Lymphedema cured?

theartist · February 2010

At my last follow up visit visit to my rad onco, I was told that my lymphedema was gone! I was dx with it after chemo and mx before starting rads for 7 weeks. I was told it was "mild to moderate" in rt arm and hand, and did 6 weeks of PT. I did my self massage twice daily and was told to wear sleeve and gauntlet 24/7 (except when sleeping) "for the rest of my life". I am 46 and never fully believed this compression sleeve death sentence, and prayed for healing. After wearing the sleeve and handpiece faithfully for over a year, it seemed to me that my hand would swell more while I had it on, so I would take it off for a bit, and the swelling seemed to go down. I was also told to be careful of heavy lifting. But my personal trainer husband convinced me to start lifting light weights when exercising. I took the sleeve and gauntlet off for good in Oct '09. I continue to do the massage, but haven't had to put the sleeve back on yet, except occasionally when lifting weights. My doc measured me at last visit and said I was only 1 cm larger on affected arm, but that was pretty normal since it's my dominant hand. Any thoughts and feedback would be appreciated.

Thanks,

Karol

ElaineD · February 2010

Well done! I too had several years of lymphoedema-from top of my arm, to tips of my fingers. But persistence paid off, and my arm is now much recovered. I rarely need to wear the sleeves now-but when I recognise that swelling is happening (bizarrely, for me, in colder weather), then I wear them again. If you keep a close eye on it then you might be ok to do without for long periods. Can't remember the last time I needed mine!

kira66715 · February 2010

Karol and Elaine,

Your stories are both inspirational and reassuring.

Unfortunately, I personally don't think you can call lymphedema cured, but rather under excellent control--because I think the tendency to swell will still be there, but you've controlled it to the point it needs almost no management--rare compression wearing for Elaine, and some massage for Karol.

My LE therapist told me that her mother in law's LE "went away".

I work in rad onc and I seem to see three kinds of LE: that which goes untreated and gets worse, and that that gets early treatment and subsides to a point where it's not an issue. I think you're both in the latter group. There is a third group, those who are really compliant, but still have swelling--the most frustrating.

There is a researcher in the UK--AW Stanton--and he published a paper last year where he was able to use special imaging to look at the lymphatic systems of women with LE, and those with LE had some issues even in their good side.

I had found a great "patient perspective" in lymphology, about a woman who banged her hand in a car park almost a decade after her mastectomy and developed LE, and was distraught, but at the end of the essay, as long as she does MLD, her hand and arm are in excellent control.

We call LE incurable, but if it's negligible, isn't that control to the point of clinical insignificance?

I think you're both success stories, and you give me hope.

Kira

ElaineD · February 2010

I agree completely Kira-I would never class the condition as "cured". But it's such a relief to be able to dispense with the garments for long periods of time, when I never expected to be able to do so. As you said-it becomes a problem which verges on insignificant-and unless there is further trauma, then can be classed as well controlled.

HappyTrisha · February 2010

Karol, that is very interesting. An LE therapist I went to in the past (she believed in kinesio taping) told me that one of her patients swore by something called kettle bell weights and was able to get his LE under control by using those weights!

I've used low level laser therapy to get mine under control but the thing I am most heartened about is the fact that I haven't had to use my sleeve either. It's good to get to that place, isn't it?

Binney4 · February 2010

Karol, hello!

Both you and your (very!) personal trainer DH will be interested in both Kathrine Schmitz's study on weight training with lymphedema that was published this past August in the New England Journal of Medicine, and her clarification paper for the National Lymphedema Network. They're here:

The study:
http://www.lymphnet.org/pdfDocs/PAL_NEJM.pdf

The clarification statement:
http://www.lymphnet.org/pdfDocs/Weight_LE_Misconception.pdf

Both contain good information about how to reduce your risk of future problems when exercising with weights. The use of kettle bell weights carries the same risks as other weights and should be used by anyone at risk for lymphedema with the same sorts of precautions and supervision. You might want to see also the National Lymphedema Network Position Papers on Exercise, Air Travel, and Risk Reduction. You can find them in the right-hand column on this page:
http://www.lympnet.org

There's also an interesting discussion on another current thread here, "Taking a daily break from compression sleeves," about getting the lymphedema under control and then experimenting to determine how much garment use is actually necessary throughout the day, or day to day.

Hooray for such great results! May you never have another "swell" day!
Binney

Binney4 · February 2010

Oh, whoa! LOL! The only video I saw about kettlebell weights when I posted that was about using them like conventional weights. But I just watched the "real" videos about swinging them around your body from arm to arm -- NOT for those at risk of LE, obviously. So, yeah, with supervision by a trainer who understands LE and limits their use to safe exercises. No do-it-yourself kettlebell, for sure.

Be well!
Binney

HappyTrisha · February 2010

Binney interesting study having to do with exercise. I found it on the internet. It appears that an article that appeared in the NE Journal of Medicine showed that women who lifted weights had fewer lymphedema symptoms than those who didn't! Now you'd have to read the whole article to see what the exercises were. But I definitely agree with this statement in the article I am posting (this one refers to the NEJM study).

"In 2005, guidelines published by the National Lymphedema Network stated that strength training "poses the greatest risk to individuals with lymphedema." But now those guidelines are being challenged."

If they have changed their guidelines since then, that's great. I know you are a lot more on top of all of those things than I.

http://breastcancer.about.com/od/lifeaftertreatment/a/lymphedema-weight-lifting.htm

Here's a story about the guy who owns the kettlebell gym! Maybe this is that therapist was talking about!

http://sports.espn.go.com/espn/news/story?id=4714788

I certainly agree that people need to be schooled in the proper and best way to use these things. Actually I had never heard of kettlebells before that therapist mentioned them.

Lots of exciting possibilities out there.

Be well!

Trisha

moogie · February 2010

I recently went to one of my surgical oncologists to get a lump examined. He has not seen me in a few years, and did not do my last few surgeries. He thought my arm looked good, and from his perspective felt that committing to garments every day like brushing my teeth, would give me a good chance of having an arm that does not look much worse than it does today in years to come. Of course, untoward things can happen....and for some ladies the LE goes down a hard road despite best efforts. But he has seen a fair amount of LE, and I felt his comment said more about " accepting" the LE, and doing what you see works, and just committing to a program...whatever that might mean. I have tried going without a sleeve, and will say that even if my arm is not much bigger at the end of a day w/o compression...my armpit hurts like the dickens! Al in all, the compression offers a physical comfort even if it provides a fashion challenge!!!

kira66715 · March 2010

bump

ahdjdbcjdjdbkf · May 2013

So awesome to hear from my sisters in lymphedema healing. Today my hand was totally swollen and I had my sleeve on. I took my sleeve off and my hand was better in a couple of hours.

There is NO doubt that when I do my dumbbells and cardio that my lymphedema reduces. It also reduces when I have more time without a bra on.

I so wear the sleeve and gauntlet when I exercise but I don't wear it all the time every day and I have been keeping my arm difference to around one cm. When I was diagnosed I had a 2 cm difference.

Keeping my weight low is a major key. When my weight goes up my lymphedema doubles with putting on 5 lbs.

I think there is every reason to be hopeful about managing this for many of us.

ahdjdbcjdjdbkf · May 2013

Just had a super fun night feeling like a "Normal" person but even better. Now I have to so my lymphema self massage. Yep.

k_locklear59 · May 2013

I have Lymphedema in my trunk area. Anyone have that??? Very few doctors have seen it and I went to PT over and over without any results. I sometime look like I have a baby's butt sticking up right under my surgery breast. I have trouble doing exercises on my left side because it hurts like you know what to bend that way because of the fluid. If it is a rare side effect I have it. But I am still kicking and it has been almost 4 years.

hugz4u · May 2013

locklear. Truncal Lymphedema (LE) is very common and not rare. You can have LE in the breast/trunk/ arm/hand or all together on the quadrant of your surgery side.

To help with the pain, wear a Underarmour MENS compression Tee in a smaller size than you mormally wear. It will hold you in . (has to say compression on label) Your PTs and docs are not educated like most are not. It is up to us to learn how to manage this so we can not progress to a later more painful stage.

Please google stepup-speakout.org. You will learn everything you need to know about LE there. Some girls on the threads wrote the site and are experts. (thank goodness) You have come to the right place for help and you can ask us anything. No questions are silly here. Your answers you get will indeed improve your situation.

You need to get Manual Lymph drainage done to get the swelling down. Check that site out to find a qualified therapist in your area to help you. This is a must. You may notice truncal is better in the morn and gets worse later in the day. Check the rest of your quadrant in the morn and monitor your self for tingling, heaviness, pinching, soreness, any swelling etc.

Wearing a tight bra is a no no, Try going without one for a day and see if you feel better. Your bra may be trapping fluid and not allowing for drainage. You can try a tight cami instead but don't allow cutting under the arm. That web site I gave you talks also about bra choices.

You can order a Swell spot for your breast to help with swelling. See the recommended site I gave you.

Please do fire away you questions. Were are here for you.

Mariasnow. Doesn't a great night feel good!

Binney4 · May 2013

k, hello!

Here are the links Hugz was referring to:

Information on truncal (breast/chest) lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
There are links at the bottom of that page to help you find bras, camis, breastbinders, shirts, etc. to help with compression.

How to find a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hope that helps! Please stay in touch!
Binney

Lymphedema cured?

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