GRRRRRRRRR I HATE LE..........
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Good to know, Minus. Keep us posted on your progress.
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New to me also, MinusTwo--really looking forward to your on-going report!
Hugs,
Binney0 -
My PT used cupping on my lower arm. I am not sure how approved it was. She told me she bought the kit on line for about $20. This was in September. She only did it twice. But I did improve a lot over the course I went through with her. I shouldn't have let it get so bad before I went back for it. It was gentle. I never got a mark from it. She told me that at the last LE conference (which was the national one, forget where she said it was) she was at they talked about using cupping. I go to UPENN. I am not sure how much the cupping helped compared to the massage and bandaging, but my skin was very hard and it got back to normal.
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I've since spent some time on line looking at cupping now. Apparently there are massage therapists (not specifically LE trained) who do this to "disburse stagnation, relieve inflammation, and for vaso-dilation". It supposedly can also soften scars & move old, dried blood that has collected under the skin. One massage tech even said that a "dowager's hump" is really just collected dead matter that pushes your neck forward and it can be moved out. Most seem to put on multiple cups. For the athletes we've seen, it is apparently deep tissue massage
The machine that my LE PT used appears to be different. It only moves the skin just like MLD does. There is one cup that the therapist places on the skin following the natural drainage pathways. It was only a very quick 'pinch' where I was swollen w/lymph. It was almost instantaneous and not painful. I didn't feel it at all where the tissue/skin was normal. I know there were two sizes of cups. She used a smaller one around my breasts & sternum than on my side trunk, but only one used at a time. It doesn't pull up the skin like the you tube videos I've seen. Here's what she responded to my email.
"The name of the machine is Physiotouch and it's from Finland. Only few clinics in the US have it. Before MDAnderson, I know Mayo Clinic had it."
She's worked me in for another session on 2/1 so I will report further.
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Tessu lives in Finland. Wonder if she has had the cupping therapy.
I've had cupping as part of an acupuncture treatment years ago,, but it was multiple cups which left a temporary mark on the skin. Nothing like what you have described. Must research!
Edited: Found this vid on YouTube. MinusTwo, is this what it is like? https://www.youtube.com/watch?v=_NbJ7fmdEgU
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Can I ask what caused your LE? SLNB, Chemo, MX, or Radiation. I currently have a drain from complications of SLNB and I'm concerned it will get worse. Thanks!
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Glennie - The cup was considerably smaller. If there was a high pressure level of suction more than the feather touch of MLD, I was unaware of it.
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tapwhite - below is the link to a great site that several of the women on BCO were instrumental in creating. You can find find considerable information there.
http://www.stepup-speakout.org/
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Jumping in to! I'd like to know more about this.
As a reminder and as minustwo reports,this sounds like a different kind of cupping that we hear about. I don't think I would do the regular cupping as it leaves trauma (bruising) to the site encouraging lymph to move in.
Happy to hear that MDanderson is employing the lighter cupping. As a hospital with such a good reputation they must know what their doing.
I look forward to more info
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Hi friends,
When strangers inquired about my fat arm, I just smiled, and with a straight face said, "It because of my BALLgladder" and then either changed the topic or excused myself because my "ballgladder" was acting up.
LOL
Love to all.
P.S. my lymphedema was from an arm procedure. My BCS is still being scheduled.
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monet. I love it! I tried shark bite once but the inquiring guy asked more about my shark bite then I said I'd tell you more but you don't have time. Excitedly he said, oh yes I do! UGH.........!
Sometimes I just say cancer and stare at them making them burn with embarrassment for not minding their own business
Other times I have the patience to educate them. All depends what mood I'm in.
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Hi ladies, I have just been diagnosed with LE of the breast, armpit and back. I'm only 10 weeks out from my surgery where Dr. Nincompoop put drains and implants in my armpits. Only had 1 SLNB but here I am.
I'm in Los Angeles and need my implants out ASAP. I to find need a surgeon that is also trained to PROTECT the lymphs during this procedure. I know Dr. Marga Massey is the best for this (BTW I would fly to Charleston but I have ear barotrauma from hyperbaric oxygen tank treaments and have been told not to fly or go to mountains).
Hoping you ladies might know a surgeon on West Coast that would be good for me.
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Renee, I'm sorry this happened to you. The removal of lymph nodes is not always the cause of LE. I only had two nodes removed and I have it too. Its good you are getting treated early. My PT said any surgery can cause LE, even if lymph nodes are not removed, because surgery can change the path of lymph fluids. There was a man being seen the same time as me. He had LE from rotator cuff surgery.
