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Anyone used Axatilimab iv infusions for chronic GVHD?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: May 31 12:42pm | Replies (3)
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Hi Lori,
You are so kind to check in. I start my axatilimab treatments in June and hoping they will help. I will look at the links you sent - thank you.

Although my issues (oral and vaginal GVHD) are not life threatening (which I’m thankful for), they greatly impact my quality of life. One big thing I’m realizing is how important it is to be our own advocates- and to read the doctors notes - because if I had I would have realized that a doctor incorrectly diagnosed my vaginal GVHD as simply menopause which delayed proper treatment for months. That’s just one example- lol once I get a list of what helps I intend to write in to help others but right now it’s not clear what if anything is helping.

Thanks again.

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Replies to "Hi Lori, You are so kind to check in. I start my axatilimab treatments in June..."
Lori, Volunteer Mentor | @loribmt | May 31 12:42pm

@deb913 Oh my gosh, Debbie, the delay in treatment for the early gvhd is really sad! I’m so sorry symptoms progressed as far as they did before the ‘ah ha’ moment! From my own experience I know gvhd can come on very subtly but usually our transplant teams pick up on things pretty quickly. My most prevalent issues were atypical, centering on my spinal cord. Those symptoms were so subtle until they were cataclysmic. But usually skin, vaginal, oral and digestive tract issues are not difficult to diagnose as gvhd by the transplant teams. Beyond the transplant world communicating with doctors who aren't familiar with GVHD is frustrating!
We absolutely have to be our own advocates. Especially once we’re back in general population receiving medical care.
Was this your transplant team doctor that missed the early gvhd?

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