GRRRRRRRRR I HATE LE..........
Comments
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Question: If you don't see a reduction from swelling, does that mean you aren't doing your MLD correctly? Does self MLD usually reduce swelling in the breast and axillary??
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MLD works well for me. I drink lots of water, elevate my arm at night, and stretch frequently during the day.
For those rare times the swelling persists, I wrap and/or use the Flexi-Touch.
I do see a LE trained massage therapist every other week and my LE is (currently) well controlled.
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I do MLD daily but see no visible reduction. Maybe it's keeping things from worsening. I'm not going to stop MLD to find out.
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I'm not convinced anything helps, except wrapping............only way I ever get any result............and that is a pain in the ass.....................can't do anything involving water.................all the questions from "stupid people",................and just the fact that "cancer wasn't enough"..........................as I always say "does it ever end"................................yea, when the close the lid...............me and my LE arm, scar tissue boob (what's left of it), my one boob looking at the ceiling...........while the other looks at the floor, aches, pains, swollen legs, thinning hair, ...........will all be gone, but then "so will I".................real consolation that is.......................
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I find when I do MLD before bed, I look pretty good first thing in the morning... Then I stand up and the swelling starts..I am at the point the only thing I can wear is those Lovely
expand-a-band breast binders.. My neck arthritis has flared so any sports bra hurts the shoulders... not sure what to do - swelling is slowly coming down... that brings a question - can you do PT on the neck and not flare the LE?0 -
I start back at the fabric store today - so my schedule is double jobs on friday... 46 hours a week.. breast still hurts, but it is the lymphedema... got to go back to my LE therapist and the swelling is back down... so hoping today is a good day...
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Gma, take it easy as you can!
Have a good day,
Binney0 -
JO-5, thanks for the information. I went to my PT today and he did some massage on my cord and also did the MLD. After having me do some exercise, he had me use the pump. Does the pump help anyone? I've only used it twice, but he made some suggestion about getting one of these. Any opinions??0
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JO-5, my new PT mentioned the pump and when I saw the entire contraption I thought he's got to be kidding. I've been doing MLD, some compression, etc. stuff since this began at the end of May, but I've never seen the breast go down much. PT said it's a lot of trial and error. My RO even had me trying Trental and Vitamin E. All that did was give me a headache and feel like I was getting nothing out of six pills a day.
I've been told that some reduction may happen in time, but that I may have to just know this is where I'm at and to try to protect my arm so it doesn't go there too. Still wondering if I should get the pump? My insurance pays 100% for durable medical equipment. My copays are big so if I could do something at home instead of driving out to this PT that could be a plus and save me money. I only wish my various bras and pads could be a deduction on my taxes :-).
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Rockym - I use the Flexi-Touch but only as needed. To me that means when I can't get my arm to respond to exercise, MLD, elevation and hydration. Used it this summer when it was so hot since that made my arm unhappy.
When I use the pump I do complete MLD first, then Flexi-Touch (66 minute cycle), then complete MLD to follow. My Flexi-Touch covers the trunk-thigh, the chest on the affected side, and the arm. It is not uncomfortable. Most times I find it relaxing so I usually do it at night time unless my arm is achy and I don't want to wait.
I may use it 1-2 times a week then not again for 2-3 weeks. It's there when I need it and I think it is beneficial as an additional tool. I take it with me when I travel for my job. I don't want to be across the country, have swelling from fight, etc. and not have the tools I know work to control the LE.
My insurance covered it 100%. Tactile industries is the company that sells it and they actually submitted a letter of necessity to my insurance to get it approved. They had some info from the PT and then called me for more info. If you pursue the Flexi-touch do it soon. Tactile gets busy towards year end and they get behind writing letters to the insurance. Since I already met my deductible last year, I had to push them to get the letter submitted so everything could get turned before years end.
If you can get it covered I'd encourage you to go for it. I like the security of having all the tools I need when I need them.
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I have chest wall/truncal and arm LE.
On December 14, I will be having lymph node transfer along with Stage 2 of SGAP natural breast reconstruction surgery with Dr. Kline (& Dr. Craigie and an oncologic surgeon assisting). Surgery will be in Charleston, SC at East Cooper Hospital.
Here is a link (dated 18 months ago) with a nice explanation and discussion regarding lymph node transfer in their "Ask the Doctor" column on their website.
There is mention about Dr. Becker in the main answer and in the comments as well.
http://breastreconstructionnetwork.com/what-are-my-options-if-i-develop-lymphedema/
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Hi Ladies - I did ok at work - boss gave me stocking light things - type of job, but I did have to help a couple of people with heavy bolts and cutting... I got to the 4th hour and thought I was going to collapse but survived through my 5.5 hours..
My arms are looking better. The swelling is now mainly in the breast... Looks great in the morning, then I stand up LOL... enough said I think.
DH and I were driving home from church this morning and drove by the old softball fields where I used to play coed softball... I haven't played since my DX... When do you stop letting the lymphedema rule your life and do the things you used to do??? Archaeology digging is the same way... I will never be able to do those things again... will I???
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JO-5 and ohio4me, thanks for the info on the pumps. I have no idea if that is one of the routes I will take, but the more information the better. I wish I could see my breast and trunk go down some as that would give me hope and I would know what direction to go. Since nothing has helped yet, I'm still in the trial and error phase.0
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Rockym, I know the feeling.. It sure seems to take awhile and when something starts working, I find things change like my belly started swelling when I got the swelling down in the breast - sometimes it seems no matter what you do its a surprise where the swelling appears... BTW - I'm fairly new at this too. At this point, my arms look good.. trunk and breast .. better but really hard to keep the swelling down.. Hoping to start some sort of walking this week.. I hope that helps and doesn't swell the arms back up..
