Skip to Navigation Skip to Search Skip to Content
Search All Centers

Family Shares Journey with AML During Coronavirus

Read Transcript
View next

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 join Patient Power co-founder Esther Schorr to 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.

Featuring

Transcript | Family Shares Journey with AML During Coronavirus

Esther Schorr:
Hi there. This is Esther Schorr with Patient Power. Today, we're going to hear the story of a couple who are facing a journey together that involves treatment of transplant for acute myeloid leukemia or AML. We'll hear not only the patient perspective but the perspective of a devoted care partner. I want you all to meet Elaine and Denny Barr. I want to say hi to both of you. Hello, Elaine and hello, Denny.

Elaine Barr:
Hi, Esther.

Denny Barr:
Hello, Esther.

Esther Schorr:
Thank you for being here with us. Just a little bit of history for those of you who are watching. A year before Elaine's diagnosis of AML, Denny was treated for a malignant sinus tumor. He had surgery and radiation, and now he goes every four months for scans and hopefully is home free at least that is of course our hope. And I guess Denny, your next checkup is in August. Is that right?

Denny Barr:
It's August 5th. I get two scans, a CT scan and an MRI scan. And then I go see my oncologist on the 7th of August, Dr. Jahagirdar.

Esther Schorr:
Okay. Well, so really this last year has been a journey in and of itself, and now we have Elaine's journey that you're going on together. You two live in Bloomington, Minnesota, right? And it's about what an hour and a half from Mayo Clinic where you're going to have your transplant. That right?

Denny Barr:
That's correct.

Elaine Barr:
Yeah.

Esther Schorr:
Okay. What tipped you off that something was amiss?

Elaine's AML Diagnosis Story

Elaine Barr:
Well, I had had two respiratory infections that lasted for almost a month each time. And the second one came on in late December. I was on antibiotics. Eventually, the cough went away and I started to improve, but I noticed that I was having a lot of lightheadedness. And when I went up the staircase, I was short-winded, which was not normal for me. I usually walk five to seven miles playing golf.

Esther Schorr:
So you're really active.

 Elaine Barr:
Yeah. And so I knew that something wasn't right. We were only four days away from leaving on our trip to California. I told Denny, I just don't feel good. I don't want to go out to California and then have to go to the doctor out there to find out what's going on. I decided to go to urgent care that day and luckily they took blood tests. 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 thought that was just a blood doctor. I thought maybe I had an infection, which is why my counts were off. But as I was waiting in the waiting room for the doctor to give me some other CT scan results, I started Googling hematologists and I noticed the word oncologist after their titles.

When I got into the doctor again, that day, I said, "Are you telling me that I have cancer?" And he said, "Well, we don't know that for sure. I'm going to send your blood to the hospital where they can do more detailed testing and we'll find out what it is." But I basically knew then that it was something very serious. 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. Even then, I didn't know what that meant. I have a friend who has had leukemia, chronic leukemia for about 20 years. All she does is take a pill every day and she leads a perfectly normal life. And so I thought, well, leukemia, that isn't so bad.

Esther Schorr:
And I understand that-

Elaine Barr:
Then I started reading up on AML and learning more about it.

Esther Schorr:
Okay. That was in January. I understand that Denny, your reaction initially when hearing acute myeloid leukemia was a little bit different, that maybe calling it acute tipped you off on something, huh?

Denny Barr:
Yeah. That's kind of a keyword in any descriptive title of anything. If it's acute, they could say serious use other words to describe it. Acute means you got something there.

Esther Schorr:
Do not pass go.

Denny Barr:
Yeah. You need further analysis and care.

Esther Schorr:
Okay. So you both then had the reality that this was not the chronic form of leukemia that your friend had, Elaine, but something that needed to be attended to right away.

Planning a Hospital Stay for AML Treatment

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.

Esther Schorr:
What was your reaction and your reaction, Denny? What did you make of that?

