Roswell Park Cancer Center, Buffalo, NY

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  • skyfly
    skyfly Member Posts: 85
    edited November 2018

    I hope she does! Even though I understand hers was a moonshot outcome, I still think of her as a shining beacon of hope. It’s a big thing going from 0 to 1 in my head—now hopefully they can reproduce and refine this therapy, and fast!

    I wonder what the FDA’s role in all this would be. It doesn’t seem like a new drug as much as a new treatment method.

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  • bevin
    bevin Member Posts: 1,902
    edited November 2018

    blainejennifer, you are right in my backyard. I live in Buffalo. Its a great city, and Roswell is top notch. PM if there is anything I cam help with.

    Bevin

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited November 2018

    Bevin,

    Thank you so much. Right now, Roswell isn't offering any immunotherapy trials for my kind of breast cancer. There was one, but I was the wrong kind of HLA serotype.

    I was very impressed with the facility, but there were several miscommunications among the breast cancer team, making a simple blood test result take two weeks. Two weeks that I was waiting on trial entry, on chemo washout, and in pain. I expect that this is an anomaly.

    I stayed at Kevin's Guesthouse, and it was amazing. $25 a night for each adult, breakfast and dinner, and beautiful rooms. The bathrooms are shared, but they were very clean. I might worry if I were severely immuno-compromised, but I would worry anywhere then, wouldn't I?

    You are so lucky to have them close. I love the standard of care the I have received here in tinytown, but we simply don't have the systems and equipment available that Roswell does.


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  • Fiddleman
    Fiddleman Member Posts: 59
    edited November 2018

    Hi Jamie,

    Best of luck with the trial and results. You and Jennifer are blazing a trail that I hope will be more easily navigable for the rest of us. I'm now Stage IV with mets in my lung and chest cavity. Am currently on hormone therapy in addition to Pablociclib, which interrupts the cell cycle before DNA can replicate. I am tolerating it well with minimal side effects so far. Though, since Tamoxifen didn't work, I'll be sitting on pins and needles until my first 3 month scan. So I am a little anxious that these meds may not be effective also. Should that happen I'll also be looking at immunotherapy trials. Glad to hear about NIH as a possibility should I flunk out of Roswell. Just hoping the IM therapy will be up and running before I get kicked out. At least there seems to be more MBC trials in the works.

    Barry

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