Your implants have drifted to your armpits? That sounds terrible. I hope you can get that fixed soon.
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handling small parts at work is a bit of a problem with sausage fingers. also tend to drop tools if not watching my hand all the time. of corse, 21 lymph nodes on the left side along with the mastectomy of my left breast, and I am left handed too. lymphedema sleeves and gloves are available on line. my son and daughter learned to do the lymph wrap, so when I have to wrap to get rid of excess, I don't have to fumble around too much. sure makes spell check and the back space key used a lot, why no lymphedema keyboards?
Guys get breast cancer too.
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Cliff - sorry you have to join us. I've seen your new posts on a number of threads today. It would help if you could go to 'my profile' and fill in your diagnosis and treatment information.
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Cliff - thanks for adding your specs. You are welcome here anytime.
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Cliff. Welcome and yes guys do get BC so your not alone.you have come to the best place for le help on the net. We will try to answer any questions you have. We have some real experienced girls here. Your right ....LE sucks when you work, but don't get discouraged even if your slower,your boss should realize that your doing your best job. Ask if you can have accommodations to make it easier if you wish. Do check in with your LE therapist if work is causing extra swell.
You can try dictation if typing is hard to do. My iPhone has it and it's user friendly.
As a note on encouragement I attended a le seminar with a man that had both arms in sleeves and gloves. (Do yourself a favour and order black not beige sleeves and they won't look so medical like but athletic instead. Remember to remind your sleeve fitter that black always fits tighter due to dying process though) the manhad a great attitude and just marched on with life. Do your self care daily to avoid progression. This is a must. It's a steep learning curve but we will help you. No question here is dumb. Go for it Cliff!
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fortunately I have an easy job, no heavy lifting or such, I am he facilities electronic repair show for spirit aerosystems in wichita ks. I was thinking of retiring just a couple of months before the cancer mess started due to loosing the feeling in my hands due to diabetes, the reason I missed the lump I am very glad I didnt now. I hate both cancer and lymphedema..now both as well as congestive heart failure are trying to keep me from enjoying my new granddaughter..
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Hi, Cliff,
There is a sort of Lymphedema keyboard. That is, there's a one-handed keyboard modification available on some computer programs (Windows, for sure). It's called DVORAK, and can be adjusted for either right or left hand. It takes some effort to get used to, but generally a couple of weeks of practicing will get you up to speed. I've never used it because I have a separate one-hand-only keypad called a FrogPad that is unfortunately no longer available. Efficient one-handed typing has been a real boon to me.
Check out the Radiation-Induced Brachial Plexopathy page at StepUp-SpeakOut.org for other one-hand-only coping tips:
http://www.stepup-speakout.org/Radiation_Induced_B...
Be well!
Binney0 -
Hate to burst anyone’s bubble but dowager’s hump, aka kyphosis, is a degenerative spinal disorder of old age—accelerated by osteoporosis/osteopenia (and possibly by years of lousy posture—maybe Mom was right when she told us to “sit up straight” as kids; also poor ergonomics and tilting the head down instead of just lowering your gaze when online or using mobile devices could contribute). But the biggest factor in developing kyphosis? Heredity. Sorry, gals. (And remember that not all massage therapists have proper anatomical instruction).
Cliff, LympheDivas has a line called LympheDudes with some edgy tat patterns if you want to bring out your inner hipster.
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Sandy - of course I was only parroting what the YouTube video said. I don't for a minute believe half of what I hear. Or what I read anymore. Must be an 'alternate fact' - LOL
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Cliff - I see that you are DCIS but Stage IV. I readily admit that I don't know much about DCIS - only what I've read. It was my understanding that DCIS would be Stage 0 as it is 'In Situ'. Higher Stages become considered IDC as no longer 'In Situ' but are 'Invasive/Infiltating'. Especially if Stage IV as there are then metastis to other areas.
