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

They are starting me on that combination. I am 73 & diagnosed AML/MDS. Round 1 was Decitabine. I’m now on Round 2 Decitabine and Venetoclax. I’m tolerating it very well. The only issue is dry mouth (biotene rinse is very helpful) and constipation (daily MiraLAX and Colace). Occasionally I need milk of magnesium for it.

One more round of combo chemo and thereafter a bone marrow biopsy. My initial BMB had blasts 20-25% and I have 8 gene mutations.

But I remain quite hopeful and positive that I’ll get to a stem cell transplant! I am very diligent about avoiding groups of people, masking, hand washing, brushing teeth, avoiding any pets, no open windows etc. I’m in the family home, just my brother and me. Siblings set up the large master bedroom & bath like a mini studio apartment - so I have a little refrigerator & microwave, as well as my computer, printer and TV. Not bad !

I hope this helps you, Nancy

@nbiagini Welcome to Connect, Nancy. The success of the combination of Decitabine and Venetoclax has really been encouraging for so many AML patients. Years ago we didn’t have those options, so this has been wonderful game changer! I’m happy to hear you’re tolerating the drugs well.

I’m marveling at comments about your living arrangements and your diligence in protecting yourself to avoid illness and infections. All of this puts you at the head of the class when you get to the point of having the stem cell transplant. All of these things come into play during recovery. So you’ll be able to return right back to your normal environment. Kudos to you!

You mentioned your first BMT showed blasts of 20-25%. Have you had any followup blood tests to show how well the first round of chemo worked in reducing your blasts? Or will a BMB be taken after this 2nd round?

@loribmt I have at least weekly blood draws. My platelets are the weak spot. They added venetaclox to my Decitabine when they realized that my platelets were causing a big problem. I live close to Stanford Hospital (so lucky) but I get my chemo at my local hospital nearby. My local oncologist is working hand-in-hand with Dr Peter Greenberg at Stanford. My platelets, after an infusion, get as high as 100. Two days later they’re down to 82. Two days after that down to 51. So they are falling fast, and white blood cells are the second worst problem. Before I finish with this round of combo chemo, which is five days in a row, I’m probably going to need another unit of platelets, maybe two, that will make something like six or seven units of platelets since I was diagnosed at the end of June, 2026.

I tried to learn as much as I can about this cancer and the process. As a result, I also keep a close watch on my blood test results. The rest of my body, liver, kidneys, organs, are normal and have stayed normal. I did have a heart attack, a small one, in February 2025 but it’s not causing a problem at all. My Cardiologist told me forget about your heart. You’re fine. Take care of the cancer. So that’s what I’m doing.

I’m told after round three of combo chemo, which will start September 28, then they’ll do another bone marrow biopsy. Not before. My doctor also tells me when I leave the hospital for this round, which is a five day stay, I will continue to take the (oral) venetaclox for a total of 21 days. I understand venetoclax is an inhibitor, so the hopes are that that will help and getting rid of the cancer in a way that bring my blasts down to 0%.

The bone marrow biopsy will tell the final story about whether or not I can go for stem cell transplant.