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Topic: Help! Mummy on the loose!

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 16, 2006 10:45AM

PJB wrote:

Well, I got my arm wrapped for the first time today (so pardon the typing). Got a sleeve to wear over the weekend and will go back to the PT on Tuesday. The massage seems pretty simple but I'm afraid I'll do it out of order or backward or something and make things worse.

If I have mild LE, is there any chance I'll be able to drop the sleeve sometimes? It's 100 degrees here about 5 months a year... I'm not looking forward to it.

Thanks,
Paula

Update - Everyone at work thought I'd broken my arm, I had so much bandaging. Can you really learn to wrap it yourself at home?
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Jun 16, 2006 05:47PM Binney4 wrote:

Hi, Paula,
Hot, yes -- I hear you on that! So, what did you tell your co-workers about your arm? Did their eyes glaze over at your explanation? So far I haven't found anybody who considers this a fascinating subject!

Everybody's LE is different (and it can be different at different times, too), so there's no way to predict how much you'll need to wear your sleeve and glove. Andy wore hers faithfully for 18 months following treatment, exercised regularly, and then found she could go without them for limited periods (but not when she's flying or working hard, etc.--did I get that right, andy?) I've found lately I can remove my gloves and sleeves for a couple of hours in the evening if I'm just sitting watching TV or talking, but still have to wear my vest because my chest starts to swell in only 15 or 20 minutes. NPat always wears her sleeve but doesn't use her glove at work (she's an NP and needs to wash her hands all day long). So I guess the answer to your question is, yes, there's a chance, but it's going to take awhile to figure it all out.

Steep learning curve, isn't it? We used to have a thread here where there were confessions of bandage flinging, weeping, raging, and gnashing of teeth. Hmmm! Can't imagine who'd do a thing like that! Well, okay, but I finally learned how to do it, and I finally got the massage straight too (for the most part!), and I just want to encourage you that those two things are the best weapons you've got against this thing, and it's GREAT when you finally know how to do them both. So ask your therapist a gazillion questions and get all the help and answers you can.

It'll be GOOD!
Binney
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Jun 17, 2006 07:00AM andys wrote:

Hi Paula,
Yes, I well remember the fat-fingered typing I did when I had to wear those bulky bandages 23 hours a day. You will learn to wrap yourself - I can now do it in the waiting lounge in an airport. But, there might be a bit of frustration at first. My husband heard bad words he didn't even think I knew. Patient fellow that he is, he would reroll the bandages after I flung them across the room. When your PT is going to teach you to wrap, take a friend and a video camera. It's nice to have something to review when you are trying to do it yourself. A tip - have the videographer stand behind you, so you get the perspective you will have when you are bandaging yourself. My husband videoed standing behind the PT, and I had to reverse all the left/right stuff.

If you have mild lymphedema, there is hope that you will be able to go without the sleeve/glove and bandaging routine some of the time. For me, it took about 18 months of faithful compliance. Then, I began to experiment. At first, I would feel my arm swelling after a very brief time. But now, I go days at a time without my lovely fashion statement. For me, it happened in stages. I was discharged from therapy when the swelling was down by 50%. Then, I didn't make any forward progress, and in fact, regressed and had to go back to the therapist a few months later (we think it was because I seriously bruised my arm doing something un-coordinated). Got the swelling down to the 50% mark again, was discharged again, and figured this was my new normal. That summer, I started swimming every day, and the swelling went down to the point where my hand and arm looked normal. But, everytime I tried to go without sleeve/glove or skip bandaging even one night, I felt the difference. Continued with walking and yoga for exercise during the winter, and discovered, finally, during the spring, that I could actually go out for an evening without the sleeve and feel ok. Now, as I said above, I go for days without bandaging - I do wear the sleeve and glove whenever I walk/treadmill/yoga, and any other time I'm doing anything deemed "risky", I bandage whenever I fly (about once every two weeks for work), and I make sure I bandage about once a week otherwise. Until about six months ago, I did the full massage routine every morning. Now, some days I just do trunk massage (neck, underarm, groin, chest) skipping the full arm stuff. To look at me, you wouldn't know I had lymphedema, but last week I participated in a clinical trial of a new measuring device, and they definitely saw a difference in my two arms.

