ALL THINGS Gloves and sleeves
Comments
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(((Carol))) May you be comforted by memories.
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GMA, beautiful
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Thank you, everyone. All these kind words of support are much appreciated.0
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Really had a good look at gma picture againand it so beautiful.
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Carol, I am so sorry. I hope in some way you are comforted by all of us who care about you.
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Thank you to those of you who gave me advice on the gauntlet/glove and MLD. I made an appointment to see the PT on Monday. While the swelling in my arm didn't go down for several days (which made me upset), it is down now with diligent use of the sleeve and glove.
I noticed that when I wear my sleeve and glove all day --12+ hours-- that my arm feels like the sleeve has to come off! I feel like the sleeve is "strangling" my arm. Is it okay to take it off even if I have some computer work or busy work to do still, or will that just make the arm swell up at night?
I also noticed on several of the LE threads that several of you talk about "fist pumps" and "arm pumps" like when on a plane flight. Is this to get the muscle pumps working to move lymph out of the arm? Do you do this with your sleeve on or off? Should you do them when you exercise? How many times a day?
Oh, this is such a steep learning curve!
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I do fist pumps and arm pumps with my sleeve on and with it off too. I think that it helps the sleeve work to do some with it on. It's muscles that move the lymph, the sleeve is graduated compression which also helps the lymph move, and if you do both, I believe (and I think that I read it somewhere), that helps even more. I'm not as compliant as I should be, but I understand the feeling of needing to get the sleeve off, 12 hours a day is plenty, and when I get that feeling I take it off, I get claustrophobic really easily, and the compression garments don't help. If you do stuff with your sleeve off that usually causes swelling I would elevate it after and do some lymph massage. I do the fist pumps and arm pumps through out the day, kind of whenever I think of it.
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Sloan: good for you that wearing the sleeve and glove got it down! We do have to be vigilant with this LE crap. And I know that feeling of having to rip it off NOW! For me it's the breast binder that I have to wear for my truncal LE,,, I'm good if I last 12 hours,, before I can't stand it anymore. But some nights, I don't make it.
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Thank you! Do u squeeze your hand open/closed and move your arm up and down like you're rooting for your favorite team? Ten at a time or twenty at a time? My fingers do feel better when I do that!
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Sloan: I raise arm over head and open/close fist 10-20 times. Then I pump arm up and down like rooting for team. Seems to help with long hours on the computer (my job)
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glennie19--Thank you! I'll start doing that!
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Going to the PT today. Any last minute things I should have her explain "just in case"?
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Linda are you still on the Aromisin? It gave me degenerative arthritis in my fingers.
Just wanted to give a high 5 for lyphnaduvas. The sleeves are so soft and comfortable. I forgot I had it on!
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Chloesmom - If I'm the Linda your asking. I hit my 5 years on aromasin/exemestane and, because I have disabling side effects, I asked my MO if I could take a break. He really didn't want me to, said I was in the small group that definitely should stay on the AI for at least 10 years. My daughter is getting married New Years Weekend, and I would like to have some energy and less pain for it. He agreed, but wasn't happy. I went off of it about 2 weeks ago, and my pain level has decreased by at least half, still have issues, and have been able to cut my oxycodone to about 1/2 of what I was taking 2 weeks ago. So I think that really was causing a lot of the pain. I too have degenerative osteo arthritis in my knees, hands, wrists, feet, all of the spine (head to tail). And I know that the AI accelerated the degeneration, which only makes since estrogen protects our bones. I was afraid that the pain was due to the increased degeneration, but now I realize that though I can definitely feel the degenerative pain, it's nothing compared to the pain that the aromasin was causing me. My plan is to stay off of it until the day after the wedding, also try to get off of the pain pills then start over and go from there. My parents and husband are almost frantic that I'm taking even a short 7 week break. But I need to do this in order to move forward, right now I'm trying to figure out how I"ll go back on it. If I feel this m uch better after 2 weeks, I wonder how I'll feel after 7.
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Bump for mariebernice
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Discovered this thread kind of late, but here’s my $.02, adjusted for inflation.
