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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 3 days ago | Replies (590)
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@mary612

Hi all!
Checking in and hoping @loribmt you had an excellent doctor visit recently. 🙏

Happy to hear the updates from several others on this thread. ‘One day at a time’ soldiers we all are. 😊

Today is the 4 month anniversary of rebirth for my husband.
He is stable after one cycle of post SCT maintenance treatment, except for the new DVT in his jugular vein in his neck that showed up a couple weeks ago. He was on Elequis blood thinner when it happened. They immediately switched him to 2 injections of lovanox every day. It’s painful and will take quite some time to resolve. The docs don’t know what caused it other than he had his tunnel catheter removed from his chest (same side as the DVT) a couple weeks prior. This is his third blood clot since being diagnosed in January this year. He has no history of clotting. He also can’t quite start gaining weight yet. He is eating but the monthly maintenance chemo doesn’t do him
any favors because of the nausea. He was prescribed Marinol, a marijuana derivative. But that made him feel a bit high and he didn’t like the feeling. 😮
And so we go, living one day, one step at a time. Next BMB will be in Nov after another cycle of maintenance chemo next week.

The leukemia doc has suggested she may start him on Onureg only starting next month (as opposed to Azacitadine plus veneticlax which he is taking now). My understanding was a that maintenance chemo for high risk AML is not a one size fits all and is very much up to each individual and their medical team to determine best treatment as tolerated. More unknown territory. More uncertainty. I’m keeping the faith.

Hope everyone sees some sunshine and fall colors today.

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Replies to "Hi all! Checking in and hoping @loribmt you had an excellent doctor visit recently. 🙏 Happy..."
Lori, Volunteer Mentor | @loribmt | Oct 12 9:35am

Hi @mary612. I’d meant to check in with you and Dane this weekend so I’m thrilled to see an update! 4 months already? My gosh, time just seems to be flying at the speed of life! How’s your little grandson doing? He’s 4 months too, just like his grandpop!

Wow, I’m sorry to hear about the blood clot. That was unexpected and I’m sure pretty frightening…a complication he didn’t need! The food/nausea balancing act is a tough one. That was always my bugaboo too. No appetite, the thought of food was so off-putting. If Dane is not comfortable with the Marinol I wonder if he could opt for some cbd/thc gummies from a reputable company. Might be something to ask his transplant doctor if it’s ok for him to try. They weren’t available when I could have used them. But a person whom I’m mentoring locally, while going through her AML treatments, is using gummies. While she still has some nausea she is able to eat and maintain her weight through chemo! That’s a huge plus for keeping healthy. Anyway, thought I’d toss that information out for you. Might not be allowed because of potential interference with meds.

Thanks for asking…My 5+ year follow-up was super and my leash now got lengthened to 1 year intervals with 6 mo blood work! That’s a huge leap forward. I’d been at 6 month returns to Mayo for follow-ups for quite some time. And blood work every 2-3 months. So this was a lovely graduation for me and a great chat with my transplant doctor. We both felt I was ready for this interval now.

I also had a really special treat of being able to meet in person with @dwolden and her husband who are at Mayo while he undergoes his recovery from a recent BMT there. It’s rare that we mentors have that opportunity. So all in all, my trip to the Mother Ship in Rochester was positive and very fulfilling. We left Rochester and headed up to Minneapolis to spend 4 days with our daughter. It was whirlwind week filled with happy surprises along the way. But also, it served as a reminder of how incredibly fortunate I am, as we all are, to have received a second chance at life. Without the BMT, I’d have been dust for over 4+ years already.
The autumn colors are glorious right now. Here are 2 pics I took yesterday! Mother Nature’s Crayola Box. She brought out the 120 count crayon box this year! LOL.

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