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Topic: Optimizing self care

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

Posted on: Dec 9, 2017 04:39PM

Leydi wrote:

So, I had a series of appointments with a physical therapist who purportedly specialized in lymphedema treatment several months ago. I had no visible swelling at that point and had actually asked my surgeon for a referral to a PT to help with scarring under my arm (full ALND). Let's just say I was not impressed and I've since looked online and can not find her listed on any of the lymphedema certification lists of therapists.

Now I have visible swelling in my upper arm as well as aching, etc. I know I need help. My surgeon has since retired so I asked my GP for a referral. Unfortunately, when the referral appointment call came, it was for the same therapist I saw last time. I plan to call the one place nearby who have certified LANA therapists and find out if they take my insurance and if they will see me.

In the meantime, I'm hoping some folks on here with personal experience and, hopefully, competent therapy sessions, can help answer some questions on how I can optimize my self care.

I'm trying to drink lots of water, do the exercises and MLD that the first therapist taught me, and elevate the arm. I also do wear a compression sleeve. Unfortunately, I have no confidence in what I'm doing as every time I tried asking the therapist for clarification on exactly how to do the exercises or MLD or which to do first (exercises or MLD), or whether to perform MLD on bare skin or through clothes, etc., her standard response was "it doesn't matter."

Does it matter? What do you find most helpful when combating new swelling? Any online resources that you have found especially effective?

Age: 47. Dx 6/2016, ILC, Both breasts, 2cm, Grade 2, ER+/PR+, HER2- Surgery 7/28/2016 Lymph node removal: Left, Sentinel; Mastectomy Chemotherapy 8/31/2016 AC + T (Taxol) Hormonal Therapy 9/7/2016 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast
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Dec 9, 2017 05:01PM - edited Dec 9, 2017 05:02PM by Castigame


I had some serious shit like you did. I had DMX, lifetime dose of chemo, radiation, elbow surgery, and total hyst within 8.5 mo time frame. I am going to be 48 this coming Jan.

I have upper arm lymphedema which I think have a lot to do w all the surgeries and skin sparing mastectomy. Yes I wear compression sleeve min 8 hrs a day. I exercise as early as possible. My choice of exercise is just walk. I plan to start swimming in the new year. I had total of 40 sessions of PT which was helpful. I was told by my therapist to do MLD at night. I was not good at MLD. So I got a lymphedema pump which I use almost daily. Please check it out. Highly recommend it.

I would love to hear from you please PM me.

Mimi Dx 1/11/2017, IDC, Left, <1cm, Stage IA, 0/2 nodes Dx 1/11/2017, IDC: Papillary/IDC: Cribriform, Right, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2- (IHC) Surgery 2/15/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Chemotherapy 3/21/2017 Radiation Therapy 7/31/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 10/30/2017
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Dec 10, 2017 10:07AM - edited Dec 10, 2017 10:53AM by hugz4u

Leydl welcome go to stepup-speak out.org to find a certified therapist and get educated with le.

For your therapist to tell you can do le over cloths is idiotic. Run fast! It's done on bare skin, soft as petting a cat because our lymph system sits just under our skin and it's delicate.

I go to the gym and my girl said it's good to do MLD before and after exercise but realizes this is a lot of care and not always possible so she said do MLD before exercise. That said I sure can't go naked at the gym to do it!

Instead I do something that mimics MLD. It's called lebed method. By sherry lebed Davis. I think that's her name. I ordered her cd ten years ago and do the upper body portion only before exercise. This works for me. You tube it. It's about ten exercises preformed like tai chi. Drains lymph build up. It's very relaxing. Then I do 5 minutes of gentle stretches to prepare body and then exercise. Good Stretch after and done.

Walking is great for le. If you dangle arms down and your finding fluid buildup then hold your arms like a jogger. This usually works.

Unless your swimming lots now and use to it you need to start out slow. Just walking above shoulders is the best because it's like wearing a full compression garment. No sleeve or hand garments needed in water.

Not sure when the best time is to do MLD I just know is very helpful.

Stepup-speakout.org is excellent. Some wonderful girls from here developed the site. It will educate you in everything and then you can ask us questions to.

A pump is good but many of us can't afford one and your not to rely solely on the pump. Self care is what you need.

Compression on arm and glove or gauntlet is recommended so your not pushing fluid into the hand. A good therapist knows this.

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Dec 11, 2017 05:51PM Leydi wrote:

Thank you, ladies. I found a near-by PT clinic that had two therapists with LANA certification. They had a cancellation and were able to see me the same day. She took a detailed health history and many measurements. She's advising a different arm sleeve and adding a nighttime oven mitt (sorry! not sure what this thing is called but it looks like a full-arm oven mitt!). She is going to see what she can get covered by my insurance before the end of December since I have met my out-of-pocket max this year and would have to start all over in January (high deductible health plan).

This is already miles ahead of my first therapist who measured my arm, handed me the measurements, and I was on my own to coordinate with insurance and order a sleeve.

I have two more appointments with her this week to go over recommended exercises and MLD techniques.

Age: 47. Dx 6/2016, ILC, Both breasts, 2cm, Grade 2, ER+/PR+, HER2- Surgery 7/28/2016 Lymph node removal: Left, Sentinel; Mastectomy Chemotherapy 8/31/2016 AC + T (Taxol) Hormonal Therapy 9/7/2016 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast
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Dec 12, 2017 09:15AM hugz4u wrote:

Leydi, yeah I love a success story! Good for you for finding Lana certified therapist.

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Dec 13, 2017 02:13PM Kicks wrote:

The "oven mitt" is a actually a 'Night Garment'. Day garments (sleeves and gloves) work 'actively' as in while up and moving. Night garments work 'passively' as in while not moving/sleeping.

You didn't mention (or I missed it) if you have been wrapped (or taught to wrap) to get swelling down before measurements for new sleeve for the best fit.

Another thought - some of us are very sensitive to compression levels. For most, the mid level works great but not for all. Some need a lower level compression and some need a higher level. For me, I have to have low compression as higher/mid level causes swelling quickly. For some, a higher level is necessary.

Can't give any idea of dealing with insurances. My care is through VA so my custom garments are ordered and they are sent to me.

We are each so unique and there is NO 'One Size Fits All' when it comes to what works for all of us.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes

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