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

Hi! I am here to share a celebration story. In 2013, I was diagnosed with an aggressive form of AML. I participated in a clinical trial to get the most promising treatment at that time. And I was blessed to have a near perfect match for a stem cell transplant from one of my sisters. She gave me 5+ million healthy white blood cells which became my new immune system. She loves fancy shoes and hot sauce, but I did not get gain those traits.
This year, like every year, I am celebrating another 365 days in gratitude for each sunrise and sunset and every hour in between. When my whole life changed, I could never have imagined the blessings that would follow the worse year of my life. If you need someone to talk to about your AML journey, reach out. I would love to connect with you. Best wishes.

I agree that chemo for AML is brutal! I had 5 rounds of chemo before I had my transplant. The recovery from each chemo round was slow and I had all the symptoms you described. Your body will recover from those symptoms. Make sure to talk to your doctors about what symptoms management may work for you.

My skin also became very thin and dry. I went through a number of different moisturizers before finding one that worked for me.

While I was recovering from all the treatments, I had to evaluate what I had control over and what was completely out of my hands. (A lot was out of my hands!) My mental recovery started when I began walking. At first, I only had enough energy to walk for 5 minutes. After a few months, it increased to 1,5 hours a day. I was living in Michigan then and did a lot of my walking in my living room, since it was in the middle of winter. I also could focus on nutrition and needing to get more protein into my diet.

Recovery is a long process, but do what you can today to strengthen your body.

Hi @txsnowbird, Welcome to Mayo Connect. Acute Myeloid Leukemia (AML) is a sneaky one. The cancer cells can be elusive by hiding, they can also morph quickly to evade chemo. That’s why there is often ongoing chemo for several months after the initial induction treatment.

Chemo to treat AML is aggressive. It has to be in order to keep ahead of those creative, aggressive cancer cells. Each monthly cycle of chemo knocks down a few more cells that might be lingering and the goal is, at some point to out-wait or out-wit any cells that are hiding from the chemo.

Unfortunately, the side effects from each subsequent round of treatment can take a toll requiring longer recovery time for your body and may leave your immune system weaker as well. This is possibly why you’re seeing changes in your skin, feeling nauseated and just plain miserable some days. It is depressing and you feel like you’re never going to be normal again.
I had AML, but mutations that caused it to happen required a bone marrow transplant after several rounds of chemo. Not everyone requires that as a last resort.
A good friend, whom I met while mentoring at our local cancer center, has a similar scenario as yours. She went on to have many rounds of chemo. After clean biopsies, she is finally off the meds and is now recovering really well. Her skin and digestive tract are better, she has energy and hair is growing in!

It’s excellent news that your latest biopsy has come back clean! That is a very good sign. Has your hematologist/oncologist talked about when you’ll be able to stop the monthly chemo sessions?

I was diagnosed with AML last year in the first week of August. Here it is the end of Feb and the last biopsy I had said I was cancer free. I am still on bag chemo for 4 days a month and home chemo pills for 14 days on and 14 days off. My question is the longer I am on chemo the more things are happening to me. My skin is breaking out in bumps and dry skin. At night my tummy feels like I want to vomit. I haven’t done that yet but depression is setting in and I feel like it’s slowly killing me not just the cancer.

@claireb, I echo what @grandpabob and @loribmt said. While you may accept your husband’s decision and support him, it doesn’t mean you have to like it. My father made the same decision, which we all supported. My mom still cherishes the special moments that the clarity of the decision allowed them to have. At the same time, she appreciated being able to voice with me that she experienced an array of emotions and needed to be able to talk about those feelings with others. If you’re ever feeling things like “I’m not ready for this” or “this isn’t what I want” or anything else that no one can predict, know that you can talk about it here - without judgement.

There is always a level of comfort when we can take charge of our own lives. This certainly wasn’t an easy decision for your husband but truly one to be respected. It’s wonderful your daughters are able to come and cherish this time together. Not everyone is blessed with that opportunity. It sounds like you have an amazingly supportive family, but as Bob said, don’t hesitate to reach out should you feel the need. Wishing you and your family peace, Lori

@claireb, A very difficult decision. I am so glad to hear that your family is OK with it.

Your daughters are really special committing to spend this time with you. You and your husband have obviously done wonderful work raising your children.

You are most welcome for the support you have received on Connect,
Take care, Please feel free to continue to reach out on Connect as you see fit.

Bob

Update: After our virtual visit with the oncologist at the U of M last week, my husband made the decision to not proceed with therapy. The oncologist we spoke with was incredibly knowledgable, kind, and patient as she addressed our questions and concerns. She laid out all the options without sugar-coating anything. It was a difficult decision for my husband, but one that I expected from him. He said the discomfort of therapy and the weeks of isolation from family would kill him.
He started receiving hospice care at home on June 20, two days after his 74th birthday. Our two out-of-state daughters came "home" to be with us and will be here for the duration. We are so lucky to have them in our lives. He is able to have ongoing FaceTime visits with our grandchildren. One of our daughters said the silver lining in all of this is that we have time to reminisce and say good-bye. We are making the best of the remaining days/weeks of his life. Thanks to all of you for your support.

Thank you for sharing your experience.

Hello @claireb

I did not have AML, my cancer was Large B cell Lymphoma that in the end had to be treated using Car T therapy.

I was 62 years old when diagnosed. I did spend about 1 week in isolation when receiving one type of Chemotherapy, so not as long as one would be isolated if receiving a transplant for instance.

Chemotherapy can be tough, but as Lori stated, it can extend life, it is so worth it.
Lori outlined some of the side effects very well. in my case, after a few treatments I became extremely tired a few days after the infusions. Nausea was not a serious side effect for me, the meds that were provided post treatment were a huge help to combat that. Bodies react differently to Chemotherapy, joint paint, muscle aches, rashes can all be side effects of cancer treatment. Of note, it could be the associated medications that contribute to some of the side effects.

I had no interest in eating which was really hard on my wife not knowing what to make, I found small servings was best, also it is OK to just have cottage cheese some times. As difficult as it was getting daily exercise was critical, I feel to this day, if I had not been in great physical and mental shape prior the the diagnosis, I would not be here today.

Receiving the diagnosis is difficult, there are in many cases a lot of options for treatment, the success rates are better all the time.

I understand your appointment is tomorrow, I would suggest when attending the meeting, use the mindset that no question is a silly question, they are all important to your husband and to you.

If you are willing, let us know how things go for you tomorrow.

Feel free to reach out at any time.

All the best tomorrow.

Bob