Who is living with AML and how do you handle each day with chemo?

I have AML since August. Chemo in hospital was not a problem at all, make sure you take something for nausea works really well fir me . Iam on chemo oral at home taking nausea meds works so well..Take Care

Welcome, @schmidty1 You have my empathy…AML is harsh. Until a few years ago, those of us in our, so called, golden years had very little recourse except to get our affairs in order. With some of the advancements in the field of blood cancers, we now have options before us to help slow the progression of leukemia such as AML.
The only potential cure for AML is a bone marrow transplant and for some patients who are 75+ or have other co-morbidities it may not be an option. So having the reduced intensity medications have really given many people more time in the pursuit of happiness…

As @anita1959 shared with you, nausea can be an uncomfortable side effect, along with fatigue. Most often these meds are on a cycle so patients basically roll with the wave of having a week or so of down time…then rallying the next few weeks for before the next round.

We have several members who have AML. Many have joined @lindagi in the discussion she started about 2 years ago.
~AML, age 78, taking Decetabine/ Venetoclax, no transplant
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
Have you discussed the treatment plan with your hematologist oncologist? Do you know what you’ll be taking? If you don’t mind sharing, what were your symptoms leading up to your diagnosis?

I know how scary the diagnosis of AML is. I was hospitalized for 15 days and treated with induction therapy. I celebrated my 1 year diagnosis on March 30th. I was 75 when I was diagnosed and had been in great health. I won’t say the road to where I am now wasn’t rocky but I am blessed to feel good most days. I even got back to riding my outdoor bike last weekend (platelets are up)! Currently I am on oral pill Venclextca for 3 days concurrent with Dacogen 1 day. That was not always the case. Initially, after release from the hospital I had 5 days of Chemo and 7 days of the oral pill every 6-7 weeks. The care team gives me Zofran for nausea before my chemo treatment. I drive myself to and from my treatments - gratefully no problem after treatment.
As Lori mentioned in her post the protocol was for those of us healthy enough, we were given info on Bone Marrow Transplant as the only “cure” for AML. I elected to decline the BMT and am in remission and continue on maintenance driven by weekly blood draws. You will learn that your blood draw numbers will drive your treatments.
I listened on Tuesday to a webinar sponsored by the Leukemia Research Foundation on the 3 new medications that are showing great strides on treating AML with FLT3 mutation. As a result there maybe a cure on the horizon that does not entail a BMT! That webinar will eventually be posted on their website. In addition the Leukemia Lymphoma Society is hosting a webinar on May 29th hosted by Dr. Mannis Associate Professor of Hem/Onc at Stanford on AML and the strides being made in treatments. You most likely can google LLS and Dr. Mannis and get the link. I wish you all the best in this new phase of your life!

@schmidty1, how are you doing? Did you start chemo? How is it going?

I have aml..have taken four cycles of vidaza and oral pill daily..will get a bone biopsy soon. And hope that I am in remission...I pray they fine a cure for all of us ..

Diagnosed 2/24/2024 with AML , 83 yrs old. February thru June 2024, in and out of hospital 5 times because of fevers caused by pick in my arm. Streptococcal infection. Don’t leave the pick in your body. Get a new intravenous each time.
By October 2024 had 6 bone marrow biopsies, and now in remission. February thru June 2024, was rough. Thanks to daughter and husband coming to hospital every day, I survived. I didn’t know what was going on. Was hallucinating a lot the first stay. They wanted to put me in a coma for 2 weeks in ICU - we said not on your life. You need some one with you daily. I was so incoherent, I needed someone to speak up for me. My daughter and husband saved my life by being there. If you can stay out of the hospital, no problem, you should be good by being able to stay home.
Hospitals are not great, they are training new people all the time and they are not that caring. Some are fabulous, but most are there for the paycheck. Good luck to you. 🙏❤️✝️

Still taking chemo, but in pill form, 2 a month, to keep it at bay. Hips and legs sore from 6 bone marrow biopsies. I get around. Have trouble doing things yet if standing too long. It seems to slowly be getting better.

Hi @schmidty1 Thinking of you this morning and wanted to check in to see how you’re fairing with the AML treatments. It was all pretty new to you the last time we spoke and I’m hoping all is going well.
Are you tolerating the medications ok? Is your doctor seeing some improvement in your blood numbers?