GRRRRRRRRR I HATE LE..........
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question- Do you ladies that wrap see more benefit from doing the massage more than once a day and re-wrapping? I wrapped my arm this morning and am trying to decide if I should unwrap and re-do just to 'drain' my arm. thanks!
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I saw my LE PT on Wed and she confirmed what I'd been seeing - things are under control (phew). I'm doing exercises most days and MLD at least once a day, wearing my sleeve and gauntlet every day but I'm able to do without wrapping at night. She warned me that with the hot weather coming it might not be as easy to control so I might have to go back to wrapping at night. She also told me that if I felt I needed more treatments in the hot weather that would be no problem.
Kira, I also focused on the ring picture but for a completely different reason. At Orthodox Jewish weddings the ring is placed on the bride's right hand on her forefinger, so I looked at it and it took a few moments for me to figure out why it looked so strange!
Leah
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Leah--do the Orthodox women wear it on their index finger? I have a cousin who became very frum, but I've never looked.
Sounds like you got things under control--that's great! Your LE PT sounds really accommodating. Also great.
Kira
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I no longer wear my wedding ring...which is really special....maybe I will wear it on the right?
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Cookie, my thoughts exactly--it's my left hand, and my wedding ring has been in the jewelery box since 2008. I'm sick of it,
Kira
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Kira, most women move the ring to their ring finger after the ceremony. In Israel some women wear their wedding rings on the left hand, as in America, and some on the right, as in Europe. Until the LE I wore it on my left hand but now it's on my right.
So, first I was American. Then I moved to Israel and I was American-Israeli. Now I'm adding a touch of European?
Leah
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Leah thanks for this info. I have a really favorite ring that I always wore on my right hand. It's an antique signet ring made of rose gold. My left hand is now bigger so I've been wearing it on my left hand, which in America would be a wedding ring finger... I'm NLM so I guess I'll just keep everyone guessing as to my marital status.
This way I also can tell how swollen my LE arm/hand are by how tight the ring gets. 
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I would like to ask a question please? I have been reading your posts all along and have learned soooooooo much, but one thing.... when you say you have pain in your arm, could you please describe it?? Yesterday I had the sorest shoulder... I was almost in tears and had to take some pretty strong pain meds. I didn't wake up with this pain, and I was doing anything heavy duty, it was on the outside of my shoulder and moving around to my shoulder blade at the back. Today is much better with only the odd twinge this morning. Any ideas??, or is it just a stupid pain that goes with MX surgery and chemo.
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I can't answer that kelben. My arm seems to ache at the oddest times. Specifically where you say. On the outside of my shoulder around to my back. And also on the outside of my upper arm. I first thought it was nerve pain, but I'm thinking now it's LE pain. I try to keep it elevated and gently stretch it. Also, I do the massage and it seems to help. Sorry I can't be of better help!
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kelben - I don't know either but I am sorry that your shoulder hurts. It could just be stupid pain. I am glad it seems better.0
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kelben, sometimes it feels like someone must be twanging the nerves into my arm like they were guitar strings. Like a tight tight rubberband around the top of my arm so the rest feels like it is getting no blood flow. Sometimes it is a deep ache. I too deal with pain under my collerbone that radiates straight through to my back and pain up in my underarm like a stabbing knife.
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YES, that's it... like an icepick, it really hurt. Well I'm sorry you guys have sore arms too, but I feel a little better that mine isn't unusual.
Geez eh?? Every pain or ache is questioned. I do have a bit of lymph swelling every once in awhile and with holding my arm up for a bit and some light sweeps it seems to go down. I have learned so much in here, and I really appreciate it. ThanksKathy
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wanted to check in. don't post all the time, but i do read you guys.. am moving from reg.. LE excersizes to the pool for 5 weeks. the ms acted up with the excersizes she gave me, onward, and upward. all the gardening and the heat here in So, Fla is catching up to my LE. am gonna order the lymphedema bilateral sleeve tommorrow. ive been using one sleeve, and my gloves, its time to switch. we'llsee how i do. still wering a shaper for the truncal le; and its working out, just fine. the Le is under control, but only cause im vigalant. some pain from my hand, but with contractures from ms, neuropathy, and le; im not so bad... 3jays
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kelben, I get that. If I didn't have people here to talk to I'd be sure it was the cancer instead of a side effect of the cancer treatment
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question about therapy...
