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StepUp-SpeakOut.Org BlogSpot

Hello and welcome to the StepUp-SpeakOut.Org Blog Spot.

We will be using this blog for fast updates on news and information in the field of Secondary Lymphedema as a result of Breast Cancer.

We will be posting articles and information on new research and treatments, legislative and insurance information, and other pertinent information, and invite your comments.

Wednesday, September 26, 2012

ONS PEP Symptom Management Lymphedema App

Publisher's Description

From KiwiTech: Discover evidence-based interventions for Lymphedema, a common side effect of cancer and its treatment. This app is produced by the Oncology Nursing Society (ONS), a professional organization of more than 36,000 cancer nurses and other healthcare professionals. You can find more ONS resources at and

Read more: ONS PEP Symptom Management - Lymphedema - CNET

LymphTracker App Now Available in App Store

  1. LymphTracker
    An app to manage lymphedema so that you can get back to your life. Send detailed measurement reports to your doctor ...
  2. iPhone, iPad, and iPod Touch

    LymphTracker is a universal app on the App Store. Maximize the effectiveness of your treatment by trying both the mobile and tablet versions.

American Lymphedema Framework iPhone/iPad App to find LE Therapists


Look4LE is an app brought to you by the American Lymphedema Framework Project (ALFP). In addition to providing links to a variety of resources about lymphedema, the app allows users to search by name or geographic location (using their current location, city or zip code) to identify specialists in their area. Each therapist can provide his or her contact information, including phone number, email address, and website to be displayed on a personal profile page. Additionally, users can get directions to the specialist or even add the information to the system address book. Currently there are over 900 therapists in the directory, and the list will continue to grow as more specialists opt-in.

How It Works

The American Lymphedema Framework Project (ALFP) maintains a list of therapists across the country. The list is updated and made available from the app in both a directory and a map view.

American Lymphedema Framework iPhone/iPad App to find  LE Therapists

Go to the Apple App Store on your device.  Search for Look4LE

Download app and find a therapist

How to Monitor Your Arm for Lymphedema after Breast Cancer

How to Monitor Your Arm for Lymphedema after Breast Cancer

Tuesday, September 25, 2012


I had a conversation with a masseuse yesterday. He mentioned how most of his clients have compromised lymphatic movement, and the first thing he teaches them is therapeutic breathing. So I asked him about breathing, specifically.  We know about breathing in through the nose, out through the mouth, getting a good tummy breath, right?  What he added was the importance of a full abdominal tightening/crunch which includes the butt and a kegel squeeze at the end of the exhale. Then the inhale is started by abdominal relaxation, then filling the lungs. I found it to be helpful.  - kcshreve

Tips for keeping Cuticles and Fingers Moisturized and Crack-Free

kcshreve shares her cuticle/finger moisturizing suggestions:

I thought there would be others who may want to share their "tricks" as to how to prevent dryness/cracked skin in fingers which are regularly being wrapped.  I have dry skin to begin with, so this has been an increasing problem.  I've had good success this week (finally) by using an emollient lip moisturizer by Alba instead of the lotion I was trying.  Just before wrapping the fingers, I've been putting this on the cuticles. They've been looking better every morning and today, for the first time in forever, I have no hangnails.  Yay!  What else has worked for y'all? (I can say that while I'm still living in TX.)

jinky shares her cuticle/finger moisturizing suggestions:

For me Bag Balm is the only thing that works for me.....put some in thin gloves at night and those oh so sore cracked splits near the nail get fixed up. Also can put it on during the day but the smell isn't good but I don't care as it works. This is what the farmers use on the cows teats. It works........le hugs jinky .....antiseptic to and cost $15 in Canada.
Any other helpful suggetions?

History of Lymphedema


About the only good thing you can say about lymphedema is that its international symbol is the butterfly. Graceful, colorful, ephemeral! It's an emblem we all wish we could emulate as we lumber through the day with our unwieldy wrapped arm or our awkward gloves.

So we've been searching for the history of this symbol and, while we've uncovered some interesting theories, we still don't know whom to thank for this bright spot in our lymphedema experience. Our search continues, but in the meantime we thought you'd enjoy knowing what we've heard so far.
Ann Erlich over at Lymphnotes tells us that her first lymphedema therapist used the expression "gentle as a butterfly kiss" to describe the soft hand strokes of Manual Lymph Drainage (MLD). Of course if your therapist is also doing massage to deal with those tough areas of scar tissue and fibrosis, that butterfly image might flutter right out the window. But it's still a good reminder for us when we do our own self-MLD to keep our touch light and graceful.
Even more cheering is the meaning behind the butterfly symbolism: exquisite new life emerging from the clumsy and colorless cocoon. Hang in there! Right through the wrapping, the grief and the steep learning curve of therapy, that beauty remains within us, hidden for the moment perhaps, but ready to emerge eventually with all our dreams and passions still intact.

Then again – there are those days. . .

Reprinted by permission of Gary McCoy Copyright 2008

Please visit our page History of Lymphedema to read how this condition existed back in the days of early Egypt, and even affected Royalty.

Monday, September 24, 2012

Series of six Videos of Self MLD by Michigan State University

StepUp SpeakOut shared Lymphedema Guru's status update.

Lymphedema Guru
Great Series of 6 Videos by the Michigan State University on Self-MLD for the Upper Extremity, Home Exercise Program for the Upper and Lower Extremities, and Compression Bandaging for the Arm and the Leg.