Acute myeloid leukemia (AML): What can I expect?

Hi, Jan. Congratulations on completing this part of your AML treatment! The big binder can be very intimidating to read, I agree. But I would encourage you to keep it handy, so that if you think of something, you can look up the answer. Your transplant team will be the experts who will walk along with you on this journey. Ask them anything you have questions about. Keep their phone numbers and contact information handy.
I just celebrated my 10 year transplant anniversary on 6/20/23. While I would prefer to never have had this experience, AML taught me to slow down and treasure every day with an attitude of gratitude. I will keep you in thought and prayer as you continue on your journey.

That’s such a great news! I know it’s both exciting and scary. I will be celebrating my transplant anniversary on Aug 4. It will be seven years for me. I don’t have any regrets about it and am thankful to be cancer free! I will be praying for you!

I also remember getting a folder -so much information and everything was new to me. It takes a while to process and understand it. Don’t feel like you are studying for a test when you read it. It will be your reference manual, and you will go back to certain sections when need arises. I like to highlight important points, so it’s easier to find it later.

Hospital are requiring to provide this information to patients because this is a serious and life changing treatment.

Thank you!!! Through the registry I was very fortunate to have three 100% matches. My transplant team chose a 26 year old female from Europe. That is all the information they would give me. Since I am in Illinois and the hospital is in Wisconsin, we will relocate for approx. 90 days. It is so wonderful having your support. You are great!! God Bless you all.
Jan

My donor was found in Germany also - a young college student who registered to donate when he was 16 and a family friend was needing a stem cell donor. I became the beneficiary of this man’s generosity. He will be coming to the US for the third time with his parents to visit us.

It’s wonderful you’ve been able to meet with your donor! That must have been an incredible first meeting!! 💕
My donor was a 20 year old male from the US and after repeated attempts to initiate contact he chooses to remain anonymous. I’d really love to meet this young man who would be 24 now. I sent 2 thank you notes the first year. Then at my 2nd and 3rd anniversaries I sent requests for contact to Be the Match to see if my donor would reciprocate. Nope… It’s not like I want to be another old auntie or granny in his life telling him to make good decisions😅. I just want to let him know how his gift has impacted my life, along with family and friends.
Quite frankly I would not be alive right now if not for his generosity. He owes me nothing but I owe him everything!

Hello… my almost 84 year old mom was just diagnosed with AML IDH2 mutation. We are heartbroken with the research we’ve found so far. Has anyone had experience with the drug Enasidenib? She has neutropenia with also very low white & red blood cell counts. She is worried about the side effects of treatment and trying to process quality of life vs quantity. Any suggestions in dealing with this at this age?

Welcome to Connect @pegsue23. My heart goes out to you and your mom over her diagnosis with Acute Myeloid Leukemia. With or without the genetic mutation AML can be a tricky blood cancer to fight. I had AML with 3 mutations four years ago and it required months of chemo and ultimately a bone marrow transplant. I was 65 at the time and it was quite the adventure, to put it mildly.

As we age, we have less tolerance for aggressive treatments. At 84, your mom may be in the age group where strong chemotherapy is not advisable. Without treatment, sadly, this type of leukemia will continue to progress steadily and sometimes rapidly.

Enasidenib is a targeted therapy for patients with AML who have an IDH2 gene mutation. It helps to slow the progression by blocking several enzymes that promote cell growth of the cancer cells. It can, in some cases, help patients reach remission. Here is the FDA article on the drug:
https://www.fda.gov/news-events/press-announcements/fda-approves-new-targeted-treatment-relapsed-or-refractory-acute-myeloid-leukemia
While it may have some side effects such as nausea, it would be worth a try. I truly understand quality of life vs quantity. But if untreated, there would not be much time remaining. Your mom can give it a try and then stop if there are issues. It’s generally one capsule per day. With or without food. I’d suggest with food.
I had a targeted med similar to this which I took in the weeks between chemo rounds. Believe me, I had qualms too. But I actually had no side effects and the drug did its job, with one of the mutations I had, to keep it from replicating.