I've only been going to PT once a week because that's all they have time for. And when I went today she didn't even do the MLD. I took my mom so she could show her how to wrap my arm. She ended up doing that first when I told her I hadn't done the MLD yet this morning. So then, afterwards, she was like...oh you're arms wrapped...we're done. She even said she didn't need to see me back until I pointed out that my goals of therapy had not been reached. I initially went for axillary web syndrome which we hadn't got around to discussing b/c of the LE. So they agreed to see me back next week to help with range of motion issues...
Grrrr...I'm frustrated and feel like I'm not getting good care. My mom pointed out that I didn't even recieve any true therapy. I live in a rural area and already have to drive 45 min to PT. I'm thinking I need to call back the first woman I saw who is 1 1/2 hrs away. I'd be willing to drive further just for some better therapy.
Thoughts? Thanks!
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Wow, this is my first time on this thread.............you know when you think a thread does not apply to you, you kind of gravitate toward the ones that do........................well, here I am.......I asked the RO, the other day if she thought my arm looked a little larger then the non-surgical side, and she said ..........hmmmmm, maybe, why don't we send you to an LE specialist......
Well I went today, and was told the right arm is a little larger, not sure if it is still possible swelling from surgery (March 14th), but I am going to start treatment................
I thought it was because of the node removal (the dye did not work well on my nodes, so the BS took 8 to be sure), and she said..........that is not the case............She had breast surgery, had 25 nodes removed, and many were positive for cancer, and never got LE.......She said it depends on the individual and how you drain, not on the node removal.........
I am so aggravated, and upset with this, and after reading the threads of you ladies I'm even more concerned.....Sure doesn't sound like fun..............She also told me this is "life long" which made me even more happy GRRRRRR.............She can't treat me cause she is only covred by Medicare, and I have Aetna Gold, which doesn't cover her services, but she is sending me to someone who also specializes in LE, and we will go from there.........Not news I waned to hear,but it is what it is.................thanks for listening.
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Melanie_Ann, there is a position paper from the NLN on therapy: it's on this page
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
I agree with your sense that you're getting blown off here: you should be taught--and it takes several sessions--MLD, receive MLD, learn bandaging, and how can they see you once week if you're bandaged? It should be at least three times a week. And as you transition from the intensive phase---which ideally is three times a week--with their MLD, teaching you MLD, bandaging, then next you learn exercises, get fitted for compression garments and figure out what the plan for the maintenance phase will be, and as this is a chronic problem and your needs change, you need to come back for follow up evaluations.
She doesn't need to see you back????? Glad your mom was there as a witness. That's not okay.
Any way to let the referring doctor know she tried to discharge you before you even finished treatment?
Go with your gut here, you're right (and this is all too common.)
Kira
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Ducky, I didn't see your post: it's really good that you're being proactive and getting early treatment--the earlier the treatment, the better the response.
Yes, it is "life long" but it really varies between individuals just how much they need to treat it--some women on this thread only wear compression when they exercise. Others need to do more to keep it under control. And it will flare up when we're sick, or hot, or travel.
I'm kind of glad you're going to someone else: just because she didn't get LE with 25 nodes removed, the more nodes out, the greater the risk. And then, there are some of us--like me--who got it with just 3 nodes out. But I had some post op complications.
It's a steep learning curve, but we're here to help. And as Binney always writes, there's grief involved, because no one wants to have LE.
Let us know how the next therapist is. We have all sorts of resources we can recommend.