Even before my lumpectomy my BS’ NP wrote me an Rx for a sleeve & gauntlet--insisting I fill it close to the day I was to depart on a trip to Italy & Spain that would require long flights between Amsterdam & the US. I had lumpectomy on the upper outer quadrant of my R breast, with SNB (2 sentinel and 2 “hitchhiker” nodes removed, all negative). I developed a breast seroma (initially invisible and asymptomatic) and an SNB one that by 3 wks post-op was the size of a tangerine or even a small orange (felt like I was wearing a shoulder holster). After I got the OK to remove the remaining Steri-Strips, the weight of my very large breast (D6, acc. to universal cup sizing) pulled the SNB incision (glued, not sutured) open and the seroma gushed like Old Faithful. BS’ partner squooshed out as much fluid as he could and agreed it needed to be sutured (said that if he’d done my lx he would have called in a PS to do a bilateral reduction down to no bigger than a DD). I filled the scrip (Juzo Soft, level 1, med/max top/regular length silicone band for sleeve and size S for gauntlet). but saved it for my trip. But w/in a week after rads ended, in the shower when I reached for my bath sponge I felt a painful pulling in the inside surface of my forearm, and I could actually palpate a knot. Before leaving for Europe, I made an appt. with the top LE doc in town. Two days before departing, I felt a pop and suddenly I had full painless ROM again.
An hour before the transatlantic flight, I donned the sleeve and gauntlet. Felt okay in flight but hadn’t realized I'd have enough time in Schipol before the final flight to Rome to be able to remove them, so I kept them on till we collected our bags and walked the half-mile to our hotel. I was fine. But the third day of our cruise we were on a shore excursion to Taormina, Sicily--a mile up in the mts. Hadn’t thought to wear compression nor even keep it in my purse. By the time we got back on the bus, my arm felt heavy and tight--and as we descended I actually felt it “deflate:” by the time we re-boarded our ship in Messina it was back to normal and remained fine the rest of our time in Europe. When we landed in Amsterdam from our short flight from Barcelona, I had just about an hour to don the sleeve & gauntlet. This time we had to fly first to Detroit before heading to Chicago. This flight, though shorter-distance, was an hour longer than Chi-Amsterdam. Halfway through, I noticed my fingers felt swollen--my ring, which sometimes even slips off, had to be twisted off as hard as my smaller engagement and wedding rings on my L. (I wondered if it was the salty airplane food and the peanuts).
Kept my LE doc appt. in early Jan., feeling kinda sheepish about even seeing him because my LE and cording symptoms hadn’t recurred. He took measurements and attributed the difference between the arms to my R hand being dominant, but noticed my L fingers could stretch further (probably because they've had to make chords on a guitar neck for decades). He also hit the ceiling when I showed him my compression set--“I never prescribe compression to someone who had only 4 nodes out, and I don’t think there’s any need to wear it in-flight without having been diagnosed with LE.” But because I described having had symptoms, and so that Medicare would pay for therapy, he diagnosed me with stage 0 LE and insisted I trash the gauntlet and get a glove instead. He prescribed the Mediven Harmony glove--frighteningly expensive, even more than a sleeve. No measurements--just that it be “comfortable."
Went to the medical supply shop he recommended. First red flag was that they had nothing in stock except display (not even fitting) samples and had to order everything, so I couldn’t tell if the glove would fit, much less be comfortable. Next was that they suggested that since I wanted a second sleeve to wear while the other was in the wash, I should get a Mediven rather than another Juzo, because their beiges don’t match. The fitter looked at my Juzo, measured me, and ordered a size M, reg. top, no silicone. I decided I wanted something badass-looking for my upcoming gig (since I was told to wear compression when playing guitar). I asked if they had anything in colors or patterns, and they said if I wanted it faster I should order it directly from LympheDivas. So I ordered the Music City tattoo-pattern sleeve in M regular and the glove in S. They arrived a week later (before the Mediven), but the sleeve was ridiculously long (extending into my armpit) and so was the glove--its open fingertips extended 1/2” past the tips of my fingernails. Called LympheDivas and the rep confirmed that I should have ordered a M short sleeve. But they didn’t have shorter-fingered gloves, advised me not to fold over the fingertips lest I get excessive compression, and warned me that trimming the tips would cause the fingers to unravel and run. They also told me they don’t do custom sizes in gloves. So I reluctantly returned the set for a shorter sleeve and matching gauntlet instead of the glove (still waiting for them to arrive--just shipped yesterday). My therapist kinesio-taped my hand & forearm so I could safely play that night in glove and gauntlet--and I did fine. Next morning the Mediven set arrived...the glove was stiff and thick and the thumb almost too long, and the sleeve very long and too tight at the top. Took them to my Thurs. therapy session, where the therapist said that although the glove fit the way a Mediven was supposed to, the fitter should have ordered the sleeve with an extra-wide top band. So I called the shop and they said they’d order the wider-top one and would tell me when to return the too-tight one. But though I could cook with the glove on, it was too stiff for playing guitar (at least for fingerpicking) and I couldn’t work a smartphone or touchpad because the fabric was too thick and fingers too long for my gestures to register.
