ALL THINGS Gloves and sleeves
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Hoping to make you laugh! LOL
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gma my night vest comes just under the ribcage and my shoulder is covered by the sleeve. Its a onepiece. I wear it if my nasty back of armpit acts up or if I have overworked my arm. I couldn't bear to wear in the hot summer
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Yikes, GmaFoley! Sorry you need so much gear
So, is it vests at night and sleeve/glove for daytime? (still confused, chemo brain here)
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tessu - everyone is different. I wear a compression vest 24/7 (and a stronger one when I fly) but I only wear sleeves for repetitive or heavy work or for flying. Sure hope you will be able to find a trained PT to evaluate what you need.
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Thanks. I met this area's LE expert last week, but as it was only a few days after my second round of chemo, and my brain was so foggy, I don't remember much. Luckily husband was along, although he only remembers bits and pieces. Oncologist said that this "brain fog", which is worse the week after a dose but clears partially but not completely weeks 2-3 of chemo cycle, comes from the Taxotere, and should finally ease over several months after my last dose. Hope so.
This LE therapist showed me Vodder Wrapping, which freaked me out, as I had never even heard of anything like that, had only the previous week learned about compression sleeves/gloves. She said she needed oncology's permission to start therapy during chemo (infection risk?) otherwise would start in the spring after chemo was done (I assume the Herceptin-only year doesn't count as "chemo?). Unfortunately I got a skin break on my hand the next day on the web between the thumb and first finger, which has been slowly healing, so I haven't tried the wrapping yet.
Woke at 3:30AM, and this time couldn't fall asleep again, so I've been reading and especially watching YouTube videos about LE wrapping (Thank you, GmaFoley for the above link!!!) When the LE therapost wrapped my hand and arm, it felt like I was in a cast, couldn't move anything. Since LE is in my dominant right side, and I have chronic pain/nerve injury issues in my left arm/hand, that was extremely limiting and a bit scary. However, the YouTube videos say/show that you are supposed to wrap so you CAN make a fist and USE you arm/hand --- motion is part of the therapy! --- so I am not so scared of wrapping now. It's 6:45 AM now, plan to finally watch the official Vodder Method DVD after breakfast, and yes I want to try to wrap my hand and arm.
Thank you ladies a thousand times for all your support!!!
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Tessu--I think you're on the right track with Vodder wrapping at night. I've found that the most helpful tool of all. I have a night garment--similar to the picture above but in pink. I sometimes where that when in a hurry, and I even wrap over it at times. I think it's very expensive so if your medical system will not pay for it, you might not want it. The good thing about the wrapping supplies is that they're relatively inexpensive. I found that I got used to sleeping in them pretty easily. However, I remember how difficult sleeping is during chemo, so I think you have to do whatever you can to maximize your sleep.
I don't quite understand the statement of the PT that treatment can't be started during chemo because of infection risk. I would think that you'd want to be doing wrapping because the larger the arm gets, I think the greater the risk for skin infections. Just my two cents.
Best to you. You seem like such a nice person, and I wish you well as you finish your treatment.0 -
GmaFoley and Mary625, are your compression vests Caresia products? Another forum member contacted me by pm and her Caresia night sleeve looks like it's made of similar material to your vest.
My brain was chemo-fried that first visit to the LE therapist, but after the weekend cleared enough for me to read and watch videos etc so I am beginning to understand LE and its treatment a bit better. Met with the LE therapist again Weds. and wrapped myself yesterday and today (takes ages but I am slowly learning). Still don't have anything for my painful chest wall LE, though
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Mine are JoviPak - They are expensive, but I have had mine for 3 years now and only wear it when I have issues. [A wonderful BC sister bought it for me when I went to have them measured out.]
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tessu, the caresia and jovi products are both made of chipped foam sewn into channels, a kind of quilting. The result is that the bumpy texture presses into the skin, nudging the lymph, and the channels--the quilting lines--direct the lymph in the desired direction. Caresia is made to have short-stretch bandages applied on top, and that's what provides compression as well as snugs up the fit. Caresia products come in pre-set sizes. I'm not sure if Jovi products come in off-the-shelf sizes. The makers of Caresia (Solaris, in Wisconsin) also make the Tribute line, which uses the same chip foam construction and is made to measure. I do not believe that there is a Caresia vest, just products for limbs and hands. The arm Caresia does not have a hand piece, so you would either have to wrap your hand or purchase their hand piece (which I think they still want you to wrap over).
A company called Biacare makes a similar line of night sleeves, and the sleeve includes a gauntlet to offer hand protection. The sleeve comes in off-the-shelf sizes. The Biacare night sleeve comes with a lycra over-sleeve that snugs up the chip sleeve and provides the compression, so no wrapping and no hand piece are needed.
