GRRRRRRRRR I HATE LE..........
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Glennie have you tried JoviPak garments - a I uni with truncal LE my LET had be me get a compression bra - like the Belisse for daytime they hold prosthetics, and a Jovipak like the one on this link to wear with a kind of sports bra over it to hold it in place at night.
https://jovipak.com/pads/breast-and-chest-wall-pads?product_id=42
Also, have a JoviPak sleeve for nighttime and love it. They sell all kinds of custom items for LE, they're made by Seattle and are comfy and easy to care for. But you've been at this a while so probably have tried this brand.
I guess I was really lucky living out here in the middle of nowhere that I found an awesome certified lymph therapist. She had all kinds of tricks up her sleeve. She worked for a hospital so she couldn't sell the DME's, but she knew every place in the state to get them, what to ask for, reviewed several brands, etc.... It really concerned me that the lady how's upper arm ballooned, that the therapist didn't notice that before it was too late, or didn't tell her what to do if she got swelling above the bandaging. And that she didn't know what to do. YIKES! Almost sounds like she forgot to clear the other lymph areas first or something.... Dang what a mess.
The first time I was wrapped was horrible, she wrapped my trunk, over the should and down the whole arm, just make sure. Uncomfy! But worked.
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Oh, Keesmom, yikes! That business of giving up your passion actually made me cry. I recently sold my spinning wheel, because that's an activity I can no longer do--very repetitive motions, which make my arms swell and hurt. Also crochet, which I always used to carry with me. Could do it anywhere, even out walking with my family. Made endless items for my kids and grandkids and the preemie nursery at a local hospital. No more, though. These are such hard things!
Have you sought out Occupational Therapy resources for adapting to being "one-handed in a two-handed world"? There are some suggestions on the StepUp-SpeakOut page about brachial plexopathy as well that might be helpful. It's here:
http://www.stepup-speakout.org/Radiation_Induced_B...
I love your spirit, Keesmom--the willingness to joke with those who question you, your gratitude (!) that this is not your dominant hand--just the whole way you express yourself. Brava! Wish we lived closer--I'd love to know you for real.
Gentle hugs,
Binney0 -
Nancy/StellaStar and Marijen, I've followed your posts with real interest, and I can taste your frustration. I'm so sorry! I wanted to offer a couple of thoughts, though. First, outrageous as it may seem considering all the bumbling that health care professionals commit over LE, there has never been a successful LE lawsuit. The reason is exactly what Nancy notes: there's no current research or knowledge that can guide a court in deciding that anything that was done was "wrong." There are no universally acknowledged "best practices" to use as a measure of proficiency and responsibility. There is a group of professionals working on coming up with exactly that, but they've proven to be disappointingly slow about it (to say the least!)
Research regarding the lymph system has dragged way behind other body systems and disorders. Partly that's an accident of history--the lymph system, being mostly invisible to early researchers dissecting cadavers, was slow to be recognized, much less understood. Only in the last couple of decades has it begun to be tied in a critical way to our immune capabilities--and even to the spread of cancer, since it's only recently been known that tumor growth requires not only blood vessels but lymph vessels as well. Happily, in the last few years the lymphatics have become something of a hot topic in many disciplines, as more and more is learned about the incredible ways our lymph systems act to protect us.
For now, best thing we can do is work on informing ourselves and taking responsibility for overseeing our own treatment. If our doctors are ignorant, here's a resource to print out for them:
http://www.stepup-speakout.org/essential%20informa...
The use of cold laser to "treat" lymphedema is not actually a new approach. The research supporting it has some serious problems, making it still largely experimental in spite of the fact that it's been around long enough to have been studied more thoroughly (had anyone gung-ho to use it taken the effort to do that). One of the contraindications to its use is the presence of cancer cells in the area, which makes it questionable whether it's actually safe to use on those of us who have had cancer. Again, there are no long-term studies that have looked at the question of cancer recurrence with laser use. There are other unstudied potential side effects as well.
All of which points to one of the critical problems we have when dealing with LE treatment: not enough researchers interested in lymphatic research, and not enough funding for those few who are. It's a black hole. Unfortunately, it's pretty much up to us to drum up some acknowledgement for this rotten condition. You might want to consider ways you can participate in that: start a local LE support group; throw in your support for the Lymphedema Treatment Act (they have state committees that need your participation, and they're planning another patient lobbying day in D.C. next April); call your local newspaper or TV station and ask to be interviewed about LE; educate your own health care providers, your friends and family, and those pushy strangers who ask you what the heck you're wearing on your arm.
Go for it! Together we can make a difference!