Denny Barr:
It seemed like a lengthy stay, initially 30 days. My operation and recovery, actually there were two operations during the time I was in the hospital. I was out of there in eight days. So 30 days, I'm going, "Wow. I don't know what to make of it." They drop the bomb on you and they tell you what you have to do and then what are your choices? And the answer is you don't have any choices, so let's go.

Esther Schorr:
Then you went into the hospital and were there 41 days in the hospital and got the standard treatment, but something happened. What happened?

Elaine's AML Treatments

Elaine Barr:
Right. I had the 7+3 chemotherapy regimen. Then they did a bone marrow biopsy and my blasts went from about 80% down to, I think it was 40%. The standard treatment had not worked well enough. It had reduced the blast, but not to the point where I'm ready to have a transplant. They told me it had to be less than 10% blasts. Then they decided to put me on a different chemo regimen called MEC. MEC stands for the three types of chemo treatments that you get. That was very intense. I had much worse side effects from that than I had had from the 7+3. I was in the hospital during all of that.

That was all infusion. Then they could tell from ... They were going to do another bone marrow biopsy, but they could tell from my blood counts that I still had blasts in my circulating blood after the MEC. Then they decided to put me on another treatment regimen, which includes shots of azacitidine (Vidaza) and pills of venetoclax (Venclexta). It's only a year and a half old. After I had my first, I believe I had two rounds of the Vidaza and taking Venclexta and they released me from the hospital. My counts were looking pretty good, but they wanted to have me visit the Mayo Clinic first because they knew that there was a clinical trial going on at the Mayo Clinic that I would be eligible for. They were concerned that if the Vidaza and Venclexta didn't work, that they would need to have me go into the clinical trial.

Esther Schorr:
Denny, all of this is going on with Elaine. What are you making of all of this? How are you coping with what's going on?

Denny Barr:
Well, there...It started out okay, but then 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." I had my questions about, and this is hindsight, of why they used those first two cycles of chemo, rather than going with the 2Vs, because those 2Vs did the trick.

Esther Schorr:
Sometimes they don't know that ahead of time, though. That's the unfortunate thing.

Denny Barr:
Well, yeah, I know that. I know that, but that puts the patient through a month's worth of hell. So now, this is all hindsight, but I've heard now and we've heard that instead of doing 7+3 right out of the gate, they're going to go to the 2Vs, because the doctors both at Mayo and Methodist Hospital are absolutely elated about the results of these two drugs on this disease. But anyway, going back to your original question, how did I feel? I just was there to do what I had to do.

Elaine Barr:
Every day.

Denny Barr:
Every day.

What's it Like Being a Care Partner for Someone With Acute Myeloid Leukemia?

Esther Schorr:
Well, and that is the burden and the blessing for a patient of having a caring partner. I mean, did you get any support during the time Elaine was in the hospital?

Denny Barr:
I went through my ordeal, and you don't have choices.

Elaine Barr:
You did have a lot of support, though, during that time.

Esther Schorr:
Yeah. Were there people there to support you, Denny, while Elaine was in the hospital?

Denny Barr:
Oh, yeah, yeah.

Esther Schorr:
So how did that work?

Denny Barr:
Family. Friends.

Elaine Barr:
A couple of his friends had him over for dinner a few times while I was in the hospital. This was before the coronavirus got really bad here, so people weren't social distancing then.

Denny Barr:
No, it was more of a normal society.

Esther Schorr:
Well, and I ask about that because care partners, caregivers are often overlooked in this whole process, and just like the patient needs the support, it's the loved ones that need support, too, because it's a difficult time. There are so many unknowns, and if you're not used to being on your own and there's stuff that needs to be done that you don't normally do ... So did you arrange to have family, or did they offer to help out? How did that happen?

Denny Barr:
They just stepped up. "Is there anything you need?"

Elaine Barr:
Yeah. They brought food over.

Bone Marrow Biopsy Results

Esther Schorr:
So okay. So Elaine, let's pick up from where we were. You then were on this Venclexta and Vidaza. What happened then?

Elaine Barr:
So I was home from the hospital, and they gave me another bone marrow biopsy. The doctor here at Methodist Hospital called me and said, "I got your results, and I'm ecstatic." That was his word.

