GRRRRRRRRR I HATE LE..........
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Astrid, honestly, I would be concerned about that. Itching and discoloration does not sound like LE to me, it sounds more like some kind of infection, but if two different antibiotics didn't help, not sure what to think. Read up on cellulitis, and if you think it might be that, get to the dr sooner rather than later, better safe than sorry.
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Thanks for your concern Jennie. I am 6 weeks into this. Never had fever. I believe they have now ruled out infection of any kind or implant leakage.My nagging worry is also that it is not actually LE..I am seeing specialists at a cancer hospital and this is the way they are leaning with dx. So I thought if others here have similar symptoms with their breast LE it would ease my doubts. I never even knew you could get breast LE till they said this.
Ultrasound today..and back to specialist again on Monday.
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Astrid, kudos to your medical team for being aware of breast lymphedema!
Lymphedema is an inflammatory condition so, especially in the breast, it often mimics infection. It can cause redness, pain, itching and skin changes. When a couple rounds of antibiotic don't affect the condition, and they've cleared the possibility of IBC if they're concerned about that, then the next step would be to see a well-trained lymphedema therapist and begin Complete Decongestive Therapy: a gentle massage technique combined with careful skin care and compression (with special compression bras, camis or tees). More information here:
http://www.stepup-speakout.org/breast_chest_trunck…
Good LE therapy brings relief from swelling and any pain or discomfort, and teaches you how to manage it on-going. It also resolves the redness, though that can take awhile longer. So I'm looking forward with you to real healing soon! Please keep us posted on what you discover.
Gentle hugs,
Binney0 -
Thankyou so much Binney,
So nice to know there is info and solutions available.
much appreciated,
and yes,
will update my progress.
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My Blue Cross and Blue Shield covers the sleeves.
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Wow Pink - where are you located? you're the first one I've ever heard that got sleeves paid for. Maybe compression bras, but I hadn't hear about sleeve benefits.
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I have been getting sleeves paid for by insurance since diagnosed 5 years ago. They pay for night garments too. They'll pay for 2 sleeves and 2 gloves every 6 months and 1 night time garment every 12 months. I think my therapist told me that Medicare wouldn't cover them though even with the same diagnosis and doctors and everything else here. I am in Philadelphia.
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i have Cigna and mine are covered.
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My insurance paid for my sleeves, until I went on Medicare, then no such luck. Luckily, I kind of stocked up before Medicare kicked in.
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I have Highmark Bluecross and my gloves and sleeves are partially covered. I get 3 garments every six months
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Compression sleeves are 75% covered in Ontario under the Assistive Devices Program. The rest is paid by my benefits provider at work (subject to some limits, I think same as Kay G, 2 sets every 6 months). There are also requirements for who has to complete the referral forms, has to be a specialist not a general practitioner. My physio completes the form for the oncologist to sign off. It's also only been in the last 8 or so years that compression garments have been covered for secondary lymphedema, they used to just be covered under the ADP for primary lymphedema
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I have Kaiser and I will get my sleeve once I finish radiation
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Pink, I have BC/BS, too, but haven't figured out where to buy that they will cover. Where do you buy your sleeves?
I'm relieved to know I can wear my sleeves after they get snagged. Working in a vet clinic, it's going to happen, probably a lot.
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Thanks for the responses. I'm on Medicare so that explains the difference.
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Bumping for new LE ladies.
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just wanted you to know I still hate LE... Anyone else! Come on rant because it's healing in the end..let it out girls!!!! AHHHHHH I HATE LE. AHHH I HATE LE. AH I HATE LE....but I LIVE FOR CHOCOLATE. There that's better
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hugz - hate, Hate, HATE LE - but I had a coupon for $5.00 off so I went to See's Candy today and got peanut brittle, victoria toffee and a personally selected 1/2 lb of my favorite chocolates. I was raised in Northern California so for me, there is NO other chocolate that counts.