Hugs,
Binney0 -
Linda: I have that Jovi Pak product! However, I have found that Swell Spot work better for me cuz they are thicker. I'm a uni-boober, and it's not easy to get compression where I need it taking the remaining breast into the equation. So many products just don't give me enough compression where I need it. So I use a Swell Spot (the old style Breast one) and the breast binders from EAB Medical and so far that is working for me. I have tried a few bras, and they are not as comfortable to wear all day as the breast binder. The bras do give more coverage,,, but I have a hard time with them. Hooks and zip are hard to manipulate with my carpal tunnel issues. Sometimes I think going flat would make my truncal LE easier to manage,,, but then I don't want unnecessary surgery either. I'm so glad you were able to find a good LET in your area. I do sometimes think about a road trip to find someone else,, just for a single visit for some advice.
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(((keesmom))) SUCKS when doctors don't listen to you. That guy needs a junk punch.
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Binney4, thank you so much for the lovely reply! I truly was touched by your kindness and wished we lived closer too! I have been through OT and that has helped. I also have a supportive hubby and three daughters that help me out! Thanks for the link, I look forward to reading the info! Have a very happy, and blessed Thanksgiving!
Barb
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I'm still upset with the nurse navigators that both said, "don't worry about LE it doesn't happen that much anymore." The Rads doc that said, "we only treated that area once" and the surgeon that said, " I only removed 1 node". So the consensus is that I shouldn't have LE, but, I DO. This condition is desperately in need of research!
@keesmom @binney4....my giving up story....... I used to make stained glass windows, not any more, the glass is to heavy, the saw scares me now, the little bits of glass that got under my skin and were a wee bit irritating are now a big deal, the soldering gun could give me a bad burn, and the edges, when I look at them I see the cut that could happen and cringe. The last window I designed before Cancer and LE is my avatar now. It wasn't finished I was going to add another mostly hidden circle to the top left corner for symmetry. But it seems right that it's not symmetrical because I'm not symmetrical anymore.
Of all the things I do to deal with LE venting is sometimes the most helpful.
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SusanSnowFlake,
It's a lovely avitar. So sorry you had to give up stained glass. I see why though. Have you thought to try appliqué quilting? The quality of materials would be quite different, but you might find some satisfaction in the design and production.
I used to weave all summer when off from teaching. Instead I've been working as an administrator. I could no longer put in the 8-10 hour days of repetitive activities that I used to. I 've pulled away from commiting myself to exhibitions because I couldn't do the production. On Aromasin I even have trouble with arthritis from knitting too much. Thankfully this does not cause LE to flair.
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@doxie, thanks.
I have thought about turning my design into a quilt. I hadn't sewn in over a year until the last 3 weeks, didn't know if I could. I finished seating cushions and pillows for an antique wood sofa. It was slow going, It took a tough 3 weeks to do what I used to be able to do in an easy 3 days, BUT, I did it, and I did it smart. My husband tied the springs, I used a timer to stop and start, massaged twice a day instead of nightly, wore that hateful glove thing with my sleeve, my oven mitt sleeve at night, and only worked on it every other day. The sofa weighs a ton so I can't help move it, it's still in the dining room. BUT, it's finished and I have no swelling. There is even a bonus to this, the sofa is still in the dining room so I don't have to host Thanksgiving
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Way to go, Susan!! It stinks that we have to pace ourselves so much. I find that to be true with gardening, painting around the house, etc etc. Eventually I get it done,, but it sure takes longer. I recently painted all my bedroom furniture. Each piece has 4 coats on it,, 2 of primer and 2 of paint. I think it took me 5 months to get it all done,,, but it is finally finished and looks great. Had to get help with moving pieces but I did all the painting. Between LE and carpal tunnel it was a challenge!! Now to get to the yard work,,,
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Susan, one of my daughters makes "stained glass" quilts. She pieces shiny silk in rich colors on a fusible backing, then stitches the "lead" lines with bias binding. She uses cathedral windows for her inspiration. They're absolutely stunning. Cutting fabric with a scissors can be a problem for me, but between an electric shears and a wheel cutter I can do most projects without hand strain.
You and Glennie are inspirations, with your mega-projects! Brava! Celebrations (read, "chocolate") are in order!
Binney0 -
So exciting to hear that we are adapting our art projects and crafts to suit our limitations instead of giving up completely.
Please consider posting on the artist thread here on bco. It's not just painting and handiwork but a wide variety of projects. I have posted my dahlia flowers because I consider gardening a work of art as others do.
We would love to see furniture reworked. what a craft that is! Quilting is there to.