So, there are several options for night garments that use the same chipped foam construction. The made-to-measure options are 'very expensive,' and the off-the-shelf options are just 'expensive.' I am guessing that you could purchase a Caresia or a Biacare off-the-shelf sleeve online, but shipping to Finland might be a fright. I also learned that Finnish customs officers inspect incoming packages and make the recipient pay tariffs on their contents (learned when I sent some gifts to a friend). So unless you have a friend willing to hand carry such an item to you, the roadblocks seem huge!0 -
Thank you everybody for so much support and information! I will definitely ask my LE therapist on Tuesday if any of these easier-to-don compression products would suit me
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WTF! I just flew this weekend from Chicago, Midway then home Boston, Logan. At Logan I got the pat down because of my sleeve. First time ever. Anyone else get this when they fly?
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Rarely, but yes. Screening is not fully standardized, based on my observation as I fly to and from many airports regularly.0
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carol57: Thank you for all your information, also for posting a link to your notes from the LE conference. There is so much to learn. Sounds like thise foam filled sleeves would save less time than I thought, considering you still have to wrap your fingers then over-wrap the sleeves. However, since they're filled with chips, they might eliminate the grooves that form in my arm from the spiral-wrapped wrapped foam sheets.
My biggest decisions now are: am I brave enough to trust my Vodder skills enough to wrap for sleep tonight (probably), and dare I at least night wrap and/or use my stretchy Jobst sleeve and gauntlet glove during the chemo infusion (still not sure it's safe --- don't want to slow drug clearing/increase neuropathy, but am VERY afraid if I use nothing, my hand will permanently BLOW UPand become unusable
Still have a few days to decide.I am trying to absorb as much as I can before my next chemo dose next Thursday fogs my brain again (I hate that).
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lago: I heard so many horror stories about agents pulling aside women with breast prosthesis,, that I get to the airport early,, go thru screening without my compression, and then go in the bathroom to put it on. I can only imagine what they would see on the X-ray, with the Swell Spot. **what the heck is she wearing?** So that's what I do to avoid any issues. And I agree with Carol, that screening is not standardized,,,, some places are lax,, some are really strict.
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I'm about ready to cry
Just spent about an hour trying to Vodder wrap, the blue foam kept unwrapping when I started to do the overlying short stretch bandages (no tape seems to hold foam). I am supposed to make a fist and push against something to activate arm muscles while applying the short-stretch layer, but can't coordinate. So I didn't. Not pulling tension, just wrapping. Doesn't help that Taxotere has taken most of my left fingertips feeling After a gazillion stop -replace foam - restart the outer layer tries, I finally got everything on, but without the "press your fist" part --- so I just hope it doesn't do more harm tham good overnight. I decided to wrap overnight, because the glove I got Monday is now a bit too tight even after the 9-hr wrap today (hurts), and my hand swelled some after the couple hours in sleeve/glove. Afraid without wrapping tonight, Í'll wake up like last saturday, with my hand too swollen to use. So, wish me luck
I usually wake several times a night; if the wrap hurts, I'll take it off. I am so frustrated and scared
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Tessu, there are a few other things that may help as well. Like staying VERY WELL hydrated, and especially, elevating your hand/arm on pillows tonight while you sleep.
As for learning to wrap, trust me, we've all shed tears over this--very steep learning curve. (Some of us--like me, for instance--have even taken to flinging the bandages around the room. What I learned from that was that dog hair on the carpet will get stuck to the bandages and have to be picked out one hair at a time--not a bit nice. So if you're going to fling bandages, vacuum first!) Try laying your arm out straight and completely flat on a table (or your bed, if you can do this kneeling on the floor)--then, as you wrap, the flat surface helps hold everything in place.
Hugs, Tessu--and wishing you pleasant dreams!
Binney0 -
Thanks, Binney4. I was afraid to go to sleep, so have been reading on the Step Up Speak Out pages. Yes, my new gauntlet is way too small, doesn't cover knuckles, maybe that's why my fingers have swelled. "Long" off the shelf sleeve is too short (by SUSO photos). So no, I'm not just a whiner.
While reading, my hand felt like I had wrapped too tight (why I was afraid to sleep wrapped). But I just re-did the foam and ss-bandages a bit looser. Going to try to sleep now (after 1 AM, ouch) wrapped. I'm going to try to sew a velcro//elastice band to go around my arm to keep the foams from unwrapping while I put on the ss-bandages. Not giving up.
Good night
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Aww, tessu, I can feel your frustration waaaaaay over here! If you do go the Caresia route, it's true that you'll need to wrap over it, but nothing compared to the many layers you're applying now. If you can get your hands on a Biacare or a Tribute, there's no wrapping at all, and I believe that's true for the Jovi products, too. Getting these garments would be complicated from Finland, so if you are mulling your options during (hopefully NOT) more sleepless nights, be sure to research the products to understand which ones are intended to be wrapping substitutes and which ones are intended to maintain your progress with nighttime use, presumably after you have reduced your swelling via traditional wrapping. The Interrnet is such an amazing resource, but it's also a curse in that I think we all go there during sleepless worry nights! In this case, you can find out what's available. By the way, Solaris (the Tribute and Caresia products) was recently acquired by a German company, so I wonder if their products will be more easily accessible in Europe, soon.
I hope you're sleeping now....0 -
Day garments are not to be worn at night. Day garmemts are designed to work actively and night garments passively. In other words - day garments work when you are up and active/moving around. Night garments are designed to work when you are sleeping/not moving around.