As to the comments you'll get about bandaging and the sleeve. Whenever I fly, my seatmate always asks how I broke my arm. Many folks think the sleeve/glove is due to burns. Others ask me if it's because of carpal tunnel (I'm in a high tech profession). Sometimes I explain about lymphedema, sometimes I just say I have a chronic condition, sometimes I just grin and say "you should see the other guy". I know I should always try to educate folks, but often I just don't want to go into it. Oh, and if you get a really horrified reaction when you tell someone it's because of lymphedema, they may think that you have lymphoma. I know my neighbors had that rumor going around for a while.

Well, that's the story of my life with lymphedema. Sorry I was so long-winded. Good luck with your progress in therapy and in treating this monster.
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Jun 17, 2006 10:56AM NancyM wrote:

I'm glad to hear there are others who have been weeping and gnashing their teeth...I was afraid I just wasn't handling this whole thing well.

And good to know that I'm not the only one trying to remember the massage sequence!! (That's an excellent idea to bring the video camera, even for the massage part). But as far as asking all the questions - my therapist HATES that. Maybe time for a new therapist if she resents her clients wanting to know what's going on!!
Dx 5/11/2005, IDC, Left, 2cm, Stage IIB, Grade 3, 2/21 nodes, ER-/PR-, HER2- Surgery 5/19/2005 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 6/14/2005 AC + T (Taxol) Radiation Therapy Whole-breast: Breast
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Jun 18, 2006 06:27AM PJB wrote:

I agree you have to have a good therapist. Mine was very helpful and doesn't seem like she minds questions at all. The video is a great idea. Now, I guess I'd better be a good girl and put the sleeve on. I have to say, my son likes to help me put it on with that cool little thing with the handle that makes it so easy to put on. (clearly, i don't have the lingo down yet)

Thanks all for the great advice and giving me hope that I won't be wrapped up like a mummy (hopefully) ALL the time. Now, if i can just get that massage thing down right, I'll be pretty set. Did wear the sleeve about 8 hours yesterday, and really it's no big deal. And I can see some improvement.

Oh, and as for comments, it took me one time of explaining the whole thing to give it up. I switched to something like "it's not broken, it's just aftermath of surgery" kind of thing.

Paula
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Jun 18, 2006 08:27AM ShirleyHughes wrote:

I'll be seeing a new therapist this coming week. I'm rather anxious in seeing the difference between the therapists. My old one released me although I just wasn't satisfied. She never taught me how to massage, wrap or anything. She didn't think I needed wrapping and I so hope she is right.

I have mild LE, but she said it's also truncal LE. Oh, geez, I hope I don't have to wear the sleeve ALL the time. I really wanted it for flying and doing housework that required pushing and pulling or window washing...none of which I do much lately. LOL When I shampoo the carpet I rotate both arms...the darn thing is heavy.

And, thank you Binney for all your help. You are the best. And, Andy, thanks for explaining all that you've been through.
Shirley
God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference
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Jun 20, 2006 05:28AM inspiewriter wrote:

I am getting wrapped for the first time tonight!! What I have is mild but she still wants to wrap me 24/7 for 2 weeks, then get a sleeve for partial days.

I do have a good friend who is completely lymphadema-free after her 5 year anniversary. So there is hope.

Plus, she's 57 years old and just lost 20 pounds!!!
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Jun 20, 2006 06:47AM inspiewriter wrote:

Okay you guys have me worried--just how hard is it to learn to bandage your own arm????


