Kind of exciting:MSK investigating LE drugs!

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cookiegal
cookiegal Member Posts: 3,296
edited October 2015 in Lymphedema

Just read this in the newsletter. Babak Mehrara eara is the doctor's name.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited July 2015


    That is exciting news!

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  • Pixiepixie
    Pixiepixie Member Posts: 19
    edited July 2015

    Can you tell us more about what you've read please? I'm newly diagnosed with LE and so worried! I have an 8month son who in struggling to lift. My hand is swollen and feels so heavy!


    xx

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2015

    pixie pixie these are small scale stage 2 trials, so for now I think your best bet is traditional treatment.

    My onc was not wildly enthusiastic about this, but he is emailing the doctor and I expressed my strong desire to be in the trial. He is not sure my LE is severe enough. But I am pretty excited. I am supposed to call tomorrow

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2015

    Cookiegal, can you steer us to the information? What drugs are they trialling? Please do keep us posted!

    Hugs,
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2015

    Binney, most of the article was about mapping before a transplant, there there was one paragraph saying they are testing drugs too. It was in the Sloan Newsletter, "Center News." He is a reconstruction surgeon. My onc said he will email him. I am supposed to call tomorrow. My LE may be too mild, or my work schedule may not work, but what if?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2015

    Do please keep us posted! "What if…" is something we all dream about, for sure.

    Hugs,
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2015

    So on Friday my onc is calling me to talk about the trial.

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  • carol57
    carol57 Member Posts: 3,567
    edited July 2015

    Cookie, no going to bed Friday night until after you've given us an update here

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2015

    OK so, it is an inflammation blocking antibody. I didn't get the name.

    I don't qualify for the trial. I am right on the border of clinical/subclinical.

    Since they feel it is risky, they are only enrolling those with more of a difference between the arms.

    But that is interesting to think it is inflammation based.

    Onc says if it is eventually proven safe, he can prescribe it. I don't know how long that will be.

    Oh well. It was fun to be hopeful.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2015

    https://www.mskcc.org/blog/lymphedema-research-msk

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    Thanks for the link, Cookie! Sorry you couldn't take part in the trial. :(



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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2015

    Thanks, Cookie--that's really helpful. T-helper cell inhibitors, huh? Do you know if this will this be the first human trial of the drug? I'm really glad they're looking in this direction, but wish there was a better foundation of general lymph science--it's been a seriously neglected field for far too long. I'm sorry you don't qualify for this study--well, actually, I'm sorry you're disappointed but glad that the reason you don't qualify is that your LE is "borderline" and not more intractable than it is. (Still, when it's your own LE, it sure doesn't seem "borderline," does it?) We'll all be interested in following this study, for sure!

    Gentle hugs,
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2015

    yeah, there is nothing borderline about wearing a sleeve in 95 degree weather! :)

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  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2015


    Definitely not borderline, in my opinion,,,, I feel ya with wearing compression in 95 degree weather.

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  • kriserts
    kriserts Member Posts: 224
    edited August 2015

    hey Cookie, that link you provided didn't have any information about the drug they're testing. Can you point me in the right direction? I live in NYC and would be interested in perhaps volunteering for the trial. At least talking to them about what kind of patients they're looking for.

    In exchange I'll offer you this tidbit about a drug they're testing in Finnland, Lymfactin. Looks like it's going into trials very soon: http://globenewswire.com/news-release/2015/08/19/7...

    If that link doesn't work google "Interim report January 1-June 30, 2015: Financially stable - new investments in regenerative medicine: CDNF and Lymfactin." It's a business newswire, but you can glean some info from it.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2015

    it's an antibody, that is all I know about it.

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