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.

I have just Melissa’s post and find myself in a similar situation. 🙂 I completed a round of pretreatment ahead of a planned stem cell transplant to reduce my myeloblasts from 6% to under 5%. My myeloblasts actually went up to 7.1%. My doctors don't know why or how this could happen. Pretreatment was 5 daily infusions of decitabine and 400 mg of Veneclaxta daily for 28 days.

Any thoughts or ideas on places to research or ask will be much appreciated! I just started a second course of the same pretreatment. I am off to Memorial Sloan Kettering for a second opinion this afternoon. Thanks!

I am 76 and was diagnosed March 30, 2024 with AML.
I just had my 3rd bone marrow biopsy as the Dacogen/Venetaclax treatments are not getting me into remission. I expect the results may dictate a change in my treatment.
I will mention I have elected not to have a BMT. Has anyone above the age of 75 with AML elected to forego a BMT and if so what does your treatment routine consist of (drugs and timing)?

Hi @sonieaml. There are some mutations which may make AML a little more challenging. I read your previous a reply back from May that said you were in remission at the 2nd bone marrow biopsy. That’s frustrating news for you to find out that now you’re not in remission any longer.
Like you, I’m suspecting your hematologist/oncologist may make a changes in the current treatment plan.
Do you know what mutations are associated with your AML diagnosis?

Thank you Lori
Mutations are NPM1 and FLT3 plus one more.
Start my next round of treatment today 3/7. BMB results done last Wednesday due in next week or two.

Good morning, @sonieaml. The FLT3 mutation is a mutation that can be a challenge to wrestle into compliance. That was one of my mutations as well. Because of the FLT3 (pronounced as flit-3) my chemotherapy treatments were complimented with Midostaurin (RYDAPT) which is a drug targeting the FLT3 mutation.
What makes the FLT3 mutation difficult, the way it was explained to me, is basically that the mutation causes some of the cancer cells to evade chemotherapy by going ‘dormant’ during treatment only to emerge later and it can also allow some of the cells to learn ways to circumvent the chemo, making chemo less effective over time. The Midostaurin is an FLT3 inhibitor.
When you have your consult with your hematologist oncologist to discuss your BMB results you might want to ask what other treatment options are available if you’re not in remission. Ask about Midostaurin. It may not be appropriate for your case but since you have the FLT3 mutation it wouldn’t hurt to ask.
I’m here for you any time if you have questions or concerns. Will you let me know what you find out from your biopsy, please?

Hi Melissa, I live in Alabama and using the Drs at UAB to My first round of Decitabine/Venclexta did put me in remission but not long.
I am now on Cytarabine . My frustration is that I am not able to get the BMT due to having a liver transplant in 2020 at UAB.
I know my situation is totally different from your AML but I feel for you and understand when the tx is not working. I am due for another biopsy hoping I will get some good news.
I just want you to know I am thinking about you and your family we just have to stay positive.