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Cliff, I have to agree with Kicks. DCIS cannot be Stage IV at initial diagnosis—it is Stage 0 because it is “in situ," or confined to the duct. (In very rare cases, micromets not removed surgically, killed by chemo or radiation, or starved by hormone therapy can mutate years later to become invasive and then metastasize). But you cannot simultaneously be initially diagnosed as both DCIS and Stage IV—the terms are mutually exclusive. If it has metastasized, then it is not “in situ" but rather by definition “invasive." Therefore, if it's ductal carcinoma and has escaped from the duct, it is “invasive ductal carcinoma," or “IDC." Did your doctor or path report tell you just “ductal carcinoma" and you assumed it was DCIS because that's the form that's gotten so much press over the past couple of years? Or were you originally diagnosed much earlier with DCIS but the March 2016 Stage IV diagnosis is a later one? Did the post-mastectomy final diagnostic path report find DCIS but not “pure DCIS?" What was the cytology & histology of the bone biopsy? Might you have had DCIS in your breast, but a different primary tumor in the bone (i.e., is the “bone mets" in reality a cancer that originated in the bone, i.e., “osteogenic")?
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ChiSandy brought up a good point - not every cancer that may develope after a BC DX are metastis. I know for myself, I've had 2 SCC's (Squamous Cell Carcinoma) and 1 BCC (Basal Cell Carcinoma) - the path. reports clearly state that they were SCC and BCC with no signs of being IBC mets.
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I am not sure what dcis means. I know that after my mastectomy and lymphectomy, I was finally told that my cancer was stage 4 and had spread to a rib and the base of my spine. before the surgery, I was told it was stage 3. fortunately tamocifan seems to be working for almost a year now.
I will dig out the final report and look it up. after all, I am an old guy and don't remember so well now.
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cliff, I am so excited that you can have joy in being with your granddaughter. There is no better feeling than cooing and googlie eyeing a baby, They are so much entertainment with each stage they grow thru. No disease that you suffer with will ever stop you from sharing your love with her.
Cliff if your getting hot flashes and night sweats from tamoxifen then go buy a cheap wick away tee shirt. Costco has them. Sleep in it as it absorbs sweat and keeps you fairly dry. It also drys quickly for the next sweat out. Also slip one wick away tee inside out on your pillow case and it with absorb head and neck sweats so your pillow stays dry. Hey we have all the tricks in the book here just ask! Also tamoxifen threads are helpful.
Meanwhile if your bandages are snagging and loosening at work try cutting off a tall loose knee high sock at the heel and slip the tube part over your hand and work it up to your armpit tucking the top of the sock under your bandages.
You can either cut a hole for your thumb and get coverage for your hand or get coverage for wrist to armpit. Your choice. It may or may not work for you. Gotta try! We have to adapt to beat this stinking LE!
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Hugs, thanks for the suggestions I will try that..
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Here's my updated report on the Physiotouch from Finland. It apparently started use for LE at hospitals/med centers like MDAnderson & Mayo Clinic. (see post of 1/27) MDA has had their machine about 5 months.
My LE/PT says that her patients are reporting less pain from LE. The areas treated are certainly softer and much more 'pliable'. Personally my swelling is down considerably. I have truncal & breast LE. Sorry I forgot to ask if if they use if for arms (or legs for that matter). There is one cup and she's always moving the cup along to follow the pattern of the lymph flow. Suction is usually at the standard pressure of 80 mmhg (mil/mercury if I got that right). No cups are left in place and there are no suction marks. Where the area is swollen or tight, I feel just a tiny pinch with the suction. Areas that she's worked on three times now no longer have any pinch. Of course we all know that it's a continual process since LE doesn't disappear or go away.
My RO has authorized treatments for 60 days. This is for combined LE and radiation fibrosis. In the middle of these visits I am flying to WA (over 5 hours) & eventually flying back from OR. Of course I'll wear my sleeves & gauntlets - and probably my heavy duty Belisse Compression Bra, instead of the Wear Ease 'Sydney' compression bras that I wear 24/7. I feel more comfortable making the trip knowing I have an appointment in place for week after I get back.
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minustwo thx so much for info keep informing us as you go along with the new treatment
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LE is a new problem for me, 25 years after I first had BC, it has returned with Mets to my lung. Now I have LE and I'm having trouble with the compression sleeve being so uncomfortable after only a few hours. The first one was very tight so I have the next size up. I still have problems wearing it for more than a few hours. Besides being tight the top of the sleeve has small rubber nubs to keep it from slipping. These make my arm itch like crazy. I'm using a Juzo sleeve. Has anyone found a more. comfortable sleeve that doesn't cause itching? We have to fly to Idaho in May and I can't imagine keeping it on for so long. The therapist said you should put it on before the flight and not take it off for 4-5 hours after. Is that what everyone else has been told? Have you flown without wearing the sleeve and what happens if you do?
Breast cancer the gift that gift that keeps on giving. GR rrrrrrrr I hate LE
Faith (in the future)
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