lymphedema

Hi, Debbie!
Welcome back! Good to see you posting again! You joined not long after me... So, I noticed your absence. Hope all is well, in general.

I do not have lymphedema. Not yet, at least. However, almost immediately following lumpectomy surgery (with 15 nodes total removed, 7 from breast & 8 from underarm) - I became a volunteer participant in a national clinical study for the Manual Lymphatic Drainage (MLD) self-massage technique, and via the Lymphedema Treatment Center, which was connected to the hospitals and Kellogg Cancer Care Centers where I was treated. And, that was almost six years ago at this point. I also have and use both a compression sleeve and gauntlet. And, I implement many, many precautions each and every day. I realize that my experience is different - because its purpose is preventative. Someone who has already developed the condition, like you, cannot self-massage it away. You do need professional therapy.

I can recommend an excellent book as a resource: Lymphedema - A Breast Cancer Patient's Guide to Prevention and Healing, by Jeannie Burt & Gwen White, P.T.

Hopefully, others will step forward and provide more first-hand information. Also, I think you should outright ask your current physical therapist. Does it get worse before it gets better? And, how long for results? In the meantime, wishing you best of luck.

Kind regards, Susan

P.S.: Are you gardening? :-) I always wear my sleeve and gauntlet while gardening...

Hi,
I have mild lymphedema
Hi,
I have mild lymphedema and was sent to a pt that was trained and certified for it. It worked wonders but she did mine every day for one week and the 2nd week she did 3 days and I was supposed to do them at home. I only had 9 sessions and my arm was back to normal. I'm not always great wearing my garment either but I don't let it go too long. We always have to see, or at least I do, how far I can go without making things worse, how far can we push that envelope.

Love and gentle hugs,
Donna

RE said:

Lymphedema info
Debbie, love your photo it is so full of love! Now on to the subject at hand. I have been dealing with lymphedema for about 10 years. Messaging the arm is important to controlling the swelling and getting the lymph fluid moving. The key is to have someone who knows what they are doing to teach you how to do it. It is not the typical message because that can indeed increase the swelling. I go to a physical therapist every 4 months for 6 weeks twice a week for reteaching and special message and exercises. This always brings me great comfort and eases the swelling for about a month afterwards. I also wear a pressure sleeve nearly each day for about 6 to 8 hours which helps with the swelling, discomfort and protects it from abrasions. Also important if you go on a trip you should have antibiotics on hand (my doctor gives me Keeflex) incase your arm becomes infected while away. I am attaching a bit of info for you, on my page here there are an additional 3 pages of information on the subject. Hope this has helped.

Also check out this site it has a lot of good info. www.lymphnet.org/



RE

Thank you RE......
Thank you RE, for posting that. I have been very negligent in being careful with that arm. I ALWAYS overexert (to the point of ibuprofen and heating pad to relieve the ache) because it is my right arm and I am right handed. But sheesh! It's hard to scrub a bathtub or a kitchen floor with my left hand!
I guess I had better start being more careful.

And Susan, I had better look into getting some of those gardening gloves too. No matter how careful I try to be, I inevitably get jabbed by a rose thorn.

Thanks for reminding me, and also for the new info here.

CR

tatooedinpink said:

thank you!
Thanks for all the info. I knew much of it, but needed you to tell me to quit ignoring the problem :-)
I did go to an OT for two or three appts, and the larger concern with them, was teaching me how to "wrap" my arm. According to them, the compression sleeve and gauntlet are good maintenance, but wrapping is the only method to actually reduce the swelling. I went crazy trying to find the time and willingness, and the proper way to wrap.

I will talk to my dr. again, and get approved for some additional appointments, and maybe I just need to find more professional help in my area.

I have gone to the lymphnet site and I think that is actually where I found the trained therapist, there, or the ACS site, can't remember.

Thanks for all the info and the encouragement.

Yes, got really busy with work and life, and hadn't logged on in awhile.
Thanks again, Susan! I just want to HUG your doggie!!!!!

Debbie

Wrapping
Hi I went to see the specialist yesterday. I am going to start having my arm wrapped next Monday. I have to go 4 times a week for 2 weeks then 2 times a week for 2 weeks. The therapist is going to wrap my arm. She said that is really effective at getting rid of the fluid. That was my first time going soI will let you know what happens. Nancy

tatooedinpink said:

CR, sounds like you needed a
CR, sounds like you needed a gentle lecture too :-)

Take care of yourself, and quit scrubbing that bathtub!!!!

Debbie

LOL Debbie......
I asked my onc just yesterday is he would write me a script for NO HOUSEWORK! He didn't, gosh darn it!

CR

cats_toy said:

never had it - hopefully never will
Everyone says you have to be careful for the rest of your life regarding the arm of the no-nondes. I haven't had any problems so far (2 years), but I did have 3 of my fingers swell. They think it is the Arimidex, not lympho (not to be confused with nympho). I just keep an eye on it. Hope all of you do well with your experiments!

=^..^=

tasha_111 said:

I did
It was excruciatingly painful, Right to the base of the thumb and hurting the whole of the arm. I couldn't even touch my arm or thumb as it felt horribly bruised and tender and well sensitive.
It only occurs when I wear clothes that are tight or contact with the skin, I am in full time work now, bending and stretching and lifting and doing all kinds of stuff I would have never have believed. Just lay off any constrictive clothing on the "Special" arm......You can do anything!

Hugs Jxxxxxxxxxxxxxxxxxxxxxx

Lymphatron
I have lymphatron machine that I slip my arm into the sleeve and it electronically massages your arm. It works really well. I have such a hard time wearing the sleeve garment. but i should, it would help keep the swelling down after I use it. Some days I have swelling and sometimes not. But I notice that when I work (and i walk alot, my hand is hanging down (of course) and my hand and fingers start to swell after about 3 hours or so. Hope yours gets better. I got a lot of info from this post.
hugs Jackie

rjjj said:

Lymphatron
I have lymphatron machine that I slip my arm into the sleeve and it electronically massages your arm. It works really well. I have such a hard time wearing the sleeve garment. but i should, it would help keep the swelling down after I use it. Some days I have swelling and sometimes not. But I notice that when I work (and i walk alot, my hand is hanging down (of course) and my hand and fingers start to swell after about 3 hours or so. Hope yours gets better. I got a lot of info from this post.
hugs Jackie

too true about walking
My friend and I walk our neighborhood, I keep my hands up and waving (I try the beauty queen wave for the neighbors who are out to see!)
=^..^=