Meanwhile, a week ago Friday I was checking my other guitars to see how they’ve held up in winter dryness (my humidifier croaked and the little soundhole humidifiers weren’t up to the task, especially in guitars I’d forgotten to transfer back to hard shell cases from cloth “gig bags”). One was in a heavy fiberglass flight case, propped against a wall. I hoisted it no more than 5 ft. onto my couch. It was fine...but my arm began to swell that evening. Next day I couldn’t raise my hand and dorsiflex my wrist. Did MLD and hoped it’d be ok. But Sunday night I grated hard cheese, opened a jar and scooped ice cream. I awoke Mon. morning unable to even touch my forearm skin to do MLD, much less my prescribed stretch & resistance exercises. Had to have help carrying the three cracked guitars down the stairs and from the car to the shop. My LE therapist was shocked Tues. by the swelling, and advised me to wear compression most of my waking hours (except for showering and doing MLD) till I got relief. Wed. the replacement Mediven sleeve came: it was very long and still felt too tight at the top. My therapist had me try to put it on using a “slippie,” and it still kept rolling down and binding. It was then she noticed its top was still smaller than my Juzo's. That was it. I went to the original breast cancer boutique that sold me the Juzo set and bought another sleeve and two gloves. And then I drove a few blocks to the medical supply place and returned the Mediven sleeves. So I’ll have two well-fitting comfy sets for everyday and one decorative one for performing.
Since Thursday’s therapy session I’ve had a long stretch (knock wood) of “good LE days.” I have full painless ROM in my arm & hand, my R hand ring once again falls off more than it stays on. Haven’t needed to put compression on (but no guarantee I won’t). At tonight’s neighborhood restaurant’s staff-and-friends Super Bowl party, I was talking to the hostess (the co-owner’s sister and a former flight attendant). She’s a six-year survivor (ER+ IDC, 5mm, grade 1, 2 nodes out, a month of rads, and on a 10-yr course of Arimidex). We compared Medic-Alert LE bracelets. I was surprised she had LE--she’s petite and slender. She said she had breast LE too while she was still flying. I’m beginning to think that LE is much, much commoner among bc survivors than published risk stats would indicate!
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Chisandy - You said you couldn't touch your forearm. Is that because of the burning sensation of the skin? I agree that LE is waaay more common than the docs say. I'm 7 mo post surgery, and it was the first time my surgeon didn't deny that I might have LE (despite my pain, slight swelling, and weird feelings in my arm). There's a study out there where 100% of the surgeons denied that any of their patients had LE, something the researchers pointed out was statistically impossible. I'm not sure if surgeons are under pressure to be perfect or whether they just don't listen, but I know for sure that no one is marking down on a chart that I have LE and showing the rate of LE among patients.
All -I do MLD morning and night, and wear a sleeve when I exercise. I take my first plane flight next week and am worried. I wore my sleeve yesterday when I changed altitudes and drove to the theatre --Dirty Dancing, it was great-- and I always wait an hour before removing it. It also seems to be flat (smaller when measured) when I wear my sleeve for several hours. But, my arm always burns and aches for several days after changing altitudes. Any suggestions?
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Is anyone else putting their sleeves in the dryer? In another post, someone has been told by their LEPT that it's OK to do that. I would really like to use the dryer, but I'm worried that I might shorten the life of my sleeve, it's custom, expensive and not covered by insurance so I hate to risk it unless it's a normal practice. I do put my night sleeve (oven mitt thingy) in the dryer because it took 3 days to dry when I didn't. The solaris cost 900.00 and again custom not covered but the person at the Fig Leaf (store for BC and LE supplies) said using the dryer was normal practice and that sleeve is supposed to last years.
Let me know about using the dryer for your day sleeve.
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I don't put my sleeves in the dryer.
Also I was told that sleeves & gauntlets need to be replaced regularly. I remember hearing something like every 6 months to a year but i guess that varies w/the amount of use.
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Heat from dryers ruin fabric. What eventually happens is the fibers wear out and your sleeve will stretch out. I don't even toss my jeans in the dryer. I tell my customers ( I sell jeans) the same.
