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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)Comment receiving replies
Hi Lori,
We are at day 85! Met with the new hematologist yesterday and she recommended Aza/Ven maintenance going forward. He continues to have the Tacrolimus tapered and is doing well. Looks good, better energy and all labs are stable. The third chimerism number is at 92 as of a couple weeks ago. So he is in a strong position as we move into the next has of treatment. The maintenance is being recommended because he had “high risk” AML. It’s a disconcerting reminder, but our reality.
I must say, I felt quite emotional all day yesterday as I see again, our reality, reflected back to us via this new member of our team. She was warm, hopeful and comforting. She’s even going to confer with the MD Anderson doc we saw in April about the maintenance chemo dosage because there was a slight difference between what they recommended and what she usually prescribes. It’s just the relapse risk that continues to lurk. Guess I have been in transplant mode and keeping him healthy, grateful for his progress. Now we are onto another path, even as he will continue to be seen by both the stem cell team and the hematology team.
I think you mentioned you know others who are on maintenance chemo and are doing well. Any insights you have to share about their progress would be appreciated.
With much gratitude for you, wishing you a beautiful day.
Replies to "Hi Lori, We are at day 85! Met with the new hematologist yesterday and she recommended..."
Hi Mary! Dane is on the homestretch now with 14 days remaining before that elusive 100 day mark! Didn’t it seem like forever away when he was at Day 0?
Day by day, the slow recovery process continues. It can’t be rushed but you see incremental changes daily as the new stem cells/new immune system start taking over their new home to keep Dane safe. He’s growing stronger with more stamina, appetite is improving and mentally he’ll feel more confident about his future.
You’re right, he is entering a new phase beyond just the basic survival mode of the first 3 months. He’s getting on with the rest of his life. He may have days of euphoria where he feels invincible and then days of doubt. It happens to all of us! At some point, he’ll actually get past the daily thoughts about what he went through. If it wasn’t for my daily discussions with members on Connect, I’m pretty sure I wouldn’t even be thinking about my transplant much anymore. I feel perfectly normal. Though subconsciously I’m cautious about illness prevention but that’s in my wheelhouse anyway.
It can take months to a year or more for the new immune system to mature. Right now, consider his immune system to be similar to your new little grandson’s! He was born almost the same time as Dane’s rebirth! ☺️
Because Dane was in a high risk category for AML, his doctor wants to ensure that he doesn’t have a relapse. AML is tricky. Some particular mutated cells can be elusive. They’ve been known to evade chemo by going dormant, then hiding out, only to reemerge at a later date. That’s why a new immune system was ‘installed’. Dane’s old immune system no longer recognized the cancer cells associated with AML. If there be a reemergence of the cancer cells, his new immune system should recognize those. That’s considered a Graft Vs Tumor response and his new cells should attack and eradicate the cancer. Because of the tenacity of some of the cells, that’s where maintenance therapy can come into play.
There have been great advances in targeted drug therapy for some of these mutations such as the FLT3 mutation. During my induction/consolidation treatments for AML, I was also taking the abrogating drug Midostaurin to target the FLT3 mutation. Other drugs, such as the combination Aza/Ven are given post transplant as a belts and suspenders measure to help prevent relapse of AML depending on the mutations.
I know it’s disappointing to hear there may be some post transplant maintenance therapy. But it’s been shown to be effective in improving relapse free survival and it may only be while the risk for relapse is a potential, not forever. From conversations with my transplant doctor, if there isn’t a relapse within the first 22 months, statistically the probability drops appreciably. Checking in with my friend who was on Aza/Ven, her maintenance was for only a year. She’s 5+ years post too and healthy! But each person’s case is different depending on background and mutations so it can be dangerous to compare with others. Just like infants…no two are alike and comparison can lead to misgivings about development, right? ☺️
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One more question about Covid and Flu vaccinations….
My husband’s stem cell doctor said he can get both vaccines anytime. This is relevant with the surge in Covid cases happening currently.
As a reminder he is at day +85. The doctor indicated that there is a 3-5% chance of either vaccine inducing GVHD but feels it is worth the benefit of the vaccination. We are surprised he is allowed to get these vaccinations so soon after transplant. Has anyone else received their Covid or Flu vaccines during the first months after transplant?