Lymphedema Exercises DVDs?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2011

    Suzy, old as black pepper? I love it. It's just that she's kind of patronizing and I can't take her brother with the scarf....And it reminds me of chair exercise in the assisted living. But, it does make me feel better. 

    Mary: I am so impressed--I need to seriously exercise

    Nitocris: there are medical studies that prove that lymphedema therapy works. If you need any, just let me know. You are an inspiration, and I know Binney is pulling all her lymphedema strings to get you some assistance--and she has lots of contacts.

    For example--a quick pubmed search of lymphedema therapy reveals this:

    http://www.ncbi.nlm.nih.gov/pubmed/21945108Int J Radiat Oncol Biol Phys. 2011 Sep 22. [Epub ahead of print]
    Breast Cancer-Related Arm Lymphedema: Incidence Rates, Diagnostic Techniques, Optimal Management and Risk Reduction Strategies.
    Shah C, Vicini FA.
    Source

    Department of Radiation Oncology, William Beaumont Hospital, Royal Oak, MI.
    Abstract

    As more women survive breast cancer, long-term toxicities affecting their quality of life, such as lymphedema (LE) of the arm, gain importance. Although numerous studies have attempted to determine incidence rates, identify optimal diagnostic tests, enumerate efficacious treatment strategies and outline risk reduction guidelines for breast cancer-related lymphedema (BCRL), few groups have consistently agreed on any of these issues. As a result, standardized recommendations are still lacking. This review will summarize the latest data addressing all of these concerns in order to provide patients and health care providers with optimal, contemporary recommendations. Published incidence rates for BCRL vary substantially with a range of 2-65% based on surgical technique, axillary sampling method, radiation therapy fields, and the use of chemotherapy. Newer clinical assessment tools can potentially identify BCRL in patients with subclinical disease with prospective data suggesting that early diagnosis and management with noninvasive therapy can lead to excellent outcomes. Multiple therapies exist with treatments defined by the severity of BCRL present. Currently, the standard of care for BCRL in patients with significant LE is complex decongestive physiotherapy (CDP). Contemporary data also suggest that a multidisciplinary approach to the management of BCRL should begin prior to definitive treatment for breast cancer employing patient-specific surgical, radiation therapy, and chemotherapy paradigms that limit risks. Further, prospective clinical assessments before and after treatment should be employed to diagnose subclinical disease. In those patients who require aggressive locoregional management, prophylactic therapies and the use of CDP can help reduce the long-term sequelae of BCRL.

    I read that abstract, and think--my we've come a long way. They acknowledge that chemo, radiation and surgical technique are important in LE and suggest the team all talk to each other to minmize the risk and early LE therapy is best. 

    Even when I was treated, none of this was standard. My rad onc told me that studies proved that radiation NEVER caused LE....

    Lots more articles where that came from.

    Kira


    Kira

  • Suzybelle
    Suzybelle Member Posts: 920
    edited October 2011

    Binney, I think 'old as black pepper' is a southern-ism, but feel free to use it in your locale.  Cool

    I'm not sure about how to make it more 'hip'...as bad as I hate to say it, James and the gang are kind of comforting, but I really do feel like Methusalah after I do it.  But it sure does get the lymphatic fluid moving.  HOWEVER, the macerana (SP?) music has GOT to go.  That makes me want to come out of my skin.  I love Dancing Queen though, and love to sing out when it's on.  I'm an Abba nerd.

    Natsfan, you are brilliant.  I definitely will try to memorize the moves and do them to different music - but I will have to go back to Sherry's dvd because i bet I do them too fast.  I have a bad, bad habit of doing everything LE related too fast, and that's worse than not doing it at all.

  • Nitocris
    Nitocris Member Posts: 187
    edited October 2011

    Hi Kira,

     Thanks for the information.  I am going to copy this abstract and add it to other documents to support our claim.  The more documentation we have, the better. MLD is an internationally recognized therapy not only as a treatment for lymphedema, but for prevention as well.  Prevention is something which is very much neglected here.  One member of our group who was asking for a lymphatic therapy treatment (usually 10 times) got the following answer:  "we don't give therapy only for prevention!!".  So, she had to go to a private therapist. 

     Living with this disease is already hard enough,  the attitude of some medical personel certainely does not help!.  There are days when frustration and anger take over. Why do we have to fight like that to get recognition and proper treatment?  I really understand that some women are so drained by this fight that they just give up. 

    Anyway, for the moment, our fight continues.  Let's see if  a budget will be alloted for LE treatment for next year.

    Take care

  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2011

    Nitocris, if you ever need whole articles, we can exchange emails by pm. You are such an inspiration.

    In the US, I've had patients denied insurance coverage for LE prevention: so I just code it as LE--it is latent LE.

    Kira

  • Nitocris
    Nitocris Member Posts: 187
    edited October 2011

    Hi Kira,

     Thank you very very much for your help.  You are a "gold mine" of knowledge on Lymphedema and such a wonderful support for many women on this board.

    Thursday, I have a meeting with the secretary of the breastcancer association.  Let's hope we make one more step forward!

    All the best

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