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Finding Hope in the Changing Landscape of AML

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Published on July 2, 2020

Finding Hope in the Changing Landscape of AML

Kathy Andrews, diagnosed with acute myeloid leukemia (AML) in March 2020, shares how after a failed induction she found hope and a new lease on life with a more targeted therapy. Here, Kathy and her daughter Ariane share their story, including treatment during the COVID-19 pandemic and how genomic testing made a difference in care. Watch as they explain why AML doesn't have to be as scary as it looks on paper and urge others to seek out information about treatment options.

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Transcript | Finding Hope in the Changing Landscape of AML

Andrew Schorr:
Hello, and welcome to Patient Power. I'm Andrew Schorr in Southern California, but joining me from Duluth, Minnesota is Kathy Andrews and her daughter Ari Frojd. And this is a story of mom, Kathy, being quite frankly, near death from AML in March of 2020. And now as we record this in June, Kathy, how are you doing today? How would you describe how you're doing?

Kathy Andrews:
I'm doing well. I'm doing very well.

Andrew Schorr:
Doing well, but Ari, your mom got so sick. She was in hospice for several weeks, right?

Ariane Frojd:
Correct. Yes, yeah.

Andrew Schorr:
And you're a nurse. So, this is literally somebody coming back from the brink of death, right?

Ariane Frojd:
I would have to... Yeah, totally. Yes.

Andrew Schorr:
Wow.

Ariane Frojd:
Yes.

Andrew Schorr:
Okay. Let's hear how this went from in this changing world of better treatments for AML going from really fearing death to having a life. So, Kathy, going back to late March, you'd been to your doctor. I think you weren't feeling well. You went a second time. The doctor did a blood test because you had swollen nodes and bleeding gums. And you worked in a dental office. You knew about bleeding gums. And what did that blood test show? And what did the doctor say?

Kathy Andrews:
The doctor called me and said, "You have leukemia and it is very urgent that you get down to the hospital. You are at risk for infection and frankly death."

Ariane Frojd:
Yeah.

Kathy Andrews:
So I had to leave my home with my husband and rushed down to the oncology floor at our local hospital.

Andrew Schorr:
Right. And there you go with your husband, Greg of 37 years.

Kathy Andrews:
Yeah.

Andrew Schorr:
And then because of the COVID pandemic, the hospital says, "Well, Greg, you can't stay." So you're there all alone thinking this is the end.

Kathy Andrews:
Yes. It was very scary.

Andrew Schorr:
No, I can't even imagine that. Ari, you're at work, not in Duluth, but more towards Minneapolis. You're a nurse. So you get word that mom has acute leukemia. Were you familiar with what all this was?

Ariane Frojd:
I wasn't, my dad called me and said, "Mom was diagnosed with this," leukemia. We didn't have an AML name yet, but I didn't know what AML was, really wasn't familiar with leukemia. Did a short Google — my dad told me not to and I did anyways. And it was scary. I had to leave work and fly home or drive up to Duluth and... There's and there wasn't much I could do because of no visitors, but I still felt I to be here as a support person for my mom and my family.

Andrew Schorr:
So, Kathy they start sort of the standard chemo for AML. And at some point they do what is so wise now, genomic testing, is there an identifiable gene that is driving your AML? Took a couple of weeks, right? So meanwhile, you're getting pretty sick and you wanted to leave the hospital. Ari, Kathy wanted to come home, right?

Ariane Frojd:
Yes. So she did that 7+3 standard induction that they usually will do for all AML and her testing came back for three identifiable mutations, two of which, actually as we have seen are targetable. So the DNMT3A mutation that she has, decitabine, which is a newer drug — I think 2017 — is targetable for that. And then she had another mutation IDH1 that also has a very new pill that is showing success.

Andrew Schorr:
So let's just get a little, and you're a nurse, so a little clinical information. So your mother had a bone marrow biopsy at the outset pretty early and it showed 87% blasts. Not good, not good.

Ariane Frojd:
Yep. Actually, she started with 80% and on day 14 showed 76%.

Andrew Schorr:
Oh, okay. So, but still not much progress. It was sort of a failed induction if you will.

Ariane Frojd:
They called it a failed induction, yeah.

Andrew Schorr:
So, okay. But then much later after all this more targeted treatment started, what did a bone marrow biopsy show as far as the percentage of blasts?

Ariane Frojd:
Sure. So before she came home, they did a three day round of decitabine, which was shown to maybe help with that DNMT3A mutation so upon a second bone marrow biopsy, probably six weeks after diagnosis, her blasts actually went down to 3% with that second bone marrow biopsy.

Andrew Schorr:
Wow. Okay.

Ariane Frojd:
Yep.

Andrew Schorr:
So, Kathy, I understand you were in hospice for a while and there's a lot you don't remember. Okay, a lot is... You were just out.

Ariane Frojd:
Yeah.

Andrew Schorr:
Things have really turned around and you're in an age where now you're getting much more targeted treatment and it's starting to make a difference. How do you view this whole experience? You'd been healthy your whole life. And then this stuff comes out of nowhere. You're laid low, as low as you could be. And now you're not. So how would you describe this?

Kathy Andrews:
I would describe it, the day we found that out, we all cried, and we felt there was a miracle. And even the doctors I think were surprised and it's nothing short of a miracle.

Ariane Frojd:
Yeah. The day that we found out that there was actually only 3% blasts left, as opposed to 74% a month prior was just so crazy.

Andrew Schorr:
Kathy, do you see you're on a new lease on life, a second life-

Kathy Andrews:
Yes. Every single day is a gift and my family, my friends, all my support people, work people, it's amazing. I look outside it's... I can eat, I can walk, I can listen to birds. It's amazing. Yeah. New lease on life, for sure. I don't take a thing for granted.

Andrew Schorr:
Right. So Ari, what do you want to say to people who may be watching this Patient Power program where a family member is diagnosed with this acute leukemia and just thinks, "That's it," and they don't know about this new age of targeted therapies. What would you say to them to have hope?

Ariane Frojd:
I would just say don't ever give up hope, continue reading, researching, educating yