Dacogen/Venclexta not working?

@mriopka. Welcome to Mayo Connect, Melissa. There are several of us who have undergone treatment for AML and had bone marrow transplants…that was 4 years ago and I am now in a durable remission and feeling like nothing ever happened. @alive @edb1123 @kt2013 and others will be happy to be your support group so that you won’t feel so alone in this journey. I had to laugh that you mentioned not being good at brevity. I’m never economical with words either so I’m betting you and I will have some lengthy discussions. ☺️

I was 65 at the time of my diagnosis of AML. It can be a very aggressive and difficult blood cancer to treat. If there are acquired mutations such as FLT3 or others it can make the disease even more challenging to remain in remission.
I had the standard 7+3 induction chemo. It required being in the hospital for 5 weeks initially. That’s maybe why your doctors tried the less aggressive route with Dacogen/Venclexta so that you could remain home. It’s also a wonderful alternative for older patients for whom a rigorous chemo treatment and a transplant isn’t an option. But you may need to go ‘full chemo’ on this to get the leukemia under control.

AML mutated cells have the ability to go dormant to evade chemo. They can also adapt to chemo and subsequent treatments may find fewer cells responding. So by getting aggressive treatment, you may stand a better chance at getting into remission. I did after the first round. I still had 2 more rounds after that on a monthly basis that required another week in the hospital for what are called Consolidation chemo rounds.

Even at 65 I did ok with the chemo. Of course it wasn’t a walk in the park, because there is nausea, the possibility of hair loss (which I did), fatigue, weakness and other side effects. It’s not constant but waxes and wanes during the months of chemo. But, the goal for you is have a second chance at life and to still be the mom (gorgeous, I might add) to those adorable children! My daughter was 35 at the time and I know how awful I felt at the prospect of her being without a mum. Your feelings are compounded with having younger kiddos. But there is hope with this disease! And your kids will see you as some kind of superwoman when you overcome this! ☺️. It will feel overwhelming if you look at the entire scope of what’s happening. So just each day at a time and you’re going to fly right through this!

It sounds like you have so much going on in your life with caring for your mom, raising your children and working full time. Is your mom in assisted living or living with you?
I’m going to be honest in telling you that this isn’t going to be easy. You’re not going to feel like working outside the home and in fact, while your blood counts get low as the cancer cells are being attacked, there will be days where you won’t have the energy to get dressed or showered. They will rebound and so will you. But the focus is on recovery. Do you have any family, husband, siblings, aunties, friends who can help watch your children and take over some of the help you’re going to need?

@mriopka, I thought I'd check in. How are you doing?

@mriopka, It’s been a month since you wrote into the forum about your diagnosis with AML. This has to be a particularly upsetting for you with raising a young family.
From what you’ve written it sounds like you have a wonderful cancer team working with you to find answers. I hope you’re doing ok. If you need moral support there are several of us @alive @edb1123 @kt2013 and others who have had AML with bone marrow transplants and would love to help you along this path.

Have there been any changes with your medications where you’re seeing some improvement in blood numbers? Have you learned anymore about a potential bone marrow transplant?

@mriopka I was hospitalized immediately after diagnosis to undergo 7+3 chemo, then MEC chemo, and finally Venclexta+Vidaza before I got into remission because I had refractory AML. I then had consolidation chemo and a bone marrow transplant with an unrelated donor from the registry, a perfect match! That was 3 years ago at age 60 and I’m doing great! As Lori said, it wasn’t easy - nausea, weakness, loss of hair, fatigue. I also got a form of pneumonia 5 months later that put me in the ICU for about 15 days. But now I’m living a normal, active life! Don’t be afraid to ask for help from friends and family. Most people will be happy to help if you tell them what you need! Let me know if I can be of any assistance or support.