Acupuncture Trial for chronic LE at Sloan-Kettering

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Letlet
Letlet Member Posts: 1,053
edited June 2014 in Lymphedema

Hi, I received this letter a couple of weeks ago from MSK and thought I would share. I don't know if this is open only to patients that go to Sloan (no indication in the letter)

From Barrie Cassileth, MS, PhD., Chief, Integrative Medicine Service

"Because you received treatment for breast cancer, we thought you might be interested in our study for the treatment of lympedema"...etc, etc. (It goes on to define LE)

"Available treatments for lymphedema usually are not effective. Recent evidence suggests that acupuncture may help reduce the swelling of LE. Our study aims to determine the effects of acupuncture on chronic LE in women after breast cancer treatment. Each patient will receive two acupuncture treatment a week for four consecutive weeks.

To be eligible, patients must be at least age 18 and meet additional criteria, including"

Lymphedema in an arm as result of breast cancer treatment

Diagnosed with lymphedema for at least 6 months and less than 5 years

The affected arm must be more than 2 cm larger than the unaffected arm

"If you think you may qualify and would like to hear more about the study, pleast contact Research Assistant ******* at 646-888-0811. Approval for your participation in the study will be obtained from your physician"

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

    I'm sorry, but I take tremendous offense at this line:

    Available treatments for lymphedema usually are not effective.

    And accupunture has never been shown to be effective for lymphedema, and one of the national expert physicians who presented at the NLN conference was a trained accupuncturist and never found it worked. And there are theoretical issues if the needles are used in a compromised quadrant.

    Sloan Kettering should be ashamed of themselves.

    And Barrie Cassileth, should do some research into treatment of LE before she makes that kind of assertion and bases a study on it:

    http://www.mskcc.org/prg/prg/bios/525.cfm

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Just in case anyone here would like to ask her for clarification, she's availble by email here:
    Cassileth@mskcc.org

    I'm always glad when studies are started to focus on issues like this one, but you just want to see them being carried out by people with less of an agenda that Ms. Cassileth seems to have. Still, I do look forward to the results, as this is a question that comes up over and over here.

    Ah, science!
    Binney

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  • Letlet
    Letlet Member Posts: 1,053
    edited March 2011

    Well I mean it IS a trial which means they are not promising anything at all. Even the letter states acupuncture "may" help reduce the swelling. The study aims to "determine the effect of chronic LE in women after BC treatment". Participants will have to sign consent which means it will be drilled into them the possible risks, benefits and that no promises are being made. It could go two ways, they can find out that acupuncture actually helps LE or they can publish and definitely say that acupuncture doesn't do anything at all to alleviate LE. In which case I take it as a sign that MSK is recognizing the seriousness of LE. My BS who took 23 nodes told me prior to surgery that my risk for developing LE was low because my arm was small to begin with. I nodded my head at the time but now I know that it was total bs.

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

    Letlet--it is good that they're doing the trial, but I did write to the head of the trial and object to her use of the statement that there is no treatment for LE.

    I have small arms too--didn't help me dodge that bullet.

    Kira

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  • Marple
    Marple Member Posts: 19,143
    edited March 2011

    There is also the possibility that the trial could show acupuncture causes harm.  That would be my biggest fear entering into it. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Letlet, I agree with you about the value of trying to find this out. This really does come up here a lot, and having real answers will be a huge help, so THANK YOU for posting it.Smile I'm assuming that looking at possible harm will be a part of the study -- a control group receiving regular CDT without the acupuncture would be important as a comparison of, say, infection rates.

    But I too object to the statement that "available treatments for lymphedema are usually not effective." In fact, done correctly they're almost always effective. It might also be helpful to look at who it helps and who it doesn't, so I hope they're set up to study that.

    And I certainly hope they don't intend to treat with ONLY acupuncture, because prompt treatment has already been shown to be important for good control and ease of management long term, so delaying standard treatment could be damaging in ways they might not be able to measure. I'll see what I can find out about the study structure and post what I discover.

    Be well!
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Hi all.

    It is actually my accupuncturist doing the trial.

    For what it's worth he is a smart guy, and has been helpful and concerned through my strange atypical journey.

    Ironically last time I saw him I did not have lymphedema confirmed so I did not end up in the study.

    You do have to have needles in the compromised quadrant for the study. Otherwise he will still do accupucture in general. 

    I realize I am the exception, my le came on with a SEVERE case of frozen shoulder that was probably appropriate for accupuncture.

    I will also say since I am not in the trial there was no pressure to do the needles there.

    Even the head of MSK's LE department has some doubts about this.

    Still when all is said and done, I might be temped to try it.

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