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

My mom appears to be tolerating the chemo well according to her oncologist/hematologist. She finished her 14 days of venetoclax sunday. She has not required a transfusion yet. But her numbers are pretty low. Hemoglobin is at 8.3, and her platelet are at 39. I’m amazed that her neutrophils are down to 1%. She is feeling exhausted and gets up to eat and tries to stay up a bit but is sleeping a lot. Her biggest fear is that she will feel this way every month after starting the chemo over again. Her MD said that once the leukemia is in remission that even though she will continue to get chemo monthly it won’t make her feel like this. Can anyone explain this to me? And will her blood count numbers always go this low? Doesn’t seem like she will ever be able to go anywhere or see anyone again? If this is her reality I’d like to know that. Thanks

Good morning. I had chemo for AML 10 years ago. I thought I knew what to expect, but nothing prepared me for the fatigue of the treatment. I had a little energy until about 10 in the morning and then I was couch surfing for the rest of the day. I too worried I would never reclaim my life, but I did. I think it was the combination of the cancer’s presence, the treatment, and the resulting low blood counts. But once the AML was in remission, I started to see the other side.
So, from the bleacher section, here are some suggestions…#1 - find some really good books, listen to them on a kindle, and escape in a really good story. #2 - try to stay in the day, even if it is a chemo day, find something to smile about. #3 - try to avoid daytime TV, although the “real people” stories might sound interesting, the brain needs good energy coming in. And #4 - dance a little bit every day to a favorite song. And please know all of us who have been on this road, are cheering you and your Mom forward! Sending you a taste of autumn.

Thank you so much for this reply. I will share it with my mom.

My mom just got diagnosed with AML last week, and will be cared for by Mayo Clinic. I'm on the forum to seek resources for her and the survivors' comments stand out to me as hopeful and grounded. We go back to Mayo on Wednesday for a treatment options discussion. She is ready for Wednesday to be here, but it's still Sunday. Let me know if you're willing to chat outside of the forum sometime this week? Thank you for sharing your story here!

Hi @callyfreed, there are several of us in the forum who have had AML, gone through treatment that has required a bone marrow transplant. I don’t know if this is something your mom will require. It will depend on factors associated with her AML diagnosis such as possible mutated genes that can be responsible for the development of this form of leukemia.

I had 3 mutations that put me in a high risk for relapse and lower odds of survival. So it was necessary to have a bone marrow transplant (Mayo Rochester). All of my excitement was 4+ years ago and I’m feeling fantastic, as though nothing ever happened. That’s why I am here, to offer that same hope to anyone else going through this odyssey.

But not everyone requires a transplant. I have a good friend, whom I met locally, while being her mentor. She had AML but with 1 mutation that had great odds for successful treatment with no transplant. She only required chemotherapy and is now 2 years post treatment and doing great with no signs of relapse.

There are also modified chemo treatments with oral abrogating meds. So it will be interesting to learn what your mother is presented for options.

I can’t think of a better place for your mom than in the good hands of the Mayo doctors and nurses. The level of care spoils us for anywhere else.

The beauty of this forum is to have open conversations so that we can share with other people, such as yourself, who come here to learn through the experiences of members who have walked the walk. Members remain completely anonymous unless they want to message each other privately. And you can certainly message me too.
But you’ll get more perspectives if the conversations is kept in the forum. ☺️

Mayo Rochester is my home away from home! Is this where your mom is being seen?

@loribmt Thank you for responding so quickly to my comment. It is so encouraging to hear all the beautiful stories of those of you who have gone before my mom through treatment. I've already copied out some of your wisdom to share with my mom after she decides on treatment this week.

Yes, she is being cared for at Mayo Clinic in Rochester, it was such a "wildly loved" and surreal moment for me and my family to find out the same week that my parent's health insurance covers my mom and dad to get care at Mayo (before we knew mom had AML at all) and then, two days later have her white blood count test results in hand. I am so grateful she is getting the best care possible at Mayo Clinic for the duration of her treatment!

I don't know what the specifics are yet, and there have been two bone biopsies (one at Mayo, one at her hometown hospital after the initial low white blood cell count) done in the last week. We should know more about her specifics soon.

Thank you for the offer to connect and share support!

@loribmt It's me again, today my mom is starting her first day of AML induction chemotherapy. I would love for her to meet you, and have a companion of hope for her journey. I know you mentioned over the weekend, that you like to keep conversations about AML on the forum in order to allow others to learn along the way. I am wondering if you would be willing to send me and my mom to contact you for connection outside the forum? If so, I'm happy to receive emails or phone calls.

I screenshot your note to me from over the weekend, and read it out loud to her before she was admitted to Mayo Methodist Hospital, and your words provided hope for me and my family as we enter this chemo journey. Thank you for your kind words, and prompt support. Truly, you've made a difference.

Hope to chat again soon, if not in a personal correspondence, then here!

All the best,
-C

Hi Cally, This is a big day for your mom on many levels. Her first day on a road to remission and recovery. Her first day of wondering what’s going to happen, what she’ll feel like, etc…lots of unknowns on this journey. I referred to it as an odyssey. Made it a lot less daunting…more of an adventure in some surreal 60s film. 😅

I remember my first day of induction. I actually took a quick snapshot of the first injection going into my port so that I could paint a picture of it for my journal. It was the Idarubicine…(part of the 7+3). My nurse had purple gloves, a blue hazmat gown and the liquid was red. Quite the picture. ☺️ But I welcomed the chemo. And honestly by day two, I was actually starting to feel better because it was killing the cancer cells! My fever went away and for a couple of weeks I felt pretty well.

However, this will make your mom tired, she may lose her hair…I pre-empted mine with a buzz cut. She may be nauseated. She will most likely lose her taste buds which will interfere with ‘food feel…texture and taste’.
Fatigue will be her friend for a few weeks but it gets better! Her numbers will bounce back and so will she! I know this is painting a sad picture. Well, we cancer patients look like the walking wounded for a few months but then we heal, blossom and feel pretty invincible. Your mom will too! She’ll show you what she’s made of for sure! ☺️

I’m happy to chat here because what we talk about can help so many others. It’s all anonymous and I promise to be open and honest. Let me know how she does, ok? Was she given anti-nausea meds?

Also, I’m sending you a PM.

Hi Lori,

Thank you for your picture of the first day of chemo. She has already done a little "standing yoga class" out on the patio with me and my sisters. She has already showed us what she's made of and will continue to be her beautiful b.a. self. < 3

She has the most aggressive type of AML, and another diagnosis -- chronic myeloid leukemia on top of that. Her oncology doctor said she will likely not lose her hair on the treatment she has. Mom was happy to hear that.

She is a bone marrow transplant candidate, but has to make it through chemo in order to get there!

Your kindness and encouragement is much appreciated.

Hi @callyfreed Just popping in to see how your mom is doing with her treatments. If she’s on the typical 7+3 induction for AML, she’s more than halfway into her week. I hope she’s feeling ok. Any nausea?