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

Happy 10th Rebirthday to kt2013! I am looking forward to celebrating my 3rd Rebirthday on July 22nd! Lori, I loved your comments about your male donor! I had a 20-something female as my donor so I tell people I’m in my 20’s again! 😁

My advice to anyone who is going through AML is to take one day at a time and focus on what you need to do that day. It’s like a job, you just keep at it and get through each day. As my husband and I would say, what choice do you have?

I was diagnosed at age 60 and had three different regimens of induction chemo before I got into remission, which took almost 6 months. Then we relocated to Rochester, MN for the transplant and follow up. I got pneumonia in late 2020 and went into respiratory failure, which they determined was GVHD, and spent 17 days in the ICU. Since then, I’ve had a couple bouts of high liver enzymes, one which required hospitalization, due to GVHD. I was so lucky to have a great BMT team at the Mayo Clinic!

The good news is that I am golfing about 75 rounds per year and have become an avid pickleball player, so there is hope for living a normal life on the other side of AML! Just keep fighting, take it one day at a time, and never give up!

Thank you, I will send her your words of encouragement. I mentioned the stem cell, the dr said he didn’t think she could survive the chemo and said she would have to be admitted to the hospital for the chemo, I think she was scared and didn’t want to die in the hospital. The prognosis was so bad they told her she may only have a few months. She is seeing a top aml specialist at UCD although they are waiting for the last results before they schedule her with him.
I have been just texting her my other girlfriend has been updating me since she does not want to keep repeating her diagnosis.

What clinical trial and where was it? Also what is GVHD? Thanks

I was initially hospitalized for chemo for six weeks, then more chemo once a month 5 days at a time, until I was ready for my transplant. Chemo definitely wasn’t a walk in the park, but with my type of mutations it was my only option. I was 51 at that time and wanted to live.

GVHD is graft v host disease. It’s something that people with stem cell transplants can develop, where the new immune system starts attacking different organs. My clinical trial started on the day after my transplant and was to study whether a certain drug would decrease the likelihood of getting GVHD. I had to quit the trial, since it was affecting my kidneys and I was getting close to needing dialysis.

I do have GVHD of the skin, but I am on medication for it and it’s under control.

I know, all this sounds scary and no one is prepared to deal with this diagnosis. I hope your friend is able to get the best possible treatment. Making treatment decisions is challenging!

@alive Would you mind telling me what drug was part of your clinical trial? I have been on Ruxolitinib (Jakafi) and my creatinine levels have been high recently. I wonder if the medication is affecting my kidneys.

Sorry, that was over 6 years ago and I don’t remember the name of the drug.

Hello,
I was diagnosed with AML December 2022. I am overwhelmed and feel hopeless of living very long. Doctor told me 15 to 18 months on my chemo. Have consulted with 2 doctors and having a third opinion this week. The second opinion doctor told me that only 70 % of people who had a transplant will go to remission and then only 25% stayed cured. Not sure how old you are, but I am 71. Scared of whether I would even live though it. My daughters tell me to keep a good attitude, but its hard. I don't know where to turn right now and would love to connect with you.
Thank you, Jan

Hello, @jan8 Welcome to Mayo Connect. There are several of us in the forum who know exactly what you’re going through and we’re all on the other side of AML now. We’ve each had a bone marrow transplant and are doing wonderfully well.
I was diagnosed with AML, with FLT3 and 2 other mutations, making it a challenge to treat. That was 4 years ago Feb 2019. After 4 rounds of chemo I had my transplant the end of June that year. I had no option to be on extended chemo. It was a transplant or pushing up daisies. I was 65 at the time and now I’m 69 and living my best life!!
I’m mentoring 2 patients right now in my hometown, who are both in their early 70s and have just had bone marrow transplants.

It’s worth getting an opinion with a larger hospital or clinic which specializes and routinely does stem cell/bone marrow transplants. Honestly, in my opinion, it’s not a walk on the beach but it is a heck of a lot easier than 15 to 18 months of chemo!!
I’d like to introduce you to a few more members who have also had AML; @alive who had her transplant 7 years ago, @edb1123, who’s coming up on her 3 year re-birth day and @kt2013 who just celebrated 10 years post transplant!

This is overwhelming, I know! But you’re not alone and can ask us anything. I’m not sure where you’re located but here is the information to request an appointment at Mayo Clinic.
Click on the link and it will open to the main page of Mayo where you can select the campus nearest you for a 2nd or 3rd opinion. You have nothing to lose and everything to gain. http://mayocl.in/1mtmR63

How are you feeling after a couple months of chemo?

Hi, Jan. Thanks for sharing your story. I am 69 and I was 59 when I was diagnosed. I agree, this diagnosis can strike terror in your heart, it hit me really hard. And chemotherapy is really ugly. But it is also your friend, not a friend you would choose, but one you need right now. And I tried to focus on the fact that chemo had a beginning and an END. And being a really stubborn person, I decided I was going to get through it.
My AML was high risk and I was told the statistics too. But a wise person also told me those numbers belonged to other patients, they didn’t belong to me. I would write my own story. My doctor told me he made a treatment plan and for the next six months, I belonged to him. I trusted my team and jumped on board. I am a person of great faith and I had a great family. I went to the hospital chapel every morning to talk to God. That helped. I knew God wasn’t going to let me drown, but some days I paddled pretty hard.
My family lifted me up and carried me on the days when my spirits were low, that really helped too. I had some issues with depression and I got some help for that, also a good idea. I found out this is not uncommon when facing a challenging diagnosis like AML. Don’t be afraid to ask for help, if you are feeling this way, as well.
And the most important thing that I did was to live into every day. If yesterday was a bad day, I tossed it in the closet and slammed the door. I couldn’t see too far in front of me, not knowing what might be coming, so I just tried to live in the day I was in. I set up a Caring Bridge site and kept in touch with friends and family who couldn’t visit me. I read their words and prayers every day and this helped me focus on the day I was in. It really is, one day at a time.
Before my diagnosis, I was the “fixer”, now I needed help. I didn’t like this new role very well, but that was only one of many lessons I needed to learn, I guess.
I hope there are a few words here that help you on your journey. It is okay to be afraid, everyone is. But trust in the love and support of those who surround you and share your load. I will keep you in thought and prayer.
Kt

I totally agree with KT’s comments! I am also stubborn and determined, and with the help of my caregiver (husband), family and friends, I got through the chemo and the transplant. I was told that I was high risk for relapse because I was resistant to the chemo, and it took four different regimens to get me into remission. It was difficult and I had awful side effects for a while, but I took it one day at a time, as KT said. I was not a candidate for just chemo - my life depended on the transplant - so I had it in July, 2020 and now I’m golfing and playing pickleball again! There is real hope for remission and leading a normal life! I wish you all the best!