Published on July 27, 2020
AML Patient Story: Dealing with Leukemia During Coronavirus
Imagine dealing with acute myeloid leukemia and facing a stem cell transplant all while the world is dealing with the impact of COVID-19. AML patient Elaine Barr and her care partner Denny Barr discuss how Elaine's AML diagnosis and treatment have impacted their family and friends. Even in the time of the COVID-19 pandemic, Elaine and Denny share how they found support, how the newly approved combination of Vidaza and Venetoclax became Elaine's "miracle" and how the AML diagnosis affected their entire family.
At the time of this interview, it was unknown if Elaine would be able to have a stem cell transplant. We are excited to report that she received her transplant on July 22, 2020, and is doing well. This story will continue...
This is a Patient Power program. We thank AbbVie Inc. and Genentech, Inc. for their support. These organizations have no editorial control, and Patient Power is solely responsible for program content.
Transcript | Family Shares Journey with AML During Coronavirus
How Did You Find Out About Your AML Diagnosis?
Elaine Barr: I decided to go to urgent care that day. Luckily, they took blood tests and when the doctor got the results of the blood tests, he told me you're not going to California until you see a hematologist. I didn't know what that meant. I said, "Are you telling me that I have cancer?"
The next day, a doctor from Methodist Hospital called me and Denny got on the phone with us and she told me that I had acute myeloid leukemia (AML).
Denny Barr: That's kind of a keyword in any descriptive title of anything. If it's acute, they could say serious. Acute means you got something there.
Elaine Barr: The doctor on that call then told me, “You are going to be admitted to the hospital tomorrow. We have a bed waiting for you. Be at Methodist hospital at 9:00 AM.” This is a Sunday night that she told us this and pack for approximately 30 days to be in the hospital.
Denny Barr: Thirty days. Wow. They drop the bomb on you, and they tell you what you have to do and then what are your choices? Well, the answer is you don't have any choices, so let's go.
How Did Your AML Treatment Begin?
Elaine Barr: I had the 7+3 chemotherapy regimen. Then they did a bone marrow biopsy. My blasts went from about 80% down to, I think it was 40%. And so, the standard treatment had not worked well enough.
Denny Barr: You hit these roadblocks with the treatment, and you go, "Okay, now we've got to go with something else." Then that doesn't work, and you're going, "Okay, now they're going to do something else."
Elaine Barr: They released me from the hospital and my counts were looking pretty good.
Denny Barr: How did I feel? I just was there to do what I had to do.
Elaine Barr: Every day.
The doctor here at Methodist Hospital called me and said, "I got your results, and I'm ecstatic." That was his word. And I said, "Well if you're ecstatic, I'm really ecstatic." And he said, "We don't see any blasts at all, and so we're going to talk to the Mayo Clinic and try to get you scheduled for a transplant." And of course, they had to have me go through a lot of tests beforehand. So, they started scheduling all of that.
What Was Your Stem Cell Transplant Planning Process?
We went to the Mayo Clinic. We went down to Rochester, Minnesota on June 1st. We had rented a place to stay for 100 days because that's what they told us to expect. It was very disappointing to have the transplant canceled because, you know, you kind of gear yourself up for it and I’m anxious to get it over with. And then, all of a sudden, you’re told, “No, can’t do it. You have to go home. We have to wait longer.” But I know it’s the right thing to do because it’ll give me the best chance of success.
Fortunately, my doctor at the Mayo Clinic had done a search of the national registry for Be the Match, and he had found two young women in the US who were both a ten for ten-match with me. One of them has agreed to be my donor, and they're going to start harvesting her cells on July 7th.
Neither of us are working now. I am retired, but I'm not getting any Social Security or income. And Denny is getting Social Security. For not having any real income anymore I was concerned about that. But my health insurance is covering 80% of the expenses at this point. All of my out of pocket has been met. I was very surprised to find this out but they're also covering our lodging and transportation expenses while we stay in Rochester.
Denny Barr: Up to $10,000.
Elaine Barr: ...which is a huge blessing.
Denny Barr: Yes. This procedure has been around for quite a long time and there are many people that have gone through this and they have had differing degrees of success. We did visit with a fella who is 10 years a survivor. Also, Dr. Alkhateeb down at Rochester, he told you, "Elaine," he said, "You're one of the healthiest 60-year old’s I've ever seen. This is going to bode well for you for survival."
Elaine Barr: And I'm a fighter.
Denny Barr: You are, you're a fighter.
Elaine Barr: I'm stubborn.
I am hopeful. I will admit that in the back of my mind there's always that worry about having a relapse because I have read about that, but I am trying to stay positive. And as both of us have done, we've tried to take it one day at a time, not look too far into the future, not try to forecast what's going to happen or think what's the worst-case scenario. I don't want to think that way, I want to think about the positives and what can I do to make it as successful as possible and doing whatever the doctors tell me to do because that's all you can do. You don't have a choice. You can give up, I guess, but I'm not going to give up.