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My AML Story: Persevere Through the Setbacks

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Published on April 30, 2021

Persevering Through the Setbacks After an AML Diagnosis

Hear AML patient Elaine Barr share her journey with acute myeloid leukemia and discuss the treatments that didn't work, the therapies that were postponed, and the side effects that derailed her recovery efforts. Elaine's story is one of two steps forward and one step back, all in an effort to get back to "normal." She is joined by Lindsey Lyle, PA-C, MS, of the University of Colorado, who offers advice and strategies to patients who are experiencing their own setbacks.

Support for this series has been provided by AbbVie, Inc. and Genentech, Inc. Patient power maintains complete editorial control and is solely responsible for program content.

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Transcript | My AML Story: Persevere Through the Setbacks

When Were You Diagnosed with Acute Myeloid Leukemia (AML)?

Elaine Barr: Hi, I'm Elaine Barr, and on January 25th, 2020, I was diagnosed with AML, acute myeloid leukemia. It was four days before we were supposed to leave for Palm Springs to spend the month of February, for the first time ever. I had retired at the end of 2019, and we were looking forward to spending time in our condo in Palm Desert. When I got diagnosed with AML, they said, "You're not going anywhere. We have a room for you at the hospital on Monday morning – and plan to be there for about 30 days."

Elaine spent 41 days in the hospital. Her first and second treatments did not result in remission. But her third treatment did.

Lindsey Lyle: I’m Lindsey Lyle, a physician assistant at the University of Colorado in the blood disorder center. Sometimes the first treatment for acute myeloid leukemia does not actually get our patients into the desired remission that we had planned, or that was our goal for the upfront induction treatment. And when this happens, depending on the response, we may go to another type of chemotherapy agent. Or we could potentially continue with another round of induction if we did get some response in the bone marrow blasts. Sometimes the second treatment doesn’t work, and we have to get creative, and we have to go to a third line of treatment. Oftentimes this is in the context of a clinical trial. Remember, we have a target goal of blast percentage that is very objective. However, if we make progress along the way, we are getting closer to that goal, even if we may not meet it right upfront.

What Setbacks Did You Experience During Treatment?

Elaine Barr: That was the goal, was to be able to get rid of enough blasts where they could do the stem cell transplant. We said goodbye to our family and friends, packed up the car, drove to Rochester, had a condo rented for three months. I went through a lot of testing that they do before the transplant, and they discovered that I had more blasts than they wanted. So, they decided to postpone the transplant and have me start more of the chemo that I had been on at the latter part of my induction therapy.

So, we moved back to Rochester and on July 22nd, I had my new second birthday. I got the stem cell transplant. It was over in about 45 minutes and they sent me home. It was like, "Is that all there is to it? I've waited all these months and worked so hard to get to this point." And the stem cell transplant is very anticlimactic.

Elaine had side effects from the transplant and was again admitted to the hospital for twelve days.

Lindsey Lyle: Once a patient has had a stem cell transplant, there are complications that can arise that can be quite severe, especially within the first 100 days of transplant. The things that are really concerning to the medical team that we would like to know of are if you develop a fever, chills, any sort of new GI symptoms: nausea, vomiting, diarrhea. This may be a sign of acute graft-versus-host disease. Additionally, any new onset of skin rash or any skin changes. Again, this may be a sign of graft-versus-host disease.

After three months of being relocated for treatment, Elaine was ready to go home.

Elaine Barr: I felt really good. I was exercising to regain my strength. I had a better appetite. I was eating well, sleeping well, exercising. And then in November, I got a really bad cough that I couldn't get rid of and eventually they diagnosed it as pneumonia. And they put me in the hospital, down at the Mayo Clinic, and I was in bed for 17 days. So, all the muscle that I had built back up was gone, and I had to recover all over again.

What Should Patients Know as They Persevere Through Cancer Treatment?

Lindsey Lyle: If patients are not achieving the response that they had hoped for, or that their medical team was trying to achieve, this can be really devastating. And I think that the important thing is to number one, surround yourself with family and friends who help build you up and help support you during this time that is undoubtedly very difficult. Secondly, communicating with your medical team about your goals and desires is really important, and these can change over time, so this needs to be a continual conversation.

The setbacks happen. This is a part of, unfortunately, treatment of cancer and the setback may not be disease-related, maybe it’s an infection that sets you back and prevents you from going to a transplant. Know that your medical team will always work with you to try and achieve your goals. And I’m always telling my patients, you know, I am in your corner, we are trying to get you where you need to be, and we work together as a team; me, the patient, and then my colleagues as well. And so, I’d say, really, the most important thing is to communicate what your goals are, to not let the setbacks get you down, and to surround yourself with people who can help you move forward and get through the setback.

Elaine Barr: Back in Minnesota, the golf season started in early April, so I started golfing, walked nine holes, built my way up to walking 18 holes, and now I'm sitting in beautiful Palm Desert, California, in the sunshine, the warmth. We're playing golf every day and I feel normal.

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