If you were taught to wrap before you were measured for a day sleeve (should have to get swelling down to get the correct fit) you can wrap at night.
You didn't mention doing MLD (Manual Lymphatic Drainage) which you should have been taught immediately.
My LE started when I was about 1/2 way through adjuvant Chemo and I was immediately started with wrapping to get it down so could get the correct day garments. Not all are able to use OTS (Off The Shelf) garments as we are all built differently and the OTS are generic sized. I have to have custom - especially for my hand as it is somewhat 'webbed' so standard gloves make PAINFUL nasty sores between my fingers.
Infection is always a possibility with LE. Some have more issues with it than others - in almost 6 yrs of dealing with LE (many cuts/scrapes/punctures) I have not had any infections but many others have bad ones from much less.
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Kicks Wrapping was not mentined at all by the hospital breast cancer surgery FT. I had been following my operated side upper arm circumference myself ( but only at one spot, where I have a mole for same placement every time) and had myself noticed it increased 1cm after a couple weeks maybe more of pain. She just measured and gave an OTC sleeve (Jobst) and poorly-fitting glove (Lymed) and was told LE treatment was to wear them during the day and continue the post-op exercises that I feel started my LE when I had bad cording.
The private sector LE therapist was recommended by my husband's friend who is a rehab doc (but doesn't treat arm LE himself). She's Vodder schooled, and the first to start teaching wrapping. She confirmed the post-op force-it-up exercises were harmful, gave me others which I just started yesterday (Steve Norton).
I've had such bad "brain fog" the first 1 - 1 1/2 weeks after chemo doses, LE care has been hard for me to learn.
So, I slept 5 hrs wrapped, it still feels pretty ok, it's still very early morning here, so I'm going to close my eyes again for awhile
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I'm still unclear how to handle LE during my next chemo dose next Thursday.
I get high dose Dexamethasone the night before then morning and evening of chemo day. My weight jumps almost 3 kg (water retention) for a couple days. My LE had just been diagnosed a few days before my last dose, when my hand was not yet involved (nno pain or swelling), and didnn't worsen IMO.
However my LE has steadily worsened, and last Saturday after not wrapping or using sleeve/glove for three days (skin break btwn thumb/fingerr from bad-fitting glove), I woke up unable to use my right hand for 5 hours, the swelling was so tight I couldn't make even a hallf-fist or grasp anything. I am afraid of that happening again then NOT EVER resolving (permanent tissue damage) if I don't use anything during the steroids (even the LE therapist suggested that, just do elevation, wrap again once steroid swelling goes down). I can't wrap during the chemo infusion and still use cold glove to protect against further neuropathy from the Taxotere. The sleeve/new gauntlet glove are now very tight and make more hand swelling not less after wrapping. The very informative StandUpSpeakOut site does not clearly address this
I'm scared.
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Hi Tessu, I don't know a thing about wrapping and sleeves. I just wanted to say I'm sorry you're suffering. And I think you should use your own intuition on how to proceed. Sometimes putting your question into a search engine turns up your answer
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Odd because I've flown through Logan several times in the past 4 years
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Tessu: if the glove & sleeve are very tight and make more swelling,, seems to be that you shouldn't wear it. Sounds like they are making it worse. Can you wrap,,, do MLD?? Keep elevating and drinks lots of water too. I wish I had better advice for you.
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Thanks everybody for all your support
After being wrapped almost 19 hours (was going to go 23 hrs, but the tape gave way and the SS-bandages came loose), the sleeve doesn't feel too tight anymore. I'm wearing the bad glove (which I've opened seams to prevent rubbing on interfinger webbing) as some kind of support -- and surprise, it's not too tight anymore (my probably too tight gauntlet is still drying). Maybe the wrapping is working?
Had tons of stuff to do (dinner, walk dog, etc.) but plan to do the LE exercises before wrapping again for bedtime.
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Sounds like the wrapping is helping!! YAY!!
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Tessu, don't wear a gauntlet at all--it will force the swelling into your fingers.
Sent you a private message!
Binney0 -
Tessu--the wrapping really does work! Even though I have a Tribute night garment, I do a lot of wrapping interchangeably instead of that or over it. I'm wondering if you are sleeping on that arm. I keep wondering why your hand is so much affected--maybe even more than your arm, if I'm reading between the lines.
I'm wondering if the thing to do is just get through the chemo and then wrap it as many hours per day as you can stand. Maybe also wrap it the night before when you have to start the steroids. I remember those nights myself. Yuck. It sounds like they don't want it wrapped or in a sleeve during chemo, but I think you can work around that with wrapping and have the nice results that you are beginning to notice. I think it might be a good idea as well to keep your arm and hand moving as much as possible during chemo, possibly doing some gentle LE exercises, and massage the hand from time to time. Also walk during your chemo if allowed. Walk as much as possible. It's good to start thinking about the larger lymphatic system and stimulating it, which you can do by walking and deep breathing.
Best wishes.0 -
Tessu, hoping you get over your trials and tribulations soon.
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