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June 17, 2023
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Answer Summary

Members responded warmly to Gary's question about AML experiences, sharing a wide range of journeys including many who achieved remission... Read more

Members responded warmly to Gary's question about AML experiences, sharing a wide range of journeys including many who achieved remission through chemotherapy alone, others who required stem cell transplants, and some managing the disease long-term with combinations of pills and injections like Venclexta, Azacitidine, and Tibsovo. Several members described ongoing challenges including chronic fatigue that persists even years after treatment, low blood counts requiring frequent transfusions, mouth sores, and the need for social isolation to avoid infection, while others celebrated major milestones like one survivor marking 36 years post-transplant and another maintaining remission for 7 years without a transplant. A recurring theme was the importance of taking each day as it comes, finding activities that bring joy and purpose like farming or home projects, leaning on faith and prayer, and holding onto hope while acknowledging the very real fear of relapse and the emotional toll of waiting for test results.

A MyLeukemiaTeam Member

I was diagnosed in May 2018, with AML. I had a stem cell transplant in September 2018. Since the transplant I have had more UPS than downs. I count each day as a blessing. My biggest gift was.seeing my first grandchild Asher. He is 16 months old and even though Grandma has trouble lifting him at 28 pounds I am lucky to be feeling well to enjoy him. I feel.well...there are little issues but nothing that I can't handle. I am 71 years old. Best wishes to you.

June 17, 2023
A MyLeukemiaTeam Member

It’s been 11 months since my first blood transfusion. I am now for the first time going 5 weeks between transfusions! No chemo just healthy living and trusting God. Blessing to all of you

February 3, 2024
A MyLeukemiaTeam Member

I was diagnosed with AML in November of 2002, I was 40 years old at the time. I had chemotherapy and was pronounced as "In remission" in March 2003. My treatment was two weeks inpatient chemotherapy, then two weeks inpatient recovery, all in isolation to prevent external infection. Followed by a month of home recovery (two months of treatment and recovery), then back to the hospital for a repeat of the process, so I was in the hospital or isolation at home for a total of four months. Now 22 years later, I still have chronic fatigue (even with an exercise program) that has followed me since initial treatment, but aside from that life has been pretty much the same as it was before the cancer, just a bit slower. For a while I went back to work at jobs that were low physical stress. I was a systems analyst for Locheed Martin when I was diagnosed and I went back to work there with no problems. I retired from that job an then to stay busy I took on some part time work as a retail sales clerk, assembly line worker in a low intensity environment, running an embroidery machine makeing name tapes for military uniforms, nothing too strenuous because of the fatigue.

I still do home improvement projects around the house. The peak of that was putting in new stairs in my house, but the fatigue makes any speed in these, non existent. A project I would have done in a day in my youth now takes a week,

March 12, 2024
A MyLeukemiaTeam Member

My AML was diagnosed October 2022. Completed the V and V chemos until February 2023 when I went into remission. My AML includes the P53 translocation (2).
Fortunately, we had opinions from Sloan and Penn and a sibling with a hundred percent match. By early March, a transplant took place at Penn. We expected thirty days in the hospital following the heavy chemo and transplant.
This ended up being fifty days. They were wonderful working through side effects.
A few bumps in the road but all good.
Within a week of homecoming, I cooked a meal. Since I am semi- retired and can work from a home office, I decided to continue.
Life is social distancing, no travel, gardening and a few other restrictions since I have no childhood vaccines yet. ( similar to Covid restrictions).
Fortunately, my husband and I enjoy our company, home and Netflix.
Thankful for each day and choose to live in a happy world.
Think of living happy days and if you are type A, try type B.
Do what you can and accept the rest!
Prayers!

February 28, 2024
A MyLeukemiaTeam Member

Prayer along your journey

February 5, 2024

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