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Anyone go through duv/romi treatment before an allogenic BMT?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 18 6:21pm | Replies (39)Comment receiving replies
@loribmt
Lori,
Can I get the book recommendation and I will order it as I start the process next week. In one of the other threads I just sent you a question about what your chemo experience was like.
Things have gone really well in preparing:
* in less than 3 months the Jakafi took my spleen from 23.7 cm to 17 cm
* I have been able to gain weight as my transplant doctor told me I needed to
* even though my RBC is 3.5 I have maintained energy and even just today rode my 3 horses a total of 15 miles
I have looked at the lists of things to bring and we have started packing, but if you have any last minute suggestions they would be appreciated.
I also wonder how long your engraftment took.
Thanks,
Lorie
Replies to "@loribmt Lori, Can I get the book recommendation and I will order it as I start..."
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Hi @lorieliebrock I just replied to your other comment. It’s way longer than intended. LOL. But you asked. Here’s the link:
https://connect.mayoclinic.org/comment/1601218/
You’ve had some excellent success with the Jakafi! Wonderful news that your spleen has gone down considerably! You’re still exercising and gaining weight, which is terrific. That will do well for you for the next couple of months! I’m sorry you’ll be missing your horses for a while. But those velvet noses will be waiting for your return!
Regarding the books. Honestly, I really think it’s better to wait until after your transplant. At least in my case, the books and information was much more meaningful and made more sense when I could pair it with my experience. Beforehand it’s difficult to relate to what you’re reading. So I will defer just a little while longer. ☺️
My engraftment was Day 14!!