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No Evidence of Disease vs. Minimum Residual Disease AML

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 21 1:20pm | Replies (14)
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@loribmt

Hi Sally, I had been recommended a maintenance drug (sorafenib) but ended up actually not taking it. I had developed another issue that took center stage and our focus was on that.

How it was explained to me with the maintenance drug was like this: Having the transplant, I’d already gotten an A in the class. The maintenance drug would give me an A+…extra reassurance that the job is good!
It’s like a belts and suspenders maneuver to keep any cancer cells at bay in case they eluded the treatment somehow. If they’re going to reemerge there is a small window of about 18 months or so. It can vary depending on the mutations we had which could impact the potential for relapse. If we can make it past 22 months without a relapse, statistically, the odds of that happening drop appreciably. So the maintenance drug usually isn’t forever.

I know that @mary612’s husband Dane is on maintenance meds, he just reached his 1 year anniversary. Not sure what he’s taking though. Also, @dwolden’s husband, David is or was taking maintenance meds. It’s not unusual for this to happen.

You’re just past the 100 day mark! Whoo whoo! Time for back flips and cartwheels! Feels pretty good huh? When do you get to go home?

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Replies to "Hi Sally, I had been recommended a maintenance drug (sorafenib) but ended up actually not taking..."
sally66 | @sally66 | Jun 21 8:21am

Good morning,
Day +107 today. They sent me home on day 39 which was an unexpected blessing!!
My last biopsy was pretty good other than MRD found microscopically. I'm trying not to be discouraged having to take these chemo pills but I know they will knock it out.
I'm a big faith girl and I know my God has His hand on me. Another biopsy in a month. Otherwise things have gone well. No gvhd! Praise the Lord!💜

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mary612 | @mary612 | Jun 21 10:48am

Hi @sally66
Congrats on passing the 100 day mark! That’s a big milestone to cross and it sounds like you are doing well too!!

My husband (65yo) had high risk AML with rare genetic mutations, secondary to previous chemotherapy for a different cancer, treated 5 years prior. He had a successful allogeneic stem cell transplant last June. Several medical opinions recommended up to 24 monthly maintenance doses of Azacitadine and Venetoclax, which he started about 90 days after transplant. He has completed 10 monthly treatments.
The latest tests show no evidence of disease. He doesn’t love the treatment weeks because he gets nauseous and tired, but he is able to function and Reglan helps a lot to keep him eating whenever he doesn’t feel well. His labs all remain stable during that time too so he appears to be tolerating it fairly well. He is starting to complain about some brain fog that we will be discussing with his doc next month. Perhaps she will consider allowing an extra week break between treatments?
We understand there is not a lot of data from medical studies supporting exact dosages and outcomes of maintenance therapy but they know enough with the little data they have that maintenance therapy can reduce the risk of relapse.
Wishing you a return of your strength, snd sending up prayers for continued healing. I too believe God has his hand on my shoulder and is guiding us through this life. Thankful for another day each morning!

Mary

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