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Our Story: AML Diagnosis and Stem Cell Transplant Success

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Published on November 25, 2020

Acute Myeloid Leukemia Survivor and Care Partner Share Their Story

What are your treatment options when you receive an AML diagnosis at 72 years of age? AML survivor Pat Fife and her husband and care partner, Bill Fife, share the story of Pat's very sudden acute myeloid leukemia diagnosis and her treatment experience. This included using a combination of azacitidine (Vidaza) and venetoclax (Venclexta) as her frontline therapy, followed by a successful AML stem cell transplant. Pat and Bill also share how they worked as a team throughout Pat's medical journey and the importance of celebrating each milestone along the way.

This program is sponsored by AbbVie Inc. and Genentech Inc. These organizations have no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.


Transcript | Our Story: AML Diagnosis and Stem Cell Transplant Success

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

Pat Fife: I was very, very healthy and I was on a plane coming home from France and I just felt very irritable and I started getting cold symptoms. And we got off the plane, I got home, and I had a week to go until Easter dinner, so a cold was not going to hold me back. So even though I felt tired, I just kept going and going. And then I noticed my gums started to bleed when I was brushing my teeth.

I did the Easter dinner. But that night I just crashed on the couch. I had such fatigue, overwhelming fatigue, and my temperature was going up and I could hardly get up the stairs to go to bed. So, I go to bed.

The following day she called and said, "You have to come to the emergency room right now. Your white count is way, way elevated." So, I went to the emergency room of our local community hospital, and I was admitted. I was there for seven days. During that time, I needed two blood transfusions and I had a series of tests and the tests culminated with I did have AML leukemia.

I wasn't angry. I was just annoyed because I had been so healthy. I always kept my weight the right weight. I never smoked. I never took drugs. And I couldn't believe, "Why me? Why me?" I kept myself healthy.

Bill Fife: I couldn't believe it. And Pat and I talk a lot and we talk to our family, we've got five nurses and a doctor in the family, so we were asking them what was going on. And I became, as an engineer, the one who checked between three and four in the morning on whatever I heard during the day to get smarter on it. So, over that period of time, I lost 10 pounds and I was getting four hours of sleep because every time we heard a new thing, I wanted to learn more about it so we could ask the right questions.

What AML Treatment Did You Receive?

Pat Fife: I was at a community hospital and I knew I had to get to a cancer center. And the best cancer center in the New York Area, as I knew it, was Memorial Sloan Kettering, also known as MSK. I wanted MSK. And my doctor was very, very supportive, my primary care physician. So, there was no question. So, I went to MSK and I saw a wonderful oncologist there. He did some more tests.

And I was able to go to the satellite for MSK that was 10 minutes from my house, which was wonderful. So, people should check out when they go, even though some place is geographically far away, there may be a satellite near you.

So, I had the first round of that, and I went back to the doctor. He did another bone marrow and he called me back as soon as the results came back, he was so excited because I had negative MRD and my blood counts came right back. So, at that point, he referred me for a possible bone marrow transplant.

He told me all the negative things, and he told me the positive things. And it turned out that I was a good candidate, even though I was 72 years old, I had no co-morbidities. I was in good health.

They tested my siblings to see if I had a sibling who would be a good donor. And lo and behold, my youngest sister was a perfect match. She and I look a lot alike, so I was kind of expecting that maybe this would work. And she was a perfect match, 10 match. And she also happened to be an iron woman and triathlete. So, I got really good cells.

Bill Fife: 14 months was this past week. So, we celebrated her 14 months. So, we celebrate every month anniversary to say, "I'm lucky she's still here."

What Advice Would You Give Someone Considering a Stem Cell Transplant?

Pat Fife: You have to do everything that the doctor says, even though it may be terrible that day for you. They wanted me to walk a mile every day around the hall. So, I did that, even the day that I felt the worst and my hemoglobin was down to seven. I was going to need a transfusion that day. But I got up and I did it.

They tell you that you need clothes that button up the front and I didn't have any pajamas that buttoned up the front. So, I said, "You know what? I'm going to have some fun." So, I went to the Victoria Secret website and I got some really nice pajamas that would button up the front. They said, "You need sweatshirts because you can get cold. You need to dress in layers." So, what I did was I told my children and my grandchildren that I wanted sweatshirts from every college they had gone to and every graduate school. So, I had a whole nice collection of the sweatshirts.

And you have to really be very, very positive. I just said, "I'm going to do this." And I set small goals for myself. So, the first goal was, "I have to get through this initial chemo." And then when I got out and I was at the apartment, I said, "I'm going to walk a little more each day." Then I was very shaky because they put you on anti-rejection drugs that make you very shaky, and I said, "By the end of the month, I'm going to be able to put on eyeliner." And that's what I did.

Bill Fife: I've run major projects all around the world and the most important project that I've ever run is keeping Pat healthy and being with her when she needed me. You have to celebrate every little one of the milestones that she's talking about. So, for example, we celebrate every anniversary of when we met, we celebrate.

On the other hand, when she would get into a funk and really be feeling terrible and I could tell that right away in the morning, I would send texts to our three children, our doctor, our nurse and our lawyer and say, "Mom needs help. Please call her and lift her spirits up." And so, we involved friends and family and people we knew to make sure when she was having a bad time, she had a lot of family support.

Did You Have Side Effects from the Stem Cell Transplant?

Pat Fife: I was very lucky. Everybody is different. So, my experiences are not going to necessarily be yours, but I really didn't have any complications. I lost my hair and it didn't grow back in the way, the color that it was when I went in. But the other complication that I did have nine months out, I did have some graft-versus-host disease. In other words, my cells didn't like my sister's cells and the way it showed up was in my liver. My liver enzymes became markedly elevated. I had to have a telehealth visit with the liver specialist and I was put on, I was kept on my anti-rejection drugs and I was also put on a steroid and that has really, it's come down. It's not resolved yet. I'm still on the steroids, but that was my big complication.

Do You Have Any Anxiety about the Possibility of Relapse?

I have to get past it. There's really not anything… I feel like I'm still doing everything right. There's nothing I can do. I know my chances are good and every day is like so... it's a gift, every day is a gift. And when I first came out, I got to celebrate the holidays with my family. That was like... And I went through in my mind, I might have not been here. And then I do – I do yoga. I do, do meditation and we still go to church, but I can't go to church. So, we have a Zoom church service every week.

How Did You Decide Between a Transplant or Staying on Maintenance Drugs?

It was agonizing. But the thing that really clinched it for me was I asked my oncologist. I said, “Do I really need to go to the transplant? What do you think?” And he said, “Well, it's your only hope for a cure.” And he was right, because if I didn't try it, then I would never know if it would work. So, that is how I made my decision.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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