lymphadema!

[micheleu]

My lymphadema is getting worse! I'm almost 6 years out now. I'm trying PT and going to go learn some water excercies. My husband is also going to learn some tech. to help the swelling with massage.(i just hope he doesn't expect something in return everytime! Ha) Does anyone have any ideas on garments to wear to bed? The sleeve is useless. I need it more under my arm and top of arm. I'm looking for something that fits like a tank top and has a sleeve attached to it. Can't find anything like that out there. My arm is always tingly now

[Paty]

Dear Michele,

I am sorry to hear about your lymphadema. I really do not have any thing else to recomend but the pressure sleeve which seems not to work to good for you. I know the massages are the best that you can get for treatment. I am sure that some of our sisters here could recommed something like Caya for example. Hope somebody can suggest something good for you very soon. Keep us posted how do things develop.

Paty

[caya]

Hi Michele,

Just saw your post... sorry the lymphedema is so bad for you. My lymphedema is mild, mostly contained to my right hand, and both my breast surgeon and the therapist at the lymphedema clinic at the hospital I go to for treatment think it will be completely reversible.

That being said, I did get referred to an RMT (registered massage therapist) who specializes in lymphedema massage. Here in Ontario the therapist has to take about 140 extra hours of instruction/practicum to get the lymphedema certification. I'm sure you could find a lymphedema massage expert in your area - it is well worth the money, you may even have health coverage for it. Sofia, my masseuse, told me to bring my hubby next time to learn the massages.

I have an appointment tomorrow at the Lymphedema Clinic at PMH (Princess Margaret Hospital, in Toronto) for another assessment and massage. I will ask the therapist if she knows of any other garments to wear to bed like the one you are describing.

all the best
Caya

[Pam P]

Michele - I've had lymphedma for several years in my right arm following mastectomy. I've been able to control it well with lots of persistence. In the beginning I bandaged every night; now I don't do that unless I have a flair up. At night I have 2 garments I use alternatively - something called a tribute, and a different one that has velcro straps I can't think of the name of. I looked up on-line and found a site lymphedemaproducts.com. If you go to the custom garments tab it shows examples of each. I don't recomment the reidsleeve - it's very still and uncomfortable.

During the day I always where the sleeve and sometimes a gauntlet if my hand is puffy. The sleeve is always custom fit; the gauntlet I get off the shelf.

I go to a therapist who has had all the certification for lymphedema therapy - that's all she does. She says bandaging at night is the very best to get it under control. Also manual lymph drainage therapy has helped me - I try to go 2 times a month & my insurance pays for it. To get the garments I go to someone my therapist recommends who is trained to do proper measuring/fitting of the garments. My insurance also pays for them.

My therapist also said the under armour compression shirts can be helpful to wear. Not all of the underarmour things are compression, but it will say on the tag. Offers a little bit of support & you can buy them at most sporting wear stores.

Hope this helps.

[chrisy]

OK, this will probably be a really stupid idea! Maybe it should go on the keeping your mind off bc forum...

How about getting a wetsuit and cutting it to "fit" where you want it?

[ElaineM]

I think the water exercise is worth a try. When we do water exercises we get the benefit of the exercises without tiredness and aches and pains we can sometimes get from regular exercise. Let us know how it goes.

[caya]

Hi Michele,

I had lymphedema massage therapy today at PMH. The therapist gave me a few sheets of exercises to do, if you want to PM your address I would be happy to mail you a copy.

I asked her about the type of garment you described, she said a good custom fitter should be able to make you whatever you want, but she does not advise sleeping in it. She also recommended swimming as excellent for lymphedema management - the breast stroke and back stroke especially because the arms move so broadly so that the lymph system gets a good work out.

all the best
Caya

[chicagoetc]

I don't know if this will help or not...I did not have Lymphedema (don't yet I think) but I did have painful "cording" down my arm. I was sent to a lymphedema massage therapist as they also address cording (webbing) and loss of range of motion. One of the things they did do was to teach me how to do my own massage...said I should do it indefinitely. Maybe this is something you already do. If not it might be an idea. I notice that small cuts and insect bites on my one arm take longer to heal (by days) than on the other. The massage seems to help the healing process. Whether it would help with swelling is something I do not know (though I suspect it could).