Esther Schorr:
Great.

Preparing For a Transplant

Elaine Barr:
I said, "Well, if you're ecstatic, I'm really ecstatic." 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." Then the Mayo Clinic told us that they were scheduling the transplant for June 17th. Of course, they had to have me go through a lot of tests beforehand. So they started scheduling all of that.

We went to the Mayo Clinic. We went down to Rochester, Minnesota on June 1st, and we had rented a place to stay for 100 days because that's what they told us to expect. I had all kinds of testing done. I had scans and blood tests and a coronavirus test and EKG, electrocardiogram. I mean, they just ran me through the wringer.

Esther Schorr:
Then you have to do some kind of matching, right? With a transplant, you need a donor.

Elaine Barr:
Yes.

Esther Schorr:
So what happened there?

Elaine Barr:
So prior to me even going down to Rochester, they had tested my oldest sister and my brother. My brother wasn't a very good match, but my sister was a ten for ten match.

Esther Schorr:
So, Elaine, we understand your sister was a ten-ten match, but what happened?

Elaine Barr:
Right. Well, she had had swelling in one of her legs, and she thought it was from doing a lot of gardening. She had had it checked out here in the Twin Cities. They had done a CT scan and an ultrasound, and they thought it was just muscle inflammation. But she found a mass behind her knee. So she called the Mayo Clinic and told them about it and said, "I don't know if this is going to pose a problem or not, but I just wanted you to be aware of it." They said, "We want to do an MRI, and we want you to come down here for that." So she went and had the MRI, and then they said, "Okay, we did find that mass behind your knee. We want to do a biopsy."

Esther Schorr:
Oh, boy.

Elaine Barr:
So she had a biopsy done, and they told her that she has diffuse large B-cell lymphoma.

Esther Schorr:
As if you didn't have enough going on in your family.

Elaine Barr:
Right.

Esther Schorr:
Goodness.

Elaine Barr:
So she was no longer going to be my donor, obviously. Now she's being treated at the Mayo Clinic with a chemo regimen on a weekly basis.

Esther Schorr:
We hope she does well, for sure.

Finding a Donor on Be the Match

Elaine Barr:
Yes. I hope so. But 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.

Esther Schorr:
Wow.

Elaine Barr:
One of them has agreed to be my donor, and they're going to start harvesting her cells on July 7th.

Esther Schorr:
All of this is going on with it looked like there was a great match for Elaine and Denny. How did you find out and when did you find out that that match was ... that her sister was not going to be able to do this?

Denny Barr:
Well, I found out through Elaine and her communications with her sister, and it was, again, another setback. Life is not a straight line.

Esther Schorr:
No.

Denny Barr:
So anyway, we found out about it, and there was some hesitation to really say, "Well, she's out," because we had to find out from the Mayo definitively that she had this lymphoma disease. They basically had to rule her out. I mean, she was a sibling donor. That was a dream.

Esther Schorr:
So you had to wait a while until-

Denny Barr:
We had to wait. We had to wait some time to make sure that ... She had to go through all of these tests and be ruled out, but as Elaine told you before, the doctor had the foresight at the Mayo to have a backup donor. I understand through the grapevine that this is kind of normal procedure for these types of transplants is to have a backup in place.

Esther Schorr:
Because things happen way out of your control.

Denny Barr:
That was very relieving to know. On one hand, it was tough on Linda, but it was ... I'm sorry.

Esther Schorr:
No, it's a very ... Don't apologize, Denny. This is a very difficult story to tell, and you guys have really been through it between you, and Elaine, and Linda, your sister.

Elaine Barr:
Yes.

What is Life with AML Like During the Coronavirus Pandemic?

Esther Schorr:
Medical science is —it's as much an art as a science. There's a lot that they know and there's a lot they don't know and can't anticipate.

So, I have a question. We are living in the most bizarre time right now with the pandemic. So, you're going through this incredibly crazy journey and there's been lots of ups and downs. How is this working with the pandemic going on and moving around, and how are you managing that?

