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Topic: My lymphedema has...gone?

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

Posted on: Sep 21, 2015 11:10AM

Musicgal wrote:

I developed lymphedema in my right arm, six months after surgery (all lymph nodes removed), and very soon after flying. This was nine years ago.

I have kept up a complete regimen of arm compression sleeve during day (all day)and power sleeve at night, together with lymphedema massage demonstrated by my lymphedema specialist at Greenville Memorial Hospital (SC).

I also swim almost every day during the warm weather, if only to move my lymphedema arm through the water.

Over the years, the swelling from physical activity ( especially lifting, vacuuming and hiking) has lessened in small increments.

I was told this condition would be with me for life, and I am very used to the regimen and comfortable with it.

During this past year, my sleeves got a bit older and I was tardy in getting new ones. My power sleeve is also aging...so I started to go without. These past two months, I have had no swelling or other symptoms of lymphedema in my arm. I am monitoring carefully, but it is just not there. My arms are the same size, and if I press on the underside, I do not get an indentation.

I do not know if this will continue, but I wonder (so little is known or studied about lymphedema), that after all these years of following a strict regimen, that my lymphedema is gone. Stay posted!!

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Sep 21, 2015 02:39PM Moderators wrote:

Musicgal-

Welcome! And thank you for sharing your story with us, that is wonderful news! We'll keep our fingers crossed that it's gone for good, please keep us posted!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 22, 2015 02:48AM Binney4 wrote:

Musicgal, hello and welcome!

Your screen name is awesome--are you a musician? Those who are can be especially impacted by lymphedema, since it can affect their ability to play and perform. It does sound like you've had that all under great control, though, so brava!

It's encouraging to hear about improvement with this lousy condition. Celebration is definitely in order--chocolate all around! Wishing you no further signs of this nasty business, ever.

The underlying cause of the lymphedema has obviously not disappeared, so a bit of caution may still be called for--things like wearing compression for trigger activities, staying active and well hydrated, and doing some deep breathing throughout the day. Looking forward with you to continued swelling-free progress!

Hugs,
Binney

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Sep 24, 2015 08:05AM Musical wrote:

Musicgal, great screenname and a great story of encouragement. I hope this continues for you.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Nov 28, 2015 03:49AM NM71 wrote:

Musicians?

I am wondering if there are any here who play musical instruments, who have advice, or we could research together.

I developed mild LE 3 weeks after my surgery - in August 2015, mostly in my right ring and little finger. My arm/hand tests as 7% larger. I had 7 nodes removed (1 positive), then later had 33 days of radiation, of course radiating lymph nodes too, which I finished at the end of Oct. So far things are not worse. But nothing is more important to me at this phase than playing various instruments, in my 3 musical groups (I'm 69), but in good shape for my age.

The swelling started (3 weeks after surgery) then 2 days after my surgeon broke a cord (from cording) just above my elbow, and I stupidly, a few days later played my bass recorder for a few 2 hour sessions over a few days in a row. I've also wondered if it is cubital tunnel syndrome which affects those 2 fingers, but again I have been diagnosed with mild LE.

What I do now is wrap at least my ring finger on the lower part of my finger when I play, and both fingers when not playing. I've started again using my sleeve/glove when exercising (aerobics).

Dx 3/18/2015, IDC, Right, 2cm, Stage IIB, 1/7 nodes, ER+/PR+, HER2- Chemotherapy 4/19/2015 AC Surgery 7/21/2015 Lumpectomy; Lymph node removal: Right Radiation Therapy 9/8/2015 Whole-breast Hormonal Therapy 11/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 28, 2015 02:09PM carol57 wrote:

NM71, I'm no musician, but if she doesn't respond to your post, try PMing our forum member vlnrph, who is.

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Feb 4, 2016 04:04PM ChiSandy wrote:

I'm a guitarist and dulcimerist who had a lumpectomy and SNB this past September. Only 4 nodes were removed--2 ea. sentinel & non-sentinel--and all were negative. I developed a sizable seroma at the SNB site, and it ruptured three weeks post-op and had to be sutured (so far so good). BUT after I started radiation, my tumor-cavity seroma (theretofore invisible) began to swell massively and the subcutaneous capsule around it eventually fibrosed. My breast now has a hard bulge at the side which will likely be permanent and forced me to go up a band and cup size (to 40H or I). I am obese but only mildly-to-moderately so (wearing a size XL-1X in tops & dresses and size 16 in jeans).

Shortly after finishing radiation I developed some tightness and soreness (and a palpable knot) on the inside of my forearm. I followed my surgeon's nurse's precaution and wore a compression sleeve & gauntlet on a couple of long int'l flights--on the return, I noticed some finger swelling; and for a little while when I was in the mts. in Sicily my arm felt heavy and slightly tight--but normalized at sea level. Upon my return I made an appt. with a lymphedema specialist but felt sort of silly about it because by the time I saw him my symptoms had disappeared. He measured me and declared I didn't have LE and with only 4 nodes out he wouldn't have prescribed compression, but because I had had cording symptoms he was diagnosing me with Stage 0 (subclinical) LE so that Medicare would cover therapy sessions, and because I mentioned finger swelling in-flight with a gauntlet he prescribed me a glove instead for altitude and strenuous exercise only (the gauntlet would be okay for normal exercise, he said).

Two sessions into therapy I began experiencing subtle swelling and return of the cording pain on non-therapy days; just lifting a heavy guitar case and carrying it five feet resulted in some exacerbation of pain, so I wore kinesio-tape, sleeve & gauntlet to my next gig; the next day I grated some hard cheese and scooped some hard ice cream--by morning the swelling was quite visible and I couldn't bear to dorsiflex my wrist with my arm raised, touch the inside of the arm when stretched, or even do my self-MLD massage. My therapist told me I was now officially at Stage 1 (mild) LE, with cording (the cords are hidden beneath the subcutaneous fat but can be slightly palpated) and for the next 2 wks I must wear compression now during my waking hours (except for showering and doing MLD). I can play with the gauntlet on, but not with the glove--it's too stiff and the fabric hits the strings (I have short fingers and the less-restrictive gloves are way too long in the fingers--the only way to get those with short enough fingers is to buy a child-size, which may otherwise be too tight).

I have committed to several concerts in the coming months (including one next week) and am terrified that I will either be unable to play or would exacerbate my LE by playing w/o compression. I'd love to hear from the original poster (will PM her in case she doesn't lurk on these boards any more) to find out how she fared.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Apr 7, 2016 02:46AM Maggerle wrote:

Musicgal...I'm hoping upon hope it is gone! I'm just starting treatment after an exchange 3 months ago....Haven't even done my first appointment (intake) yet...However I was 25 years out for the bilateral MX's so this was a huge shocker for me...I want to believe you are healed, and I want to believe I will be too! Maggie


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Apr 7, 2016 07:00AM Binney4 wrote:

ChiSandy, talk to your therapist about getting a custom glove. That will allow you to adjust the finger length perfectly for your needs. I'd also suggest you ask about ordering them from Gottfried Medical. They're made here in the U.S. so the orders are quicker than other companies, and the fabric is softer and more flexible as well. (I am compression sensitive and can't use other brands). Do it as soon as you can, so you have time to make sure the fit is right and get used to using them.

Please do keep us posted and let us know what you discover!

Be well,
Binney

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Nov 24, 2018 11:05AM Musicgal wrote:

I am the original poster for " lymphedema is gone?"

Although I play the piano and Irish whistle, musicgal is because I sponsor free chamber music in my town.

Another much worse side effect( just posted under subaceous Hyperplasia) prevents me from wearing a sleeve or doing massage, because excess sebum is draining in the opposite direction. Despite this, and plenty of heavy lifting and exercise, my lymphedema is minimal to none. Actually, my lymphedema arm is smaller than the other because of sebum filling up my left forearm.

I am SO relieved thus far, as this other side effect has been misery and pain for almost three years since I finished my course of ten years on Tamoxifen. I pray no one else has this problem, but it IS ALL about hormones...

I hope your concerts go well!!

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Nov 28, 2018 12:29PM hugz4u wrote:

Musical. Good news. Just do keep an eye on arm cause it can rear its ugly head. Unless you have beginning stage it’s not reversible so it’s there but behaving. Keep exercising because that helps drain fluid but do this gradually if you quit lifting weights for a while otherwise you could start something. Recommendation by a university study is measly one pound weights until you have no sign of a flare. Finally after three years I am doing 10 lb bicep curls everyone progresses different. me slow!

Man I’m so excited for you though! Not sure on this but I wonder if maybe a few lymph vessels are rerouting to drain you. That may be why you have an improvement. I’m having chocolate in celebration for you!

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