Melanie

PS: The whole idea of things getting worse six years down the road is sobering to me. Probably in a good way. I hope the water exercises help.

[micheleu]

I never thought about the underarmour. That is a very good idea!! thanks for all your help.

[Midwest Alice]

Hey Michele,
Sorry to hear your lymphedema is getting out of hand. I got mine about 6 months after dx.

When I was at MDAnderson this week a Bc survivor volunteer told me a story of a women who had bad lymphedema that had surgery and it was fixed. She said there is one Dr. there who does this surgery. The Dr. is a woman but she couldn’t remember her name.

My PT told me about Underarmer too.

Have a great Saturdary.

[Soccermom]

The Doctor that Alice is referring to is Dr Marga Massey,MD,FACS.( She is double board certified in plastics and general surgery)
"Dr Massey has been interested in lymphadema for 15 years.During her residency at Duke a senior cardiac surgeon assigned her the topic. With the initial study of the historic "Charles Procedure" and lymphovenous bypass,a plastic surgeon was born."
Vascularized Lymph Node Transfer (VLNTx) is a novel approach where normal lymphatic tissue us transferred from one area of the body to another.
Dr Marga has trained in Paris under the mentorship of Dr Corrine Becker which has resulted in a collaboration extending to the US Brazil and Egypt.
Dr Massey recently joined forces with the Center for Restorative Breast Surgery (Drs DellaCroce and Sullivan) in New Orleans (which thrills me no end!).. What a step up for us BC survivors to have a facility of this calibre available to us!

http://www.drmarga.com/stats.html

Marcia

[Debbie L.]

Hi Michele,

Sorry to hear you're dealing with this. I hope that the PT that you refer to is a certified lymphedema therapist. Lymphedema is one of those conditions that really requires someone who knows what they're doing, or more harm than good can happen. Water exercise is fine but it's not enough.

I'm suspicious that you are not seeing a certified therapist, because if you were, you would not have to be asking us about garments - the therapist would be treating your lymphedema with massage, skin care, exercise, and compression and would be talking about ordering custom garments if those are needed (when the swelling is under control).

Your regular doc, your oncologist, or your surgeon should be able to refer you to a certified lymphedema therapist (they are often also PT's, in this country). Sometimes you'll have to travel a ways, if you live in a remote area, alas. But it will be worth it to get off to the right start in managing this condition.

You'll learn how to manage it yourself eventually (self-care) and you'll also learn what particular things set off your particular arm and also what particular things work best to make it behave. It's a pain in the neck, but a very-manageable one, once you get the right provider.

Keep us posted, okay?

Debbie Laxague

[micheleu]

The lymph node transfer is very interesting. I emailed Dr. Massey some questions. we'll see if she responds

[yankeebikachic]

I got mild swelling and pain/tingling overdoing some house construction and my chiropractor resolved it in 2 visits. Maybe you could explore that option.

[Westcoastgirl]

This was the website I went to to make sure I was going to a certified practitioner http://www.vodderschool.com/
On the website you can find a qualified therapist in your area. I found a wonderful woman and she knew everything I needed to know and had references to all the places in town for fitting garments. If you are interested in a book that outlines the physical massage you can do at home e-mail me and I will dig it out for you.

[Marilyn]

I used a tribute sleeve by Solaris for several years and it worked wonderfully. It was prescribed by my lymphedema therapist and she did the measurements. It is a made-measure-garment. I wore a garment at night and also a garment during the day and can say that my lymphadema is now under control and I don't need to wear anything. I continue to get monthly massages from a massage therpist that I believe help me out as well.

Good luck to you!

[dchips1]

http://www.bio-con.com/lymphedema.html

These guys make awesome custom made sleeves, good quality and very durable. I have used them since 2007 and they wear well and are comfortable. If I swell really bad then go back to wrapping at night. I also found at that after weekly herceptin since 3/06, my cardiologist put me on low dose of diovan and hctz which helped dramatically as well.