Robin, freaking slightly
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Jun 20, 2006 07:57AM PJB wrote:

Robin, good luck on that wrapping. My therapist is having me go with a sleeve for now, along with the massage. Which I found out I was doing too vigorously and probably not helping one bit. I'm sure with practice, you'll be a great bandager. Just think, a new skill! (One that's a drag you have to learn)

Take it easy,
Paula
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Jun 20, 2006 09:53AM inspiewriter wrote:

Quote:
Robin, good luck on that wrapping. My therapist is having me go with a sleeve for now, along with the massage. Which I found out I was doing too vigorously and probably not helping one bit. I'm sure with practice, you'll be a great bandager. Just think, a new skill! (One that's a drag you have to learn)

Take it easy,
Paula



Thanks Paula. Mine thinks the bandaging now will make the eventual sleeve be the perfect size. (((HUGS)))
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Jun 20, 2006 10:53AM jinky wrote:

Oh Inspiewriter, Tell me more about your friend with the 5 yr miracle. Does she have LE in her arm and hand? Did she ever wrap and wear garments.It would be a blessing to have some down time.LE hugs jinky

age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Jun 20, 2006 01:21PM NancyM wrote:

No mummification for me for a week - I have a lymph infection in the arm, and I have 160% more volume than when we started! The onc put me on 2 antibiotics!

It's one thing to not see any improvement, but I'm going backwards!
Dx 5/11/2005, IDC, Left, 2cm, Stage IIB, Grade 3, 2/21 nodes, ER-/PR-, HER2- Surgery 5/19/2005 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 6/14/2005 AC + T (Taxol) Radiation Therapy Whole-breast: Breast
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Jun 20, 2006 01:58PM azdarleen wrote:

Hi there NancyM, hang in there with your infection, I'm just getting over mine, it was a week yesterday, I know how madding it is, this was my second infection in about 2 1/2 months. I too feel like I'm going backwards. I am doing better, and feel a lot better than I did last week.
Hang in there.
LE Hugs
Darleen
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Jun 21, 2006 05:16AM inspiewriter wrote:

Quote:
Oh Inspiewriter, Tell me more about your friend with the 5 yr miracle. Does she have LE in her arm and hand? Did she ever wrap and wear garments.It would be a blessing to have some down time.LE hugs jinky



She did the bandaging but don't know about the sleeve. Her hand and arm were very thin when i saw her--much room for hope for us!!

gOT MY bandages on and can barely type--aarrggh. therapist said 2 weeks max--maybe 1 1/2 weeks.

what a birthday present LOL

Nancy ((HUGS)))) hang in there!!
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Jun 21, 2006 05:17AM inspiewriter wrote:

hey how did you guys know you had an infection in your arm??

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Jun 21, 2006 05:31AM Sam91 wrote:

I have a question for all you ladies that are experiencing lymphodema. I had a mast in April and SNB. I am of course numb around these two sites. I did my exercises religiously and am now taking tamoxifin. In the past two days I have had a throbbing pain in my arm around the elbow and up towards the shoulder. Could this be a symptom of lymphodema or perhaps a side effect of tamox.

I am an avid golfer, played a little last week. Maybe I shouldn't have. Any help would be appreciated. I keep checking to see if the right arm is larger than the other. I haven't messured but it looks slightly larger - could all be in my head, thinking the worse.
Sam Dx 3/23/2006, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jun 21, 2006 05:51AM Binney4 wrote:

Birthday blessings, Robin! Sorry about the accessorized arm, but hopefully you can celebrate big today, and then when you're bandage-free in a couple weeks you can celebrate again -- two for one! In the meantime, typing is...uh, interesting, yes? Hope you don't find yourself in an inspired, creative flurry just now -- hold off on that for a week or two!

Symptoms of infection with LE are as varied and individual as the rest of this, but can include redness, rash, splotchness, unexplained swelling that doesn't respond to your usual efforts, itching, pain or achiness, warmth to the touch, and low-grade fever. Hope Darleen and Nancy will be along to tell us more specifically. Good news: spontaneous LE infection is much rarer in post-bc women who have completed MLD therapy than in the rest of the LE population. So most infections can be traced to some insult to the arm, like a burn or cut (or stupid hangnail), and can be caught quickly with topical antibiotic, or if it's already showing signs, with a quick start on oral antibiotics. Many of us keep a supply on hand, others keep just the prescription on hand.