Cancer and LE can pull us down but being able to show our talents is self building and so positive amongst these stupid diseases.
Binney....there is inspirational poetry posted to.... Hint, hint, get pen out!
Susan....why not showcase some of your glass projects there.
Your all so smart in learning how to pace yourself..that is a steep learning curve as we all want to quickly finish our projects so we can start another one.
On that note I will go out now to putter on my dahlias as it's sunny and I have to winterized them, Yes... I will put on a old glove, first pump and deep breath and take it slow. Then come in and rest arm. maybe even practice wrap if my arm needs it.
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Anyone want to vent...this is the place. I really dislike weightlifting with my glove ...it gets dirty and germs up from all the equipment. I put a weightlifting glover over my glove but it's not comfortable...grrrrrrrrrrr......grrr. Grrr.
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Help ladies - LE is in control atm even though I managed to get tendonitis in my arm/shoulder. Sleeve hurts but what should I do and not do?? Since my last revision, I kind of be really lax with this. I know I need to really be careful. Any ideas?
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Has anyone flown abroad with this condition? I have a very mild form of it and do my exercises etc. I don't want it to turn into a full blown condition, but I'm flying to Paris at the end of March and I've been looking forward to it. Some have told me it's fine, just raise your arm often and clench unclench your fist, plus get up and walk whenever you can. Anyone have anything to add to that?'
PS - I have a sleeve, no gauntlet. Should I get one of those?
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oooo, Paris!! How lovely!! I have not flown that far, but my understanding is that a gauntlet is recommended with the sleeve. I wear one when I fly. And hydration, walking, fist pumps, etc. Take extra care with handling the baggage too. Find a nice man to put your bag in the overhead for you!
Gma,,,, I don't know what to tell you. Hope others pop on with advice.
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hi there I have slight lymphedema in my left arm I was given a sleeve at first then down to a glove the nurse said I had about equal fluid to fit in a can of coke so not too bad also have a trigger finger bought on with letrozole. I have flown numerous times since my ok and always wear my glove to travel it's been absolutely fine my longest flight was 4 and a half he's I usually go on a two hr flight. Hope this helps regards sandylo x
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hi there I have slight lymphedema in my left arm I was given a sleeve at first then down to a glove the nurse said I had about equal fluid to fit in a can of coke so not too bad also have a trigger finger bought on with letrozole. I have flown numerous times since my op and always wear my glove to travel it's been absolutely fine my longest flight was 4 and a half hrs I usually go on a two hr flight. Hope this helps regards sandylo x
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Hello HomeMom
I had LE just once, about a year after surgery, due to overuse of my arm.
I have not had any flares since, but always wear my sleeve when flying, I take along my gauntlet but have not used it for flights. My destination, sometimes via Paris, (have fun), is Denmark, so it's a long flight from Central Texas. Last year my doctor suggested Ped stockings as well for the legs, but I am an older woman, so that could be why, and I must say my legs and arm weathered the flights fine. I is possible for you to contact your therapist and ask about the need for a gauntlet or a glove?
Have a great time in Paris.
Dsgirl
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I was told by my BS' NP pre-op that if I was getting “only" a SNB rather than ALND my chances of getting LE were remote (2-6%) yet I got cording and LE after radiation anyway--despite having only 4 nodes removed. The NP prescribed a sleeve & gauntlet, knowing I had a cruise requiring a flight to Europe coming up in Dec. I wore them (donning them 1 hr before and doffing 1 hr after landing) for the transatlantic legs of the flights--even though they prevented arm and hand swelling, I still got finger swelling. I had no symptoms on the ground at sea level or on the cruise ship, but got upper arm swelling in the mountains of Sicily that resolved itself as we descended towards our ship. I visited an LE specialist (Dr. Joseph Feldman) who said I shouldn't have been prescribed compression but then prescribed a glove for flying & upper body exercise, reasoning that since I described having any symptoms, despite no difference in measurements I was at least at stage 0. He also prescribed twice-weekly therapy, which I've been getting for a month now and will for another two weeks. I have another European trip (London, Lausanne, Paris) coming up next month; I will wear sleeve and glove for both the transatlantic flights and even the short hops. For the train, I may wear them preventively for the stretches going through the Alps.