Goodluck

Darita

[Soccermom]

http://www.breastcenter.com/news/20090803_wwl.php

Michelle, I thought you might want to see this segment from WWL-TV in New Orleans on the VLNT procedure...
Marcia

[Sandra in GA]

I am so happy to learn about this procedure. I almost did not have the recommended radiation treatments even though I had 21 of 21 lymph nodes removed from my left arm test positive. My left arm is my "good" arm that performs all of my daily living tasks due to the fact that as a small child I had Polio that caused me to have very limited use of my right arm. I cannot lift anything, feed myself, write, etc. with my right arm. When the radiation oncologist told me that there would be a 30% increase in the chance of the lymphadema occurring, I almost bolted and ran for the hills. I did go ahead since I had so many positive lymph nodes and completed 5 weeks therapy in April this year. So far I have had only very mild swelling problems and I do have a compression sleeve, gauntlet and the therapist has taught my husband to do the massages. Knowing there is this procedure in case it progresses and causes problem using my only operative arm brings me much relief!!!

Sandra
_________________________________________
Diagonosed: August 2008 ERPR- HER2+ (3+), 3 cm tumor Stage III with lymphatic and vascular invasion, 21/21 nodes positive. No spread to other areas of the body
Surgery: Double mastectomy R-Prophylactic with reconstruction of R brst begun; 21 lymph nodes removed from left arm
Chemo: A/C began in Sept. 2008 every other week X's 4
Nov. 2009 began Tykerb daily along with Taxol and Herceptin given weekly for 12 weeks (this stretched to 14 weeks because of low WBC and temp on two occasions).
Now taking Herceptin once every 3 weeks and daily oral Tykerb until middle of Nov.

In a phase II study of the cardiac safety and tolerability of Herceptin and Tykerb added to adjuvant chemotherapy at Mayo Clinic in Jacksonville, FL for early stage treatment.

[suzan w]

oh my, this is awful! after 6 years...I still have large ares of numbness and some puffy skin flaps left over from surgery and I wonder about them. And no one seems to get it that if one has had both breasts removed, and some lypmh nodes on both sides that blood pressure cuffs should not be used. And I am usually such a weenie that I let them do it anyway. Well, Michele, you have inspired me to say "NO" to more blood pressures!!! It is the least I can do!!! Good luck to you!!! Hey, do you think the altitude where you live has any bearing on any of this???

[naturaleigh]

Micheleu,

There is a moon shaped, styrafoam filled pillow that fits under your arm. I was told to wear it at night, but with a bra on, you get more pressur. Since I don't wear a bra at night, I try to wear it some at night while relaxing.

I would think something would be pretty easy to make. Something circular with stryafoam chips in it that will fit in your bra under your arm.

It really is amazing how well it works. I find this works better than the garments I was told to wear.

There is also something call a reed sleeve that is like a big sleeping bag you wear at night. This does not help ME as much, but everyone is different.

[yankeebikachic]

can you sleep with your arm elevated?
I sleep with my arm elevated over my head, on my pillow. Helps keep my arm from getting 'frozen' and immobile.

[Sandra in GA]

Naturaleigh,
Could you please tell me the name of that pillow or the maker?
Thanks,
Sandra

[Soccermom]

http://www.noblemed.com/optishape.htm

FYI,This company also will send you a FREE lymphadema alert bracelet (which I have utilized many times) just click on the link on the left side of the screen

[fauxgypsy]

My husband went with me to a LANA certified therapist and learned to do the massage. I had some trouble with my arm but my side and back were involved as well. For me, it has to be done on an almost daily basis. If I wear the sleeve my hand swells. I also bought a couple of stretchy camisoles and I wear them for a while if it appears to be getting worse. So far it is staying under control. Best of luck. Leslie

[chicagoetc]

This probably doesn't apply to most of you, but the New York Times today published an article that applies to Lymphodema in general. It runs counter to what many of us are told (but wisely suggests that anything like this be done under the care of a doctor). Also if you look up the reference to the study in www.uphs.upenn.edu/news indicates that personal trainers, constant monitoring, and compression sleeves were used.

Melanie

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Weight Lifting May Help to Avert Lymph Problem
By TARA PARKER-POPE

Published: August 17, 2009

After a woman has surgery for breast cancer, she is typically given a long list of don’ts. Don’t lift anything heavier than 15 pounds, including your child. Don’t carry a heavy purse or grocery bags. Don’t scrub, push, pull or hammer.

