Hi @loribmt !
Great to hear from you! Your positive energy always cheers me up as I follow your outreach threads to others like us.

Today is Day 159, and the completion of cycle 3 of the Aza/Ven monthly maintenance treatment. All his routine labs are stable and he has gained a couple pounds. He developed mouth thrush but it seems to be managed well with Nystatin mouth rinse. He is being tapered off Tacro and should be completely off by day 180.
The CBD gummies did not work for him, as they made him feel weird. The nausea worsens close to the week of maintenance therapy, so he has to take Reglan more during those weeks. He actually had been doing well without it for a couple weeks that he forgot to take it the first day of his treatment last cycle and that was a mistake. 🤦🏻‍♀️
We are learning how “experimental” the maintenance therapy phase is. Much remains a mystery about the best course of treatment following BMT for those with high risk AML. Studies are lacking for definitive treatment protocols and each cancer center has a unique approach. We are going with MD Anderson’s recommended dosage and duration of Aza/Ven and our Northwestern doctor has also weighed in and agrees. They recommend 2 years of this treatment, assuming clean biopsies along the way. That’s our next goal line and it feels far away. But hey, we are closing in on 6 months since BMT. I actually have to clarify with them if they mean he should receive these treatments until his 2 year BMT anniversary, or 2 years of maintenance treatment total. I also wonder about the cumulative effect of these drugs. But that’s anxiety I don’t need and can’t control.
We are hoping for a positive biopsy result in early December. 🙏
And…another hope we have is to get away to Florida in February. Our NW doc referred us to a doc at Moffitt Cancer Center where he could receive the outpatient treatment (5 consecutive days of IV Aza) and be able to enjoy the warmth and sunshine in a rental home we have reserved. We need the green light from his stem cell doc too, so we are making plans and holding hope.
I must thank God 40 times a day for another day. So even though we are allowing ourselves to look out into the future a little bit, it’s really today that counts. One at a time.

Hope you are feeling good and getting excited for the coming holidays.

Thanks for checking in Lori.