GRRRRRRRRR I HATE LE..........
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ROFLMAO with the whole PEPTO mess up Binny...............ROF !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! GREAT! Thanks for the giggle today...... I needed it........
Peace....Love and Bubble Gum!
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LOL!! Good thing I didn't try the pink stuff! Who knows what would have happened!!
(or maybe it would have been a new invention!) 0 -
Hey, I just assumed Binney knew what the heck she was talking about b/c she's so dang smart!!!!!!!!!
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Yep, we all would have been slathered in pink stuff....I kind of wondered about the Peptobismol--it has salicyilate and bismuth in it, but it's BINNEY--she knows everything!
When my dear, departed horse got minor episodes of colic, he would get a half a container of peptobismol at the first sign of pain, and as a white horse--he would walk around with bright pink lips.
If anyone tried it, let us know.
Kira
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white horse and pink lips! LOL!
Would loved to have seen that!thanks for the weather info. strange. my mx scars hurt deep within today too.
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D-H
Me too about the weather. Have finally learned to pay attention when a low pressure system moves in and take extra good care of my arm. It helps!
Deb
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sisterinspirit - good to know. just something else to think about but it is encouraging to know that if you take extra care it helps. thank you!
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Hey, I am the one that said Pepto Bismol and honest that is what my therapist used! The first day when she wrapped me I wondered what it was doing on the cart and wondered if this wrapping stuff was going to give me a stomach ache. But she says that is what they use. After it dried I could not smell it. I will ask her tomorrow why they do not use MOM. This LE world gets crazier and crazier...... Becky
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Becky, too funny! I didn't even go back to read where that came up, just thought I'd had a complete brain blank-out. But I think I'll restrict my use of Pepto Bismol to October, when the whole world turns pink anyway.
Kira, how on earth did you get half a bottle of it down your horse?! Bleeeeack!
Looking forward to your therapist's explanation tomorrow, Becky!
Binney0 -
Stay away from the pink stuff Binney if you already see pink in Ocotober. My world turns red, yellow and much more colorful than pink in October. Where are you anyway? In flamingo land? Becky
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as for the pink stuff; my chiuahuas have pretty finicky stomachs, they get it reg. and they LOVE it!! just a note... 3jays
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Becky, let us know what your LE therapist says!! I have both Pepto and MOM here, should do a side by side comparison test. LOL!!
white horse, pink lips.
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Better than a pink horse with white lips!
Leah
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Okay Springtime, et al: My therapist says it was what they were told to use when they had training in taping. Some ingredient helps keep the tape from irritating. Salicyte or something. She had not heard of MOM at all. Says maybe it has some similar ingredient. The PB leaves an oily coating like lotion and also makes the tape easier to remove. It did not leave pink after it dried and I could not smell it all day like I was afraid would happen. Yes, we have to have someone try both. She did make a lame joke that maybe they were using pink as that is the color to promote a cure for breast cancer! She did not have me put a whole lot on. Just enough to coat. I wonder how I got into all of this. Now we are feeding it to dogs and horses!!! ANYWAY, I did not have any problem with it nor any redness or irritation. And usually tape bothers me. I still have a scar from the tape used after my surgery. And the next topic please......Becky 0
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I too still have a scar from the tape...i had my last surgery i sept.2010.thats never gonna go away.wonderful...another gift from bc.thanks for nothing.I hate you.
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So here is a question...how often do you see your therapist ideally?
It seems like everyone is keen to discharge me. At MSK, I can't remember, maybe they wanted to get to see you once or twice a year???? My new place really doesn't want to see me for three months.
Do most of you end up in a private pay situation?
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Cookie, I have a LE therapist: LANA certified, worked with Robert Lerner MD, Guenter Klose, Steve Norton and Joe Zuther when they had their intensive LE clinic in NYC--Kathleen Francis knows her and tells me how lucky I am:
But, she's an LMT in private practice, and no insurance covers her, but her fee is close to my copay when she was at the hospital clinic, and I see her twice a month for a MLD treatment, measurements and moral support.
We've involved various PT's along the way, and they have been of variable quality (understatement): the last one was good, but had a short course of treatment in mind and told me I could come back every 6 months, but I don't see the need.
So, that's my maintenance plan: my LMT at least twice a month.
PT"s are limited by insurance--if you've plateaued, they have to kick you out, and that's their model any way.
Unfortunately, I see women all the time who have LE that is not controlled, and they say "But I went to the PT!" Yep, and she/he didn't schedule a follow up, and they sure didn't cure you, or even give you the full set of skills to manage this on your own.
Off the soap box now.
Kira
Becky--here's the link to the full article on breast/trunk LE--THANK YOU for telling me about it
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kira - I am glad I saw your post. My LE 'kicked me out' (because I was better - good thing!) last week. She doesn't do private practice but there is a woman who is certified through the big cancer center here that I have seen a couple times and I think I will make standing appts to see her at least once a month. Good idea.0
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Hi everyone, have not been on in awhile. Survived my chest wall recurance in jan/ feb turned up negative on ultrasound and have had 3 rechecks by BS and Oncology BS....I need to toss this out to you all and see what you think.
I noticed many tapioca like bumps in the back of my arms like where your triceps would be...starting at the top of my armpit/ axilla..and in some areas its just lots of them all together. Some bigger some smaller.... aaarrgggaaahh!
I am trying not to go into the freak mode. But I am wondering if this could have anything to do with LE/ cording resolution. Or should I get thee to a Dr. ( I am so weary of Drs!)