Sorry, got carried away again -- the whole point here was to wish you a HAPPY, SNAPPY BIRTHDAY!!! And lots more thoroughly healthy ones to come!

Celebrate anyway!
Binney
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Jun 21, 2006 06:17AM Binney4 wrote:

Nancy, I am so sorry. I hope you're not in too much pain, and I'm really glad to hear you're started on antibiotics (and I hope your stomach's not objecting to taking them two at a time!) Darleen found it helpful to keep her arm elevated, and she mostly rested. Please keep us posted as you're able.

It is so discouraging when things go backwards with this, but please be reassured that this won't last long and you'll soon be back on track. Whenever my arm or chest "acts up" I can't help thinking it's a permanent thing, and I'm always amazed all over again when it finally responds to treatment again. It's just that you'll have to wait a bit now before you can get back to actively treating it. Excessive swelling is "normal" with infection -- all that lymph fluid hurrying to the site to help out and all it accomplishes is the granddaddy of all traffic jams! But once it's under control you'll be ready to get that arm back into shape. Hopefully kimmy will come along soon -- she's our infection specialist (aaugh!--very rotten thing to know a lot about!)

Rest, do whatever helps keep your spirits up, and know we're all here cheering on the sidelines.

((((Hugs))) and prayers,
Binney
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Jun 21, 2006 06:31AM Binney4 wrote:

Good morning, Sam, and welcome! Sorry you've got these bummer questions that brought you here, though. What you're describing could be lymphedema (LE), but whether it is or not, a visit with a well-qualified LE therapist would be a great idea. She'd take measurements in their crazy way and she'd be able to tell you just what's up with that. Better still, she'd be able to help you with prevention precautions that would apply directly to your golfing passion. In general, after bc treatment we need to go very slowly in returning to activities that stress our arms, stop immediately if the arm feels even a bit tired, and stay aware of symptoms of aching, heaviness, or swelling. Lots of doctors don't know much about LE and have trouble recognizing it, so you may have to insist on prompt help with this. But getting it definitively measured and diagnosed is the best way to keep it from progressing.

Let us know what you discover.

Be well,
Binney
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Jun 21, 2006 06:57AM Sam91 wrote:

Binney, thank you so much for responding. Think I will give it a rest for a few days and go from there. Where would I find a LE therapist if this persists? I didn't think I would have to worry about this as I only had one node removed, but I guess you never know.

I have read that swimming is good - we have a pool but haven't been to interested in getting in after loosing a breast from this beast!!
Sam Dx 3/23/2006, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jun 21, 2006 08:21AM jinky wrote:

Thought you may want to see this. LE hugs jinky

http://www.sperience.org/bcjarchive/michelinkaren.html
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Jun 21, 2006 08:48AM sccruiser wrote:

Hi Sam,
Wanted to comment on the swimming--i love it. i spend about an hour in the water 3-4 times a week. wish i could do it every day! Went to a lymphedema therapist who specializes in aquatic therapy. We developed an exercise program together. Insurance paid for the sessions, and most likely will pay for all or most of what i need to do the exercises. i'm lucky, i work at a comm. college so swim for little $$.

Good luck sam with getting an assessment. Even if you don't have it, my therapist says baseline measurements are very important.

just wondering how many of you out there had to convince your dr or surgeon you had lymphedema? i have fought to get what i need to return to my "old life," as much as i can.
would like to hear your stories. maybe i should start a new thread?
(((())))
take care,
grace
One must still have chaos in oneself to give birth to a dancing star
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Jun 21, 2006 09:48AM jinky wrote:

Nancy and Darlene, I am praying for you both to get over this infection.Take care LE hugs jinky

age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Jun 21, 2006 09:55AM NancyM wrote:

Robin - HAPPY BIRTHDAY!!

