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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 6 days ago | Replies (49)Comment receiving replies
Good morning, Mary. Your husband and you have some big decisions ahead! Wow, so much going on right now with insurance, travel, where to go…
One thought is to not let the current hematologist’s less than pleasant bedside manner factor in at this point. You want her expertise, not her friendship. AND, if you opt to stay for your husband’s transplant at NW, the transplant doctor and team will take over all the care so the hematologist will move to the background.
MD Anderson and Rush…that’s a dream team in the making! If travel isn’t a hinder for you then a 2nd opinion there is worth exploring.
And of course, I may be a teensy bit biased but there’s Mayo Clinic. Their transplant program and teams are world class. My Rochester team works closely with my home cancer clinic for routine blood work or anything that pops up that doesn’t require my returning to Rochester for treatment.
I’ll be reporting to the Mother Ship next week for my 5 year anniversary appointment!! That’s an exciting milestone!
Fantastic to hear about 3 potential matches. The pieces are all falling into place and the news is good about your husband’s response to the chemo. You’re right, the cleaner he is going into transplant, the better. There is also one more round of pre-conditioning chemo the week before transplant. That’s like ‘auto clean-power wash’ on my dishwasher. 😅 Squeaky clean marrow after that.
What a crazy day you two had. Phew…take a breather!! Let’s hope today is a little more chill! Thanks for the update and we’ll all keep fingers crossed for a good biopsy on the 9th! Hugs!
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Good morning Lori,
Yes it’s been a whirlwind couple of days! My emotions are all over the place.
You make a great point about our doctor not needing to be our friend. However I am also a bit frustrated by the communication with our primary hematologist. She is busy, has a huge practice, and isn’t warm and fuzzy to begin with. But we know she is a leading expert. So there’s that.
We are going to pursue a visit to MD Anderson. But thinking about all of that, being away from home by myself as a caregiver in a new city really makes me anxious. And thoughts about the aftercare post transplant is really starting to creep in and make me anxious. And then there’s the fact that we were advised at RUSH that there could be a change in direction in his treatment (clinical trial?) if they don’t clean up the cytogenetics in his blood.
So, although I’m trusting, or at least trying to trust and keep the faith, this will all be revealed to us soon enough I’m really struggling with all the uncertainty.
You see he has mutations and chromosome changes that are very difficult to treat and relapse is a real possibility after transplant. Thanks again for holding positive thoughts and encouraging me. Shared your email yesterday with my husband and he was very encouraged and impressed. Your kindness and commitment to all of us, complete strangers, is such a blessing.
Mary