Kira
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I am freaking out. my hand looked ok this morning when I put on my garment. Around noon, the glove felt funny so I switched to a different glove. 90 minutes later I was still uncomfortable, I decided it was time to move to my Solaris. My hand did not look great when I took the day garment off, and it grew before my eyes over the next 5 minutes. My DH could even see the change. My hand is now bigger than it has ever been. This incredibly fast change is new for me. I didn't do anything weird today - it isn't hot, I'm hydrated, I haven't eaten anything salty. What the heck is going on? I'm afraid to put the glove and sleeve back on because right now they don't fit at all. What the heck am I supposed to do? MLD didn't do anything just now. I am fully hydrated with my arm up. I really wish I knew how to wrap. I've got a call out to the LE therapist I saw a year ago, but in the past, her first available was a month or more in the future. To make matters worse, I am supposed to fly this weekend.
Has anyone ever had something similar happen to them? What did you do? KS1
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Kira...(that is my grandaughter's name).................The reason I am going to someone else is this woman only takes patients with Medicare...........if I had Medicare, with supplemental insurance I'd be fine to see her.................I have Aetna Gold, which is not straight Medicare, so I need to go somewhere else..........Still with my Cancer Hospital Network, but in another location........I just would have preferred her...............I guess I'll find out soon enough
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KS--keep it elevated, any signs/symptoms of cellulitis?
Please pm Binney--I don't have email access to email her.
I don't know what's going on, but almost want to suggest an MD eval.
Kira
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no cellulitis. will pm binney
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KS--worse case scenarios, rule out a DVT. If you called an MD: they'd want a doppler--something to consider.
I pm'ed her also.
Kira
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KS1 - I feel for you!0
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Thanks so much Kira. It's just not sitting right with me. I just contaced the first therapist I saw and am waiting to hear back from her. Hopefully she'll be able to fit me in soon. I just couldn't imagine so little care with such a 'chronic' condition. I read the article about diagnosing and treatment and have had basically none of that. I'm glad I have a reference point here. Thanks for all the hard work on getting the word out.
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Melanie_Ann: isn't it horrible that we have to advocate so hard for ourselves with LE? But we do. Very good move to bring your mother with you. A 90 minute drive each way, that's dedication.
KS1--I'm really worried: I called Binney and she pm'ed you.
Kira
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KS1 - How is your hand doing?0
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KS1, how are you doing? I think Kira had a good suggestion with the doppler study
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I spent the afternoon and evening with my hand up and hydrated (as always). My hand didn't get any bigger, but it didn't get smaller either. I wore my tribute last night. The hand is smaller overall than it was last night. At this point, the swelling is confined to the ulnar (pinky) half of the dorsum of my hand and my hand looks wider (huh?). It is really odd looking -- my thumb and index finger look great, and with the exception of my pinky, my other fingers don't look more swollen than usual. Has anyone had this kind of distribution of LE?
I'm dropping by my old LE therapist's office this AM for a quick check that my garments fit. Have an appointment with my med onc for next week (praying this isn't a recurrence of BC), and a call out to my hematologist. To me, it doesn't look like a DVT (blood clot), but I am high risk for DVTs and I recently went off lovenox (a form of heparin). So, I went back on lovenox in case it is a DVT (and because I am scheduled to fly this weekend). As my internist said, the treatment for DVTs is heparin, so if it is a DVT, I am being treated. This is NOT the week for it -- a week packed with work and life things that are time-critical. KS1
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KS1--I know you're stressed, but please get the study to r/o the DVT--self treating with the lovenox makes sense, but I think you want to know what you're treating.
Working in rad onc: many of my patients turn out to have DVT's and I've discovered the classical presentation just doesn't happen: negative homan's signs, etc. We have a very low threshold to send for the test, and unfortunately it comes back positive all too often.
Did your internist support just treating with the lovenox and not testing? Should you delay the flight?
I know this stuff comes at the worst possible times: it's a law of nature
Kira
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