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What am I doing wrong??? The belly is swollen again 0
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Ok NVM - my belly is fine again - saw my LE therapist yesterday LOL - I guess I'm going to ask my pcp about my good arm when I go in for my "checkup" - The swelling is up in all the measurements except in the wrist.. I feel like a yo-yo and LE therapist feels being after MLD it goes down, so it is most probably LE but can't find any rhyme or reason for it to do what it is doing... He told me to ask you all LOL.... but then said, it would probably be a good idea to ask the docs to rule out anything else. And, No, Binney - this time I'm not going to Urgent Care - just can't take them again!!!! 3 times in one month is enough!
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Gma, remind me--is your therapist wrapping your arm after MLD? How often are you seeing him?
Binney0 -
just checkin in to give my weekly GRRRRRR I hate LE
Maggie
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No wrapping - just MLD - he doesn't want to wrap the good side until I get it confirmed from doc whether it is LE or something else - I only have mild LE in trunk and has moved to the upper arms so my LE side I have sleeve and gauntlet for work and exercise.. Just started back a week ago since my surgery.. But Monday my good arm measurements were up from last week except for the wrist..0
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I started walking again - major breast pain both days but worse today - been going on for an hour and a half - stabbing sharp pain.... How do you elevate a boob while you are trying to do your job on the computer??? I found a dog-bone pillow and put it under.. LE therapist said being all my swelling starts in the morning when I get up, I need to lie down... got 3 hours to go.. I can do this.. 0
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Hey ladies, just want to say I missed you and have spent the past 2 weeks catching up on your posts. Know I can't stay away so long again.
Have to say that I really think this thread is the heart of the LE discussion board. I have a new GRRRRRRR (or two) but need to post a question first. That's what I got on to do 2 weeks ago, but just kept reading instead!
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think I have some cording in my left arm. new in the last few weeks so coupled with the weakness and pain in the arm, called the PT person I saw about 3 years ago.
explained all to her so seeing her next week to get a preventive/maintenance plan. I confess that I never kept up with the recommendations she had given me years ago as it was nothing more than minor swelling in the boobie
I know dumb me but she said it is good I am being proactive now. I have been lifting weights since my rads ended 4 years ago but of late, keeping them very very light, she thought that has been a good idea but I feel like it is not enough as moving backward
GRRRRRRRRRR......
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Cording runs up and down the arm? It doesn't run sideways, does it? I have some sort of thing still going on with my bad arm but it seems to run more sideways than up and down?
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http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Here is a link to Axillary Webbing/Cording info on Step Up Speak Out (Lymphedema awareness website). It has good illustrations and pictures about cording.
Cording has been a NIGHTMARE for me since my first surgery 14 months ago.
They say lymphedema is Breast Cancer's dirty little secret. Cording (for me) earns that definition as well. It the surgeons, oncs, etc, don't have their head in the sand about LE, they still do about cording . . .
Hope you can find relief from it and an experienced, well-certified PT-CLT.
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I put this one on my new topic - "Doctor confusion: What the doctor says and what the doctor means":
Here's a new one LOL - I talked to my surgeon's office about my good arm swelling - Surgeon gets back to me and says its probably the LE, Have your LE therapist treat it as such. if you are still concerned, call me next week. What he was REALLY saying is that he is on his way out the door on vacation and he will deal with it when he gets back...
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yeap, cording is up and down, or at least mine is...mine looks like the photos I have seen on line although not as bad....so time is now to do some preventive whatever stuff
interesting docs do not believe it? my arm I swear is weaker and actually I think a bit thinner. I lowered my weights till I see the therapist next week.
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Pink Heart...you are soooo right. No one knows a thing about cording at all! My cording in my better arm...only one lymph node gone has been so bad. It runs all the way through the wrist and into the hand. I have no swelling in the hand (yet) but man does it hurt. I have gone back to Zumba now and hate the sleeves when doing aerobics...so hot I feel like I just might pass out.
Maggie
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Ok, Got another question for all ladies with LE in both arms - GRRRRRR - Suggested by the surgeon to treat my good swollen arm as if it is LE until I know otherwise... Went to get labwork done and asked the tech what do you do IF I have LE in both arms - she says we take it anyway and let your doc know... I asked,"Cant you take it elsewhere my arm really hurts today?" Tech Says, "sorry only arms are allowed - you have to go to the surgery center and have an order from the doc to take it elsewhere.. I can't do that." This really Sucks - surgery center charges you about 500 to walk through the front door!!!!! no insurance here - guess I won't be doing any more labs until we figure out what is going on with my good arm. 0
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Gma, you do have to have the doctor write "draw from foot only" on the order sheet or they really can't do it. I take the order sheet in (never call, never ask, because they'll say no) and just assume they'll do it, and so far they always do, at several different places. When I first started with the LE I called around and there was no one who said they'd do it, but I just figured if I had no arms they'd figure out something else, and sure enough they do.
You shouldn't pay extra just because you can't use your arms, so stick to your guns. In a pinch, have your doctor call them.
Let us know how it goes!
Binney0 -
Gma--My PCP has a standing order with my lab for a foot draw if necessary. Sometimes they cannot get a good draw from my good arm. I have had no argument as long as I am not diabetic. But they will not do it w/o the order.
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