I have had several flares (going through one right now due to hours of typing wearing my MedicAlert bracelet) since beginning therapy--the worst of which was caused by lifting heavy guitar cases and grating hard cheese. I am a musician, and have been instructed to wear compression when playing guitar. Can't play with a full-length glove: my fingers are so short to begin with that the only non-custom glove I can comfortably (and functionally) wear is a Juzo. (Bought a LympheDivas tattoo-pattern sleeve-glove set to wear for performing, but the fingers on even their Small glove extend way past my own fingertips and I was advised to neither fold them (double compression) nor cut them (unraveling), so I had to exchange it for a gauntlet, which I've found I can fingerpick while wearing it.
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I felt so relieved to find someone else who is angry!!!
I'm also angry and hate this disease. I was coming to terms with loss of my breast....but ...it was fact that it looks like my main hobby /passion has also been affected that I have been finding really hard to come to terms with too... everything seems now to be in terms of 'before cancer' and 'after cancer'.. life aint fair.
Just have to keep praying ? things will improve ?
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Sandrabob, many of us are angry, in spurts. I've now had LE for 15 months. There are times when LE is no big deal then there are times when it is. I've read here that there times when it is a huge deal.
I used to make stained glass windows and now I can't, it's to risky my last design before cancer is now my avatar. It's just the way it is and coping with it becomes easier with time.
I'm not angry I have LE, I'm angry that 2 navigators, and 2 surgeons told me before surgery that women in my shape don't get LE. One of the navigators said I haven't seen anyone in a sleeve in years. I have figured that out, she doesn't follow up with patients after surgery and radiation. I feel as though I was treated like a child, sort of like, if they had told me the truth I might not have surgery, which I don't believe anyone would really choose. I was not properly informed and it pi$$es me off!
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I was given two sleeves from the OT but no gauntlets. Where can you get one without a script?? What hoops do i need to jump through.
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Do you have a shop near you? You don't need an RX to buy them,,, just for insurance reimbursement,, and oh,, my local shop says if you have RX, then they won't charge you tax on them. You would need to have your hand measured to get the right size.
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Thanks glennie, I'll look into it!
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Profound depression today for the loss of who I once was - before chemopause, 25 lb weight gain, before an ugly swollen arm, a breast that falls out of the pocket into my armpit...people used to listen when I talked and always asked me for food and fitness advice. Now I'm a hopeless swollen fatso.
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Mariasnow,
I can understand why you feel as you do right now. Let's add that it too is February.
Areyou PS going to do a revision on your breast?
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Well went to my PT for evaluation yesterday - Physical therapist said it is Rotator cuff tendonitis with impingement. Not to do any "mid-level activities". Then he named off things like vacuuming, laundry, washing dishes, stretching across my desk, picking up heavy items etc. LOL. Yeah, right... Need to take computer breaks every half hour and limit my knitting to a half hour at a time too. 4 weeks of this is not going to be fun.. doing therapy and slow slow paced exercise/stretches to strengthen the weak muscles. The Lord must be trying to teach me patience again...
That being said - The desk reaching is the worst - 2 keyboards and mice. I have had to have everything elevated because of the lymphedema and now I have to un-elevate everything. I trade one issue for another.. I hope the lymphedema doesn't flare. I went to my LE therapist and got a base measurement to keep things in check. Haven't had any extra swell since summer. He is using electric stem for one of my exercises. Hoping it isn't going to cause trouble. I'm really nervous about an LE flare, but I have to get the shoulder working again.
Anyone else been through PT while fighting LE?
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GMaFoley - I went through the same thing. Didn't really call it rotator cuff tendonitis, but I absolutely had shoulder impingement and severe lack of range of motion. My PT was awesome. With soft tissue work, and some exercises )AND a cortisone shot) I have almost all of my ROM back and the impingement is gone.
One thing she did for me was isolate the muscle at the back of my shoulder - she showed me where it was and explained that contracting it would retract the muscle that was causing me pain. Once I had that muscle isolated I was able to be very aware of it during every day activities - that helped me tremendously.
I am also sure that the cortisone shot (which hurts like hell at first) helped me a lot....
Sorry you are dealing with this. You are right - if it's not one thing it's another!
Jen
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GMAfoley same thing as Jen. I went through radiation with it. When I complained that I couldn't get my arm in the position it needed to be in for the radiation due to the pain my in shoulder, my doctor brought in a social worker, the doctor thought I was trying to postpone my radiation because I was suicidal. It still makes me laugh, I used to work with suicidal teens, there was nothing in my behavior that said anything other than "I'm in Pain". When the social worker suggested something akin to 1970's aura cleansing I couldn't stop laughing. Made it through radiation on muscle relaxers and pain meds.
My shoulder problem wasn't diagnosed until weeks after I started LE therapy. The PT for my shoulder worked great and I was completely healed within 3 weeks. It didn't cause any problems for my LE.
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