The goal is to prevent lymphedema, a painful and unsightly swelling of an arm or leg that can occur near the site where lymph nodes have been removed or damaged by radiation. But new research suggests that much of that advice may be too restrictive. To prevent lymphedema after breast cancer, the best strategy may be more exercise, not less.

Last week, The New England Journal of Medicine reported on a study of 141 breast cancer patients who had lymphedema. Half adhered to the traditional restrictions, while the other half embarked on a slow, progressive program of weight lifting. To the researchers’ surprise, the weight lifters actually had significantly fewer flare-ups than the women who restricted their activity.

“Lymphedema is a very feared complication, and many women have made major alterations to their lifestyle in an effort to avoid it,” said Dr. Monica Morrow, chief of breast surgery at Memorial Sloan-Kettering Cancer Center in Manhattan.

“This is a very welcome study that very clearly shows controlled weight lifting does not make it worse and, in fact, improves symptoms. That should be a reason to re-evaluate a whole lot of things we tell people about lymphedema.”

The findings don’t mean that patients should disregard everything their doctors tell them about lymphedema, which can also occur with other cancers. Once lymph nodes have been damaged or removed, the lymphatic system is less able to cope with trauma or infection, and the painful swelling, tightness and heaviness of lymphedema can result. While physical therapy can ease the symptoms, some patients never fully recover.

Doctors say some of the standard guidelines are reasonable. Intravenous lines, for example, pose a risk of infection, and they should not be used on an arm affected by lymphedema. But other restrictions, like not carrying children or using a blood pressure cuff on the affected arm, may be too extreme.

An editorial accompanying the weight-lifting study in The New England Journal notes that the current “policy of avoidance” should be replaced by recommendations for rehabilitation, particularly because many women have to ignore the restrictions anyway — they are caring for young children, or their jobs require manual labor.

“Rather than saying, ‘Don’t ever lift more than 15 pounds, don’t carry a suitcase,’ instead we should empower women,” said Wendy Demark-Wahnefried, a professor of behavioral science at the University of Texas M. D. Anderson Cancer Center, who wrote the editorial. “Give them the rehab and the exercise training they need after their treatment.”

Kathryn H. Schmitz, an associate professor at the University of Pennsylvania School of Medicine and the study’s lead author, notes that in the past, patients were wrongly advised to avoid activity after a heart attack or a back injury.

“It’s the same principle as back rehab and cardiac rehab,” she said. “You’re slowly and progressively increasing the stress that your system can handle. We’re applying that to lymphedema.”

Corrie Roberts of Philadelphia developed lymphedema in her left arm in June 2004, about 18 months after a mastectomy. She had taken the usual precautions, but during back surgery the anesthesiologist mistakenly used her left arm to insert the intravenous line.

After taking part in the weight-lifting study, she said the swelling and discomfort were finally under control. She uses an exercise room in her apartment building and lifts weights three to five days a week.

“It sure was an improvement,” said Ms. Roberts, 75. “As long as I keep the weight lifting up, I don’t have swelling in my arm.”

Dr. Schmitz is conducting a separate study to determine whether weight lifting can prevent symptoms in women who have never had lymphedema. Another study will focus on exercise programs for people with lower-limb lymphedema.

Experts warn that women should not embark on an exercise program on their own, but should ask their doctor about finding a rehabilitation center or exercise program for patients at risk for lymphedema. The women in the study began with very light weights and were regularly monitored for swelling or pain. Dr. Schmitz noted that not every woman is a candidate, and that a few women in the study developed swelling almost immediately after exerting the arm.

Centers that offer the weight-lifting program used in the New England Journal study can be found at www.uphs.upenn.edu/news. Patients can look for a personal trainer who has a cancer exercise certification from the American College of Sports Medicine. In addition, many Y’s now have exercise programs for cancer patients through a partnership with the Lance Armstrong Foundation.

Women can also order the DVD “Strength and Courage: Exercises for Breast Cancer Survivors,” which was developed by Dr. Sharon Cowden, a Pittsburgh pediatrician and golfer who had breast cancer, and Janette Poppenberg, a health fitness specialist certified by the American College of Sports Medicine.

[Jackie07]

Just received this link from 'Lymphedema People':

http://www.lymphedemapeople.com

[Jackie07]

Another link about lymphedema in my mailbox today:

http://www.lighthouselymphedema.org/