AML successful treatment

Hi jalan00,
When I was first diagnosed 4+years ago, my bone marrow biopsy (BMB) showed I had IDH2 as well as TP53 mutation. I was considered at intermediate risk.
Just had another BMB and I continue in full remission. I am now on a Venetoclax pill and weekly injection of Inqovi. I was on a weekly pill of Inqovi but my neutrophils were not bouncing back well on the 100mg pill. My Mayo team says that their patients seem to do better on a weekly injection of Inqovi. The pill can only be swallowed whole but the injection is calibrated to my body weight and reduces my dose to less than 1/2 of the pill.
So much to learn as you and your father go through this. You are seeking all the information you can get - good for you and him!
Linda

Hello everyone. It's been 2 months since my father was diagnosed and he did 2 cycles of Azacitidine. No blood count recovery yet but it did bring his wbc from 27 to 1.73. Doctor said that my father looks strong enough now that we will be adding venetoclax on his 3rd cycle.

@lindagi @sonieaml may I ask what were your mutations when you were diagnosed? My dad was found negative on chromosomal aberrations using a PCR test and doctor said no mutations were found during bone marrow biopsy. I glad that there isn't any adverse risk mutations but the doctor said he's classified as intermediate risk.

The country where we live doesn't have NGS testing yet so we only rely on pcr tests and BMB.

@loribmt I also wanted to ask have you ever met anyone with the same circumstances?

Thank you

Oh golly, @jacklyn. I’m so sorry you’re having such a rough go of things lately. I was hoping, along with you, to see an improvement in your blood numbers returning to normal without transfusions. This has to be so concerning and frustrating for you and your doctors.

Having weekly transfusions is so disruptive to your daily activities. I know from experience what an impact this has on the psyche. Seems like with a snap of the fingers, the normalcy of life is being replaced by frequent trips to hospitals, doctor’s appointments and pharmacies. I’ll add some of my prayers along with yours for an added boost…to find stability in this disease so you can return to your treatments.

With excessively low platelets it’s important to be cautious avoiding nicks, cuts and bumps…all things I’m prone to anyway. I remember joking to my oncologist that “I guess I have to give up knife juggling now.” I thought he was going to pass out!! 😅 He didn’t know me well enough, at the time, to realize I was joking!
How are you feeling overall? Is the exhaustion overwhelming or can you be at least somewhat active?

I also was diagnosed with AML
About 6 months ago.
I had MDS for 9’yesrs ago
And was a watch and see. My counts were stable except my platelets. We decided my oncologist and to start
7+3 if ventalex and vidaza. I web into submission after the first cycle. I think I started 2nd and third cycle which I had to stop
Because all my counts went down. Like my platelets being. 10. I have been in the hospital
Every week for platelets transfusion and bags of red cell
Tamsfusin. All chemo
Infusions have stopped. This has Been since December the 15th. Iron’s know how long I can survive ytansfudions. They talk about iron overloadi ca
N’t go
There. Just pray my counts come up
Thanks for listening.

@lindagi would you please tell me if you take venetoclax daily ???

Lindagi so glad to read your success with Dacogen and Venclexta. I mirror just about all you posted!
I am on Dacogen and Venclexta drugs however mine is 1/2 down gradually from 5/7 after induction therapy. I elected to forego BMT when I was initially diagnosed in March 2024. I was 75 at the time. My weekly blood draws are now every other week and treatment is now every 6 weeks pushed out from every 5 weeks. I know I am blessed with the Hem/Onc team who oversee my treatments; they have me actively involved and give me options about treatment frequency based on my numbers and great results from special blood tests (MRD and BMB). I wish the very best to all who are living with AML! It IS something we can live with…significant improvement and outcomes over just a few years ago. The blessings continue in my life and I wish the same for everyone dealing with cancer!

That's awesome lindagi - thanks so much for sharing!

@lindagi Hello. Thank you for responding and for the info! I pray that you have continued good results with your treatment and hope and pray that my dad would also respond well.

Sorry for not replying immediately. My dad is only on azacitidine and finished his first cycle more than a week ago. He's still currently receiving transfusions and right now he is currently confined with doctor's checking the condition of his heart. It seems the treatment really lowered his blood counts and might be straining it a bit.

@jalan00
Hi,
I am doing very well with my AML treatment. I am almost 4 years in remission - lucky, lucky me! My doctors here at Mayo have allowed me to transition from monthly Dacogen infusions to an equivalent pill called Inovi. Once a week I now take a Venetoclax pill and the next day an Inovi pill. I continue to get my weekly blood work and to see one of my clinical team monthly. Every 6 months I have a bone marrow biopsy. Next one is in a few weeks and will show more data but there is no indication to expect a change.
I have been very fortunate to have had no dibilitating side effects. (No colds, no Covid, no flu, no hospitalizations, etc) My neutrophil counts have been the biggest concern but have been manageable. I complain about fatigue but so do many people my age (I am now 81)! I think the meds have contributed to my dry and sensitive skin, as well as my thinning hair. Small nuisances compared to another AML patient I know who had many complicating diagnoses.
I think starting treatment for AML is very scarey both for the patient and the family. I think it is great to get as much information as possible about what to watch out for. I still go to my monthly appointments with my clinical team with a list of questions, including ones about what the most recent research shows about AML treatment. Good information helps me to feel in better control and more able to fight this disease. Your father is lucky to have you in his corner.

Hello @lindagi . I just saw your post. Congratulations and I pray that my dad would also have good results 🙏. He was just diagnosed this month and just finished his first cycle of Azacitidine shots.

I wanted to ask how are you and is there anything we have to look out for/side effects/or anything that could help minimize any possible discomfort?

Thank you