We have another member who is 83 and taking Enasidenib for another type of blood cancer. Maybe @deemcrae can share her experience with you and your mom.

How long ago was your mom diagnosed?

Thank you Lori for such a quick response. I am so glad that your transplant was successful! You sure went through a lot! We received the diagnosis last week. Unfortunately, she started having profuse night sweats in November but was told it was due to age; then in April she became very sick. That started a long process of different blood tests, x-rays, MRI’s and CT scans, with no diagnosis. She wasn’t able to be seen by the oncologist until June - then didn’t have the bone marrow biopsy until July 31. I’m hoping we aren’t too progressed in the leukemia for treatment to help. :0 Moms original response was to opt for transfusions for palliative care, as taking the chemo drug scared her. This information may help her decide to give it a try. Thank you!!

He @pegsue23 It’s really sad that your mother’s night sweats in November were dismissed as age related and that her diagnosis took so long. Not that it would have changed the diagnosis but it would have allowed her to be treated earlier.
I’d really encourage your mom to at least try the treatments. The Enasidenib has such positive outcomes for AML patients with the mutation your mom has. It could buy her precious time with her family.
I know just the word Chemotherapy can fill a person with dread. From my understanding, your mom isn’t being given the standard 7+3 induction chemo where she’d be in the hospital for 5 weeks or so. That’s a rough regimen. From what you mentioned, she’d only be receiving the Enasidenib. That’s a small, 50mg tablet taken once or twice daily with or without food. From my experience with the similar drug I had to take, I felt better with a light base of food in my tummy.

Just so that you’re aware of what’s ahead…if your mom opts not to take any treatment, then palliative care is next. But it would be only a short time as she’d be needing hospice care rather quickly. As AML progresses in later stages, it gains speed. What’s left of any red/white blood cells and platelets will be crowded out by the rapidly proliferating blast cells (immature and ineffective white blood cells). As that happens, she’ll be needing more blood and platelet transfusions, becoming increasingly fatigued.

I think you mentioned your mom is already in a neutropenic stage and without intervention that doesn’t reverse at this point. The Enasidenib could possible slow or stop the progression of the cancerous cells so that her marrow can start rebuilding with healthy blood cells again.

Truly, I know what an emotional time this is. So I hope you, your mom and family can have some meaningful and heartfelt conversations. This is a personal decision on her part but at 84, she could have some quality time left.
Please let me know what your mom decides and if I can help in any way. Hugs

Without knowing the particulars of your situation, no one can tell you what to expect. If you have questions, talk to your doctor.

I once asked my doctor what I could do to maximize the chances of successful treatment. He suggested that I make sure to keep all the appointments; take the medication; and get adequate nutrition.

To that I would add:
Reach out to everyone you know for help.
Do what your doctor wants you to do.
Hang on to hope.

Don't get too hung up on statistics. Statistics apply to groups, not individual people. There are many subtleties in probability and statistics, such as properly applying the idea of conditional probabilities.

Your doctor will have to deal with your individual case. He or she will have to deal with particular problems as they arise.

I have some practical suggestions. Bring an extension cord to the hospital if you want to charge a phone. Bring a notebook and pen with you so that you can make notes about what to ask when you see your doctor. When undergoing treatment, just focus on the immediate task. Narrowing your focus of attention can help. If you need to think at a higher level and make difficult decisions and do planning, your rational mind and your emotional mind might be out of sync. To deal with that I used a "pretend and act" strategy. That is I pretended that I was going to do what my rational mind said that I needed to do, and went ahead with making the practical preparations to do it even if my emotional mind was not quite there yet. By the time I got done making the preparations, my emotional mind was caught up and I could go forward.

I will attempt to attach a PDF file that contains an account of my own experience with AML and its treatment. You might want to go straight to the appendix that lists lessons learned. Even better, I think, would be for someone who cares about you but has more emotional distance from the immediate problem to do the reading for you, and glean whatever can be gleaned from my own experience that could apply to your situation.