailed that the results are very promising.
Lymphedema is closely linked to inflammation.
I don't tend to take NSAID's and maybe I should...
But, for a flare, if they're not contraindicated for you, worth a shot, IMO
Kira
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Quiche you asked if some swelling is ok or if you should shoot for normal - my understanding is that to allow any swelling is bad because if there is extra fluid hanging around in the tissues which is rich in protein then you are much more at risk for cellulitis infection of any minor skin damage which can be very serious and land you in hospital and you could need IV antibiotics, so yes, try and keep the swelling as low as possible. also the fluid can cause fibrosis which is a permanent thickening damage to the tissues caused by irritant properties of the fluid, and if that happens then it gets harder and harder to massage the fluid away and the whole thing gets progressively worse. I'm aiming to stay at low level as long as I can, take all the precautions I can especially like wearing my sleeve for flying and sport, and asking for help with my luggage. "But we don't see any swelling?" I answer No, and I plan that you won't in future either: You also don't see my beanyboob, I hope!
What's wrong with the doctors... I think it's because they like to fix things and make us better, (I'm a fixer too and surprised when mum keeps bringing me more problems to fix!) so when they find something they can't fix.... maybe they don't see it? also it may also be the case that we are surviving breast cancer much longer than our great-aunts used to,, and not mostly dying within two or three years of diagnosis, so more of us now live long enough to get lymphoedema. Oh the joys of progress, we moved from rapid mortality issues to prolonged survivorship problems
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Hello everyone,
Kira- I find it interesting that you only wrap your hand. Am I hearing you right? My swelling started in my hand and my forearm. I've never noticed any in my upper arm. After about 3-4 months of wrapping, my hand/arm is staying pretty consistent. However, I have a few trouble spots. Specifically between my knuckles and fingers. Are there any tricks you use to get those spots down. I try to ask my therapist but I feel as though she doesn't always hear me. I pretty much always wrap my whole arm. And I find that if I'm not continually wrapped, I swell a little bit again..or it could just be my trouble spots dispersing the swelling a little bit. I just finished radiation last week so my LE therapist told me to be patient and give my body a couple of weeks to heal. After 4 months..I am getting a little impatient.
Now..as of yesterday, my radiated breast is burning. I don't know if it's healing or swelling? I have been running outside the past 2 days but I don't really feel like I overdid it. So I took some ibuprofen this morning. Hopefully it will help.0 -
Thanks hymil: That's great information. Those are the types of consequences I was wondering about. My gut was telling me to seek more treatment, but my heart was hoping I could dodge the bandaging. I appreciate the boost. Your theories are probably right on too. This is a small price to pay compared to the alternative.
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Melanie_Ann: I wrap all the way up--the therapist who first told me to wrap devised a wrap, with gray foam cut outs for the hand/palm and forearm and I only wrapped to the elbow, but developed a pocket just above the elbow--so now I wrap all the way up.
Last October I fell and broke my LE hand and couldn't wrap for 6 weeks while in the cast, and my upper arm measurements stayed stable, but due to the past history, I go to the axilla.
Here's what helps for me: gray foam cut outs--there is something called the Law of LaPlace which translates into if you wrap a flat object, most the pressure is on the sides. If you make it thicker--with foam--the pressure will be on the middle more.
I have a cut out that covers the dorsum of my hand and extends to my forearm, and one for the palm. Because I had problems in my forearm a while back, there are two pieces to cover the forearm as well.
But, the key to the hand swelling, for me, is "carrots" they are narrow foam cutouts that fit in the web spaces and go underneath the hand foam piece.
All foam should be beveled to avoid pressure spots.
I've used the first therapists' foam as templates. A huge box of gray foam is dirt cheap, and when it becomes too compressed I cut out new ones.
I wish I had a picture. Maybe I can take one and post it.
Carrots are the key for web space swelling for me--didn't start using them until the cast came off, and they work great.
I work in rad onc, and I find that the patients are really likely to swell at the end of rads for for the next few months but then it gets better.
Hope that makes sense.
Kira
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Quiche, there's a new position paper out that talks about tne need to treat LE aggressively and early.
It has some stuff in it about weight lifting and bioimpedance that is controversial, but overall, a good reference:
http://www.avonfoundation.org/assets/le-meeting/le-white-paper.pdf
Yeah, we all don't want to deal with this--it's only natural--but we can keep it in check or get remission with treatment.
Kira
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A picture would be great...lol .
I've seen the grey foam but my therapist has never used it on me. I've actually thought about trying it myself. I finallly got her to try some white foam the other day on a swell spot. She said she rarely uses it...I'm not sure why. But I have a ton of swelling in my palm. Yet again, she said she rarely sees that and she never really addresses mine. I'm afraid she wraps my arm too tight (I learned how to wrap from my 2nd therapist, and when I wrap it looks awesome!). But I still struggle with the palm and between my knuckles. Overall though I've had an almost 10% reduction in my arm and I am happy with it. I just want to continue to try to get it completely down.
Are the carrot things white? I have a piece of white faomy stuff with ridges. I cut one piece off one time and put it between my fingers. I may need to try that again. I need to be educated on what everything is called.
Thank you so much for your advice!
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Melanie_Ann--you can cut carrots out of any foam--some are more aggressive--on LindaLou's pictures of LE, she shows carrots when she wrapped her hand, and she used velcro on a cotton glove.
They make palm swell spots, by solaris.
I get some swelling in my palm under my index finger and Binney has primarily palm swelling--yes the dorsum puffs up easier, but palm swelling isn't rare, it's also shown in LindaLou's pictures.
Let me work on some photos.
Kira
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