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I made the mistake of putting it in dryer and I lost about 1/4,inch in length which was a disaster. night sleeves do go in dryer but generally not day sleeves. Check your labels on care,
BTW My fitter just talked to JOBST, I think MEDI owns them and they are taking over JOVIPAK. I hope they aren't cornering the market!Fitter found out that black leggings don't shrink because the thread is woven black but black sleeves are still dyed and shrink more than beige sleeves because of the dying process. we think its so stupid that they won't use black thread on the sleeves. Yes I have two black sleeves and both shrunk a bit even with handwashing.0 -
My fitter recommended putting it in the dryer on delicate (low for about 20 minutes) so I do and don't have any issues with it. I have Juzo custom one piece sleeves w/glove
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I have since acquired a bunch of LympheDivas sleeve & gauntlet sets to match various outfits--but also so I can travel up to 10 days without having to wash and dry them on the road. (That really helped when I had to fly to a music conference in the Blue Ridge Mts.). I think the reason for the 6-month replacement recommendation is for sleeves worn all day, every day--and having only one or two in rotation. Also, there's the ever-present specter of weight gain.
I put mine in the dryer on low, or in a pinch, use a hairdryer on “warm." I am fortunate in that I don't need to wear them all day, every day. I wear them when playing guitar, flying, changing altitudes (and I learned the hard way that taking a high-speed elevator to the 95th floor of a landmark skyscraper is “changing altitudes”). So I always keep a plain sleeve & gauntlet in my purse just in case. (I bought my LympheDivas on sale).
Sloan, it wasn't a burning pain, just ultra-sensitivity, actually below the surface. And it turns out the pain was from cording (which I thought only slim gals got). At my followup, my measurements are identical to where they were before surgery--I'm just displacing about 2 tsp. more water, which the LE doc said was most likely from more muscle buildup in my dominant arm after exercises. So I'm still stage 0.
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My current insurance will cover 2 for each arm every 3 months. I am purchasing only 4 every 6 months. But I find that when traveling washing in sink with shampoo works just fine. Let it air dry over shower rod. At home I do the same but use laundry detergent. I've always had at least 2 to rotate. I don't know how they expect these things to dry when you only have 1 and wear it 100% of your waking hours!
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So I have some questions about the sleeve. It is not comfortable actually it borders on being painful some days. I don't understand when I am suppose to wear it, instructions from the therapist included some people wear it every day, some never do. So what does that mean for me, how often am I suppose to wear it? I've seen that some just wear it while exercising, is this ok? Or wear it all day and be uncomfortable.
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@ladsgma ...Your sleeve shouldn't be painful. You didn't mention if you have swelling, but, A properly fitted sleeve should actually relieve discomfort from swelling not cause it. My experience with sleeves: took 3 tries to get it right, and when it was right (a custom sleeve) I only felt slight discomfort. As soon as I was using the arm while driving that discomfort went away. I am not an expert but if it hurts it's not right and you shouldn't wear it until you meet with your fitter or your LEPT. It wasn't until I asked the right question that I found out that my sleeve was to short. My first one had no compression on my wrist where it should have been tighter and was squeezing my upper arm. I had to learn to advocate for myself and trust myself enough to say "this isn't right". When I put the 3rd sleeve on I knew it was right, it's really hard to put that into words that will help you figure this out, but, I just knew sorta like Goldilocks and those beds.
Many of the woman on the board had similar experiences, several sleeves to get it right, and it sucks
I have breast, truncal and upper arm LE. I only wear my sleeve when I'm going to drive over 20 miles, the grogery because I seem to forget and use the wrong arm to pick things up, gardening and any other heavy work. After driving more than 150 miles I wear a night sleeve. If you have swelling in your hand and arm you may need to wear it and the glove all day. Your LEPT should help you figure that out.
The beginning of dealing with LE is the hard part, it does, eventually, get easier.
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I will be getting a sleeve eventually. Just wanted to jump in here and say hi & read.
Susan, reading your last post that it may take several sleeves to get it right is good info. Thanks. I will have to read back.
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Go to a good fitter they make all the difference.
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hi all - just wanted to share for lymphedivas wearers - they're having a today only 25% off (!)sale on their website in honor of Rachel's birthday.
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And speaking of armsleeves Brightlight! Get your political party on
Dems http://goo.gl/pHLttU
Not that the republican party one costs less. Seems it's less popular
Repubs http://goo.gl/6pf3210