Elaine Barr:
Well, I have been basically quarantining since the 27th of January.

Esther Schorr:
Oh my goodness.

Elaine Barr:
So, I don't go anywhere except to the doctor's office. I have only seen a couple family members twice, and from a distance. My dad's 95th birthday, and Father's Day, I saw him from his sidewalk outside his house.

Esther Schorr:
I do that with my parents, too. I understand.

Elaine Barr:
So, I really haven't been going anywhere. I really haven't been seeing people. I keep in touch through social media, texting, phone calls, that type of thing. Denny, I'll let you talk.

Esther Schorr:
Denny, how are you navigating this?

Denny Barr:
Well, we've had ... My sister has helped us with groceries. My brother ... When we're going to be in, our house is going to be empty here in Bloomington, and we're getting people to either come over here and stay for a little bit, or check on the house. My brother's going to do the lawn mowing and the yard work. So, we've been kind of planning this. We've known that it's going to be quite a while once we get rolling here. So, we have made plans to have people step in, and I've got a couple of things ... I've got my scans in early August where I'm going to have to leave, so my sister is going to come down and stay with Elaine for those two days. Then, believe it or not, I have a golf tournament later on in August that I have. I'm one of the defending champions.

Esther Schorr:
You've got to do it, Denny.

Elaine Barr:
That's what I said.

Esther Schorr:
It's vanity. You got to do it.

Denny Barr:
Well, I’m going to blow my own horn here a little bit.

Esther Schorr:
Absolutely.

Denny Barr:
We won the state Four-Ball Masters Division last year.

Esther Schorr:
Wow.

Denny Barr:
So we're defending champions, so I cannot miss that.

Esther Schorr:
You're cool with him doing that, Elaine?

Elaine Barr:
Yes. I want him to.

Esther Schorr:
That's great. Wow.

Denny Barr:
Elaine is going to have one of her good friends ... She can describe Marlene a little further if she likes, but Marlene is a very good friend of ours. Marlene is going to come down and stay for a couple of days with her. The doctors are okay with that.

Esther Schorr:
Well, it sounds like you all, despite all of this, are very blessed with a great support system. I don't know that everybody has that, so that is a blessing. I'm going to ask what might be, I don't know if it's a touchy subject, but we'll be getting to the end here. There's got to be some financial implication to all of this medical stuff going on. So, how are you going to manage the financial part of this? Are the medical institutions helping with that? Are the pharmaceutical companies helping? How does that work?

What Are the Costs Involved With Treating Acute Myeloid Leukemia?

Denny Barr:
Elaine, you go ahead.

Elaine Barr:
My health insurance is covering 80% of the expenses at this point. All of my out of pocket has been met. So, they're covering 80%. We pay 20%. I was very surprised to find this out but they're also covering our lodging and transportation expenses while we stay in Rochester. So-

Denny Barr:
Up to $10,000.

Elaine Barr:
Right, ...

Esther Schorr:
Wow.

Elaine Barr:
... which is a huge blessing.

Denny Barr:
Yes.

Elaine Barr:
I mean, because I wondered about that, too. Neither of us are working now. I am retired, but I'm not getting any kind of Social Security or ... I'm, basically, not getting any income. Denny is getting Social Security, but for not having any real income anymore I was concerned about that. Luckily my insurance has been great.

Esther Schorr:
Well, that is a struggle for people, I'll say, in our age bracket. As you get to the point where you're either not working or working very little, the expense of these treatments can be huge. So, that's why good insurance and our whole insurance system needs to be looking at those things.

Elaine Barr:
I agree.

Esther Schorr:
So, in all of this you've been ... It's like you said it's been an up and down. Denny, are you hopeful that this is going to work?

Denny Barr:
Yes, because 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."

Esther Schorr:
It does matter.

Denny Barr:
He said, "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.

Esther Schorr:
Well, it sounds like your husband isn't exactly a slouch either.

Elaine Barr:
No.

Esther Schorr:
He's been through it, it sounds like golf champion, and you're a walker. So, Elaine, are you as hopeful as Denny is?

