AML, age 78, taking Decetabine/ Venetoclax, no transplant

Having 2 clean biopsies clear of blasts is a really encouraging for your dad! Hopefully being able to take a break for a month or so will allow your dad’s body recover and see his blood numbers increase. I had a different treatment for my AML. The first month I rebounded quickly. But each subsequent month my body was a little slower to recover after the week of chemo. Once I was finished with treatment regeneration happed fairly quickly. But it worked to kill the cancer cells, which was the goal.

Oh gosh, that’s really discouraging about the Flomax no longer working for your dad. My husband had a similar issue after being on it for a while. His doctor switched him from Flomax to Tamsulosin and Finasteride. That has really helped him sleep through the night! Especially the Tamsulosin. It might be worth mentioning to your dad so he can discuss it with his doctor. Not getting any sleep is awful. Especially with his ongoing chemo treatments…he will naturally be tired! Poor guy!

Wishing your dad all the best! I’d like to follow him along so let me know how he’s doing, ok?

Hi Lori, I am new here and thankful for all you do. My husband who was initially diagnosed with MDS late last year was on Vidaza which showed no improvement after 5 cycles with 10%+ blasts as shown in his recent bone marrow biopsy. He had been recently switched to the Decitabine/Venetoclax protocol going on his 2nd cycle next week. Although probably too early to say, apart from fatigue he shows no other side effects, maintains good appetite and reasonable sleep time. However he has needed transfusions last week (and had one last month as well) as his blood counts have been seriously low at 0.40 WBC/2.08 RBC/11 Platelets which his doctors warned us would get worse before they get better. It is encouraging to hear IamHisDaughter's Dad responding favorably to the same treatment and wish him recovery. My husband is also diagnosed with mid-stage prostate cancer which he received Leuprolide/Eligard. Although being treated out of the VA Hospital, both his oncologist and hematologist work out of Moffitt Cancer Center in Tampa, FL.

Welcome, @terdor! MDS treatments aren’t “one size fits all” because there are variables with each person. I’m sorry your husband didn’t respond well to the Vidaza alone. The Decitabine/Venetoclax can have positive results as you’ve seen with some of the posts here in this discussion. So we’ll be optimistic that this will be the charm for your husband. ☺️

His doctor is right, the blood numbers may get lower before they get better with this treatment. I know that can feel like a setback or huge disappointment. But it’s vitally important to clear out the blast cells. While there are only 10% in his circulating blood, (there shouldn’t really be any) that means there are much more in his bone marrow, interfering with healthy blood cell production. So once those blast cells (immature, defective white blood cells) are killed off with the chemo, your husband’s marrow will have more of an opportunity to help replenish his body with healthy cells. That’s the goal.

So hang in there! Blood and platelet infusions may help him to feel better and keep his numbers reasonable in the meantime.
How has your husband been doing with his treatment for prostate cancer?

Thank you for your much needed encouragement. He has not noticed any difference since his prostate treatment was administered over a month ago. He is scheduled to get another shot in 6 months. Will keep you posted. Again, thank you for your support.