Acute Myeloid Leukemia questions about treatment & survival

Welcome to Connect, @rob21974 Congratulations to your family member for having reached remission with AML…twice! That’s an encouragement achievement. However AML can be a bit of a challenge to stay in remission. The simplified version: some of the mutations which drive AML can actually cause the cancer cells to elude chemo, basically going dormant through treatment only to reemerge (relapse) when the cells feel the coast is clear. Quite often there may be followup maintenance chemo to keep a person in remission if there is no bone marrow transplant.

I’m not sure what chemo your family member received, but if a stem cell transplant isn’t an option, then there are drugs such as Decetabine, Venetoclax, Vidaza, among others which are better tolerated for older individuals. As we age, our bodies aren’t able to process aggressive or intensive chemo as efficiently; drugs can be rough on the organs. There have been several lower intensity drugs developed for aging patients.
The FDA recently approved a completely oral regimen of Venetoclax + Inqovi for AML patients over 70.

There is a difference between MRD positive and negative. MRD refers to Minimal Residual Disease. If your family member’s MRD is positive, that indicates the presence of residual leukemia cells after treatment, which is associated with a higher risk of relapse. Conversely, MRD negativity suggests a better prognosis and lower likelihood of relapse.

If MRD positive, I’d expect your family member’s doctor to offer some form of long-term followup treatment.
We have several members with AML who are having transplants. I think some of the conversations might be helpful for you. Here is one posted by @lindagi a few years ago.
~AML, age 78, taking Decetabine/ Venetoclax, no transplant
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
What has your family member’s doctor suggested?

75 year old with aml. Have been in remission for a year..everyone is different and survival rate depends on alot of factors..my doctor says three years but I hope she is wrong..bless your family member and all of us on this journey....

I am taking completely oral regimen of Venetoclax + Inqovi for AML for 5 days and then 23 day off , 85 years .
I had to change doctors and go out of state for this oral regimen
I was very sick with my other chemo . I lost 40 lbs When I left for out of state treatment I was very weak..I was out of state for 3 months , came back healthy Doctor was amazed . I was walking going out to restaurants, shopping for clothes I lost weigh, I finally gained back 20 lbs. they gave me infusions, Neupogen injection to keep me healthy. life was very good I did experience fatigue.
My Doctor is following the oral regimen, will not follow up on blood works ,finally gave me Neupogen injection on Aug 17, first time since June 4,before he gave me peg felgrastim once a month, I was told my count would go up gradually over the month they didn't I knew why they crashed he started cycle at 23 platelets I told him they would crash to his face. Later asked him to be polite ,why it did not work as my counts kept dropping on blood test,he had no answer .That kind of injection isn't for a patient when you know the Neutrophil will drop dramatically .I said before dropped 4 for two blood counts, Neutrophil dropped to 0.2 I started my THIRD cycle Platelets 29, on my SECOND cycle he delayed for two weeks, they were 29 considered too low. waiting for my platelets count to go up on , instead they dropped Platelets 23 he started SECOND cycle. he says infusion are only an artificial boost only last 1/2 days. I don't care I just want to be healthy and not delay my treatment. My out of state doctor gave me infusions to keep me healthy and not delay treatment. Not looking forward to the friction called demanding infusions, his threshold has changed from 16 to 20 or lower for infusion, Nuetrophil has dropped from 1 to 0.5 his notes says 1 when I called because was 0.5 I was told you only give Peg felgrastim once a month and it would go up gradually .I don't understand his reluctance to give platelets infusion, and Neupogen injections. I am not looking forward when I finish and I have to call and tell him I want Neupogen injection that raises neutrophil immediately and should be given as needed to at t kept counts as he previously said at 1 to keep me healthy during my treatment and say I don't want that peg felgrastim It is not a healthy relationship between myself and doctor I have tried to switch doctors , On last appointment , said you don't want to see me anymore , made my next appointment for 4 weeks with NP nurse, I have only seen him 4 times since June 4, I had to ask to ask him! It was a awkward I still am trying to switch to another doctor,
I am still alive almost 9 months after my Doctor told me my treatment no working arrange for hospice. I have to see him say he suspects cancer is coming back because of low counts I said it was because counts were so low when he I started cycles , to be polite I didn't say you could have given me infusion and then counts would not dropped so low. It is so obvious to me what he has to do he wont do it. I feel like a broken record!

@sheridan2026 Your story of your relationship with your oncologist is so disheartening. It’s difficult to have a level of confidence in your treatment when you feel your doctor is being dismissive. Comparing your current treatment for AML with your prior and very positive, out-of-state provider is showing two very different approaches. I’m sorry you’re having to go through this! No wonder you’d like to change doctors. Your current doctor sounds a bit prickly and not very willing to work with you to gain your trust.

If I may though, from my own experience with AML, blood numbers can drop considerable through each cycle, taking longer to rebound with subsequent cycles. Pegfilgrastim (Neulasta) is given once per month immediately following a chemo cycle. It’s longer lasting than the Neupogen which can be given daily. Doctors often opt Neulasta for a prolonged effect of increasing the neutorphils.

In the past though, you have had a better experience in your treatment with daily Neupogen injections. It would be nice if your current doctor would at least explain to you the reasoning behind opting for Neulasta over Neupogen. I see your next appointment is with his NP. Nurse practitioners are an integral part of our oncology teams and usually have more time available to answer questions. So you might want to chat with the NP about weighing these meds against the other. I know, it shouldn’t have to be this way…like pulling teeth to get good medical care. You’d like to be heard on your own merit! But it wouldn’t hurt to have a notebook with your questions to ask.

Regarding platelets, I don’t know if you’ll find this helpful or not but the American Society of Clinical Oncology (ASCO) guidelines emphasize careful patient selection to avoid unnecessary transfusions, ensuring that only those most likely to benefit receive them. Platelet transfusions are indicated for patients with a platelet count below 10,000/μL or those with higher counts experiencing active bleeding.

Your doctor is following the guidelines for patient platelet transfusions. Again, from my own AML experience, I only received platelets if my level was nearing 10,000, usually mid-cycle.

As we age our bodies have a more difficult time processing the medications. Fortunately the newer treatments for AML are of a lesser intensity and better tolerated by the body. But each round can still take a little more time to recover from.
I see you recently started Inqovi along with Venectoclax. This is one of the newer protocol that has been quite successful in reducing blast counts and bringing patients to remission. Years ago, this was not possible! So I hope you can strike a good accord with your doctor. At least from my perspective, you are getting up to date medical care with your doctor following current protocol.

What was your latest blast count? How’s your hemoglobin level?

Does anyone know if you can take a break from venetoclax and vidaza if your labs are normal...like a month off for body to recover..