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minus2....I absolutely agree to sees chocolates yup there is nothing better to sooth the LE woes.
Go for it and eat till your heart desires but do save some for tomorrow. I'm 20 minutes away from a see candy store and I can practically smell it from here. Yum I like salted chocolate Carmel. But got to go easy on the salt
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Oh no, a new flavor I missed - and I love salted carmel. Will I have to make another trek to the mall before Christmas? Oh no.
BTW - I am still really pleased with how my "Sydney" compression bra from WearEase helps to keep my breast & truncal LE under control. I wear one 24/7 and it's pretty enough that I don't feel "medicated". If you get on their email list, they usually have some kind of special every month, whether it's 30% off or free shipping or something. Last month it was buy one/get one free so of course I indulged and just hid the two new ones. I have no stake in the company, just really like the product after trying all kinds.
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I spent 7 years in Seattle. See’s chocolate suckers are like crack. Fannie May doesn’t even come close.
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Does anyone know where to find MLD videos for the hand?
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mltdd: I think this StepUp Speak out site would be a good place to start. I expect people with more experience will jump in later. Good luck.
http://www.stepup-speakout.org/
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mltdd, because the lymphatics are a wide-spread body system, MLD addresses an entire quadrant of your body, not just your hand. If you just massaged your hand the fluid would have nowhere to go, so you start up near your neck to clear the fluid from that area so there's somewhere for the fluid to go. Think of it like a chicken quarter, and the MLD removes excess lymph fluid from one entire wing quarter: hand, arm, chest and back.
To do MLD for your hand, you have to start by clearing the lymph nodes in your neck and axilla, then moving fluid toward those nodes starting with your chest, then your upper arm, elbow area, lower arm, wrist, hand and fingers, always moving the fluid up the arm toward the axilla. Here's a very helpful youtube video to help you with the process:
https://www.youtube.com/watch?v=pSD7j8mSVkMGentle strokes, slow and relaxed. Maybe some slow, soft music will help.
Hope that helps!
Binney0 -
Thanks. this is the first video I've seen that includes the fingers and hand.
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Thanks for this link Binney!
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And especially thanks for the link because on the side is a link to a lecture that I heard once before & could never find again.My comments to my brother below, as well as a link to the You Tube
Speaker: Stanley Rockson, MD, Professor of Lymphatic Research and Medicine, Chief of Consultative Cardiology New And Emerging Treatments for LE
Dr. Stanley Rockson, Director of Stanford Lymphedema clinic
There are a few questions at the beginning that are kind of annoying because you can't hear them, but this lecture is fascinating. Extremely important to note the amount of education that any doctor gets in training - over half get no more than 30 minutes education TOTAL in 4 years. He's saying that most docs are substantially underinformed - which has been my experience. I'm always amazed that there are a few docs who are willing to say that their counterparts don't know anything. And they can actually cause harm because they don't recognize the problem when it's small & can be treated. The lecture is 1hr 20 min. You may not be interested in the last bit, which is research slides & more questions - but I was interested in that part too even if I didn't understand all of it.0 -
Hey experts - here's a new one for me. Anyone else seen this yet?
I went yesterday to see the RO & the LE PT. I'm 2-1/2 years out from last rads, but radiation fibrosis is kicking up again. And unfortunately, my truncal LE is aggravated & swollen too. The PT gave me a new treatment with a machine from Finland that does VERY MILD cupping. They are only trying to move the skin - not like the olympic athletes where they are trying to stimulate deep tissue which left the cup marks on the skin. This is MD Anderson, so I don't think it's just hype or bogus. They are trying to break up the hard places and move the lymph along. Some places just felt like a mild pulling. Others felt like when your skin gets caught in a zipper. And yes, 24 hours later it is much softer and the swelling & pain are both less. I'll report again.
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Interesting, MinusTwo,,,, keep us posted.
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Interesting! Glad you're feeling relief!
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