Topic: Key links to Lymphedema pages on bc.o site

Hi, my name is Susan and I was diagnosed with Her2 breast cancer in my left breast in 2/05. I had 2 lumpectomies, chemo and 33 rounds of radiation. I then developed lymphedema in my left arm in 1/07. In March of 07 I began using the Sequential Circulator - an arm sleeve and pump made by a company called OJMedtech out of NY. This product, used daily has kept my lymphedema from progressing, and has actually reduced the size of my arm. I am much more comfortable since beginning use. I hope this helps those of you who are still searching for something to help.

Susan

Welcome, Susan!

Sorry it's taken so long for anyone to answer your post, but this thread at the top of the board has been here so long I think nobody looks at it anymore.

Glad you've joined us, but sorry it's lymphedema that brings us together! Sequential-type pumps can be a helpful adjunct to Complete Decongestive Therapy (though I've never heard of yours in particular), and many of the gals here use them. Glad it's helping keep you comfortable and in control.

Congrats on being three years out from bc treatment. Do come join in on the other more active threads below this one on the Lymphedema board, and I'm sure lots of other women will be there to welcome you. (This top one was started by the moderators over a year ago, so it's sort of off our radar.)

Be well!

Binney 

I just had bilateral on June 3 my left arm, cancer side I had 7 nodes removed and a few in 06 when I was first dxed. My arm is huge and numb, I hope some of it will go away. Please any advise please..I like the idea of pump and sleeve, or will some of it go away.

Hi Binney and Friends   I got my ALERT:LYMPHEDEMA No Blood Tests,Blood pressure,IV or Injections into this Leg!10 green anklets with snaps. You can order them(free) on www.lymphedema.com or 1-800-29-EDEMA

I also got a book of other things for lymphedema. I need to get going I see the cancer Dr tomorrow. If he does nothing I am changing. Very swollen and sore. Gentle hugs, Debbie 

Hi Debbie,

Isn't it amazing how much this LE can cost?!  I have a $40 copay for each MLD session and insurance only covers 1/2 of medical supplies. You should definately call them.  Your garment should be covered if ordered when insurance was effective.  I was concerned with my out of pocket costs and the American Cancer Society sent me a letter of organizations that help with LE supplies and copays.  I don't know how much they would help but it's worth a try.  Maybe the ACS could give you some assistence with the insurance issue, too?  If you send me a private message, I'll email the list to you.  Also, most people don't know that if they receive services at a non-profit hospital, they may qualify for reduced out of pocket expense.  My hospital in PA, has a sliding scale depending on income and I was surprised how high the threshold was to qualify for the first discount level. I only found out about it a couple months ago and I used to work there until the bc!   It's worth looking into.  It really helped me handle the therapy costs.

Good luck to you Thurs and prayers that you get your garments soon.

Alyjens 

Binney, this is the context of the letter I received from the American Cancer Society in PA:

      .....included is a list of possible resoures for assistance with lymphedema suppies and copays.  Please contact each and explain your situation.  There may be eligibility criteria, but they will be able to clarify their services when you call.

Patient Advocate Foundation (PAF)    866-512-3861

Living Beyond Breast Cancer             610-645-4567   (local PA number, but worth a try)

Linda Creed Breast Cancer Foundation  877-992-7333

American Breast Cancer Foundation (ABCF)  877-539-2543

Patient Access Network Foundation (PANF)   866-316-7263

HealthWell Foundation        800-675-8416

CancerCare              800-813-4673

I don't know if these are local to me in the Phila, PA area or not.  So far, between the help the hospital is giving me and my insurance, I haven't felt the need to call.  Though with my upcoming rads, if I can't work for a while, I'll need to.  It can't hurt to call them and see if they are a national organization or not.  Or I would suggest calling your local ACS and seeing if they have their own list of resources for your area.

Hope this helps some of you!

Alyjens

Hi, Maura!

I sure hope the new garments fit. It can be a real hassle finding the right combination of things to keep the swelling down. Have you had the LE therapy with massage and wrapping? That's the best way to start, because it not only gets the swelling down but teaches you to do the massage and wrapping to help keep it that way. 

CONGRATS on being near the end of active treatment!!! About time to start taking your life back. Whew!

Keep us posted on your new sleeve (and glove?)

Big hugs!
Binney

Whew! Last lap! Hope the radiation goes quickly and smoothly. GOOD for you for seeing a LE PT! Make sure it's one who's well qualified. Here's some information on finding one near you if you need help with that:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Do let us know how it goes. It'll be good!
Big hugs,
Binney

Hi, Unique,

All the names on the whole list will be fully-trained lymphedema therapists (both PTs and OTs). The ones with "member" after their name have paid an extra $45 to join the LANA Therapist Board. I'm not sure why they do that (except that they obviously get to list their names first!) So do feel free to use the ones from the second group -- no problem there.

How's the rads coming along? Seems like forever when you're going through it, but it really does end, so hang in there!

Let us know what you discover!
Binney

Thanks, Kerry,
Made my day!
Binney

Oooh such a quiet board.

Anyway, I went in to see my LANA therapist today, Jane Roche, and she was EXCELLENT.

She massaged an area about 3" below my armpit that has a little bit of swelling, snapped some cording (this does not hurt), and gave me mucho exercises and told me to get a script from my rad onc for a pressure sleeve. I feel I am in good hands to prevent lymphedema.