Thanks to everyone for their nice wishes in regards to my arm! Yes, I was worried about my stomach, but it's the intestines that don't appreciate the antibiotic bombardment. Time for acidophilus tablets, I guess!

And Binney, your description of symptoms is great! I think all bc patients should memorize them! And I love the description of the lymph traffic jam!!

I was so happy this morning - the swelling in my hand is almost gone, just 36 or so hours after I stared the medications. Too bad meds can't make all of the swelling go down.

Jinky, thanks so much for the link (and the prayers) - I'm going to print the photos and bring them with me when my LE therapist *finally* shows me how to do the wrapping myself. Then I can make notes right on the photos.
Dx 5/11/2005, IDC, Left, 2cm, Stage IIB, Grade 3, 2/21 nodes, ER-/PR-, HER2- Surgery 5/19/2005 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 6/14/2005 AC + T (Taxol) Radiation Therapy Whole-breast: Breast
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Jun 21, 2006 10:56AM Binney4 wrote:

Wecome, Grace! If you start a new thread you'll get plenty of stories. Of all the women who've talked about it here, I think I only remember a couple (Amryann is one) who got a prompt diagnosis and referral from their doctor. Do try a new thread -- this one's getting complicated! I too find the water great for the LE, and very easy on all the joints and muscles affected by Arimidex too. My swimming solution is a neighbor's pool -- they go away for the summer and we take care of it in exchange for use of it. Lots easier than owning our own, and private for those days when I'm not feeling especially "presentable".

Sam, good question! You want a therapist with at least 135 hours of specifically LE training past her OT or PT training, and at least a year of supervised experience in LE therapy. Those are the standards that are currently accepted by the National Lymphedema Network and the LE certifying organization (Lymphology Association of North America - LANA). Several states are working on legislation to mandate those standards, but since they're not yet required it can be hard to find well-qualified therapists. Here's a site with links to lists of them by geographical area:
www.mylymphedema.com
Do keep us posted.
Binney
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Jun 22, 2006 06:44AM inspiewriter wrote:

Quote:
Wecome, Grace! If you start a new thread you'll get plenty of stories. Of all the women who've talked about it here, I think I only remember a couple (Amryann is one) who got a prompt diagnosis and referral from their doctor. Binney



First, thanks for all the birthdsy wishes and personal replies!

When I called my surgeon's office asking for a referral to a lymphadema therapist, they acted like they had no idea what I meant and asked me to explain better.

Instead I went over to my primary care doc, held up my hand and said, I need to go to a L. therapist.

And she said, "yes, you do."

She couldn't tell me of one though, had to go on the 'net and find one myself.
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Jun 22, 2006 06:46AM inspiewriter wrote:

Quote:
Thought you may want to see this. LE hugs jinky

http://www.sperience.org/bcjarchive/michelinkaren.html



Thanks!
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Jun 22, 2006 07:04AM azdarleen wrote:

Hi Robin, Binney was great about the signs of infection, the main thing is as soon as you see the redness see a Doc, My first round with the infection , I waited three days, didn't think it was a big deal, well as soon as I went to Doc, they put me into hospital for four days, that was not fun, this last round of infection I started the antibiotics the same day my arm started getting red and I didn't have to go to hospital.I'm doing pretty good now, just working on getting the arm and hand back down again.
Talk care LE Hugs
Darleen
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Jun 23, 2006 05:47AM inspiewriter wrote:

Glad you got it taken care of, Darleen!

Right now my arm is wrapped up mummy-style--I feel like I should be chasing scooby Doo and the gang around an old mansion. LOL
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Jun 23, 2006 06:05AM PJB wrote:

Robin, Rat's Runny! (In Scooby talk, That's Funny)

Stay cool,

Paula
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Jun 24, 2006 07:32AM inspiewriter wrote:

Quote:
Robin, Rat's Runny! (In Scooby talk, That's Funny)

Stay cool,

Paula



Thanks for the chuckle.

(sanks shor sha shuckle)

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