Have had no swells since i shoveled the driveway in january....that lasted 6 weeks. No more shoveling for me.
would love to catch up with you all for some brownies with white chocolate chips
Hope you are all welll and sane and feeling fine.
love to all xoxoxox
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Ladies, thank you for the information. If it wasn't for your help I do not know where I would be. I finished treatments with radiation in Jan '10. Unfortunately I gained weight since then. I always said to my husband, "Isn't it weird that I have all this fat just under where my breast used to be"? Thinking it was some kind of physcological thing that "my fat" was really showing up there. I feel like an idiot that I only recently realized it is trunkel lymphedema. HOW could not one of four doctors mention this to me???
My concern now is the scheduled surgery. I really do want to have two breasts again but is the surgery only going to exacerbate the problem? I am planning a R MX with a left lat flap and TE's.
Did anyone have surgery AFTER they knew of the lymphedema??? I would really appreciate any insight.
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Barbara - the same thing happened to me. I kept gaining weight in my upper belly, just below the bra line, despite working out at least an hour a day (including a lot of core and ab work) and maintaining a healthy diet. I kept griping about it to every doctor I saw - my med onc, my PCP, my surgeon and my plastic surgeon. Not ONE mentioned truncal LE, even though they all knew I already had arm LE. They just commiserated nicely and attributed it to the weight gain s/e of Femara. Two weeks with a certified LE therapist and I lost 2" and 5 pounds. You bet I'm going to mention in on my next visit to those docs.
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Amazing! I have had three visits with this wonderful therapist and have noticed a difference already. I will be seeing all my docs the next couple of weeks and they will be hearing about this. I will be seeing the PS on Friday with questions in hand. Thanks Jo and Mary. Mary, we are almost neighbors. I am in northern Lancaster County, PA.
Still looking for anyone who had surgery AFTER knowing of the LE...
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Hi Neighbor Barbara!
I had 2 DIEP revision surgeries after knowing I had arm LE and they didn't have any impact on the LE. One of those revisions occurred after my "weight gain" started and before my truncal LE was dx, but the "weight gain" didn't get drastically worse after the surgery, so it appears it didn't have any impact. And this was before I was doing MLD and Lebeds for the truncal LE. I had drains placed for both revisions, so they weren't minor revisions. It sounds like your upcoming surgery is more major, so hopefully someone else will chime in. Or you may want to start a new thread to attract the attention of those who are not reading this thread.
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Thanks neighbor. Just knowing there are some who have gone thru surgery after LE gives me a bit more hope that all will turn out well.
What is Lebeds please?
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BarbaraJo,
Lebed is an exercise developed by Sherry Lebed Davis who has LE, here's a link to her site--she sells the DVD--and the first 15 minutes are a wonderful lymphatic opening sequence, and you can mix and match the other exercise portions. She also sells a "class". Before she developed LE she had a dance routine that was originally on VHS (I took it out from my library).
I feel great after doing Lebed, wish I did it more often.
http://www.gohealthysteps.com/
https://www.gohealthysteps.com/store/?productID=3
They also sell the DVD on Amazon.com
Earlier I posted a link to a great article on breast/trunk LE--it might be helpful for your doctors to read it.
Kira
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Lebed is awesome - I can immediately tell a difference after I do it.
I always feel kind of stupid doing it, though...but the ABBA music is great.
I have been mini-tramping (that is where you are sleazy in a small way, as opposed to maxi-tramping. ha ha) on the mini-trampoline and have to say, so far I can't tell a difference. Maybe I'm not mini-tramping enough???????
Anyone? Anyone? Bueller???
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Kira and Suzybell...thanks. I did download the previous LE info this morning. I just glanced over it though. I have a mini tramp too! But I know I have not spent enough time on it. I will have to get these DVD's and keep moving.
Maybe I will not have to worry about LE and reconstruction surgery because I just had a call that my mammo was suspicious and I need a diagnostic mammo. I scheduled for Monday. Also had a call from PS to say a problem with insurance for the surgery!
I think I need to go dig in the dirt or something....
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Barbara,
Digging in the dirt always improves my spirits...hang in there.
I am having the best time in my yard this year - last year I was too weak from surgery/LE to enjoy it, but what a difference a year makes.
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Oh Barbara, waiting is the worse part of any of this. Hope you get good news Monday.
It's been a long cold spring up here, so I'm ready to get outside.
Our dog (my avatar) is half aussie, and she's no longer a digger, but "helps" you garden by dropping her ball in any hole and digging it out and shaking her throw toy in your face. Like gardening with a happy toddler.
Kira
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BarbaraJo, I'm so sorry. Makes my stomach drop through the floor just thinking about you taking that lousy phone call.
Looking forward with you to better news on Monday. Assuming all will be well with both that and the stupid insurance, you might want to ask your surgeon to consult with your LE PT regarding the pre- and post-surgery LE care. Keep us posted, please!Brazos, welcome back! I've never turned down a white chocolate chip brownie in my life!
You do want to check out the "tapioca skin" with your doctor, but a couple of benign thoughts on that would be that I sometimes experience a similar "texture" on my arm and it eases when I get my sleeve off for an hour or two in the evening. I've never really thought about it except that probably my skin is as sick of compression as the rest of me is.
Another thought, at least if you haven't been staying on top of the LE self-care, would be "peau d'orange" -- orange-peel textured skin caused by excessive lymph fluid build up in the underlying tissues. It can be relieved by MLD and adequate compression. We just never get a break from this stuff!!!
Suzie, maybe you're mini-tramping too much. Or with your hands down at your sides the whole time. The idea is to bounce gently without letting your feet leave the mat, for, say, five minutes at a time.
I get to go to a real life Lebed class on Monday evening! One of the cancer centers here is having a Lebed instructor come for an evening of fun exercise. Can't wait! (I did do a Lebed class led by Sherry Lebed once -- quite an experience!
)Be well, all!
Binney0