Elaine Barr:
I am hopeful. I do, 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 and that's probably my biggest fear, but I am trying to stay positive. As both of us have done through both of our journeys last year, and this year, 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 mean, 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. So-

Denny Barr:
Could I add something ...

Esther Schorr:
Of course you can.

Elaine Barr:
Sure.

Denny Barr:
... to the mix? Going through my ordeal, and also Elaine going through her ordeal, I think one of the things that helped me ... I know I can speak for myself, I think Elaine would probably concur that having a Caring Bridge site ...

Elaine Barr:
Yes.

Denny Barr:
... was helpful.

Esther Schorr:
Can you explain what that is? I know what it is but I'm not sure other people do.

Denny Barr:
It’s a website, you go on CaringBridge.org and you establish your site and what this does is because we have a lot of friends that want to know what's going on.

Well, this is a little bit selfish, but I do not want to keep 200 or 300 people up-to-date on everything that's going on with individual emails or even a group deal.

This is very nice for people who want to tell people about their situation, and I found it very therapeutic to do this, to write.

How Can You Help Someone Who is Going Through Leukemia Treatment?

Esther Schorr:
So Denny and Elaine, many of us have a friend or a family member, or we just know somebody who is going through or about to go through the kind of journey that you're on with a serious condition where it needs treatment. What would you suggest to somebody who wants to help but doesn't know how? What would you suggest they do?

Elaine Barr:
Well, personally, for me, having people reaching out to me, asking how things are going, wanting to have a Zoom call once in a while because I'm not able to see people in person, that really lifts my spirits. Even if it's just a text message or an email.

I had a friend who was texting me jokes every day when I was in the hospital and people leaving comments on the CaringBridge site was always really uplifting and so I really appreciated all of the personal communications that I got from people because I wasn't able to be out seeing people and so just staying in touch was really important.

I know Denny will agree with this. We often had people volunteer to bring food over, which was very much appreciated or helping out like doing the grocery shopping for us or whatever they could do. It's hard to ask people for help but if they volunteer it, I kind of started saying, "Yes. That'd be great. If you'd be willing to make a batch of chocolate chip cookies for me, we would love to have that."

Esther Schorr:
Not a bad deal.

Elaine Barr:
We won't turn it down. So just simple things like that. That would be my suggestion.

Esther Schorr:
Okay. No, those are great. Denny, what about you?

Denny Barr:
Well, on the caregiver's side, I would suggest to any caregiver to be dedicated but also diversify your activities. Don't let this consume you totally. Be dedicated but you need to have a breath of fresh air once in a while and it helps the mental side.

I'm not saying abuse the situation by any means, but for instance, I'll go back to my golf tournament. That's a little bit selfish, but it's more for me getting of the breath of fresh air, act of normalcy because this has been going on since January 25th of 2019.

Esther Schorr:
Right. That's a long time. So that's how you take care of yourself. Any advice for your friends and how they can support you through this, other than playing golf with you, of course, and not beating you, right?

Denny Barr:
Your friends, your true friends will appear and they will help. The rest, your acquaintances, probably not so much but your friends and family they'll be there.

Esther Schorr:
I just, I just want to thank both of you for sharing. At least this part of your story with us. I am sure they're going to be some challenges ahead. As you said, it's a little bit of a rollercoaster, but we want to hear how this goes and you got to know that they're going to be a lot of people who, by your sharing this story, they're going to be rooting for you and then I just want you to look at this as an ongoing partnership. I feel like with me, with Patient Power, with other patients who are really going to benefit from understanding what it's like to go through this and also to see two people who are working together to go through this together, support each other and how important it is to not feel like reaching out for support is a bad thing. You have to do that.

Denny Barr:
You have to.

Esther Schorr:
You guys are great role models for that. So I wish you both, I wish you well and I'm going to want to know what happens.

Elaine Barr:
Thank you.

Denny Barr:
We will keep you abreast.

Esther Schorr:
Thank you. This is Esther Schorr with Patient Power and remember knowledge can be the best medicine of all.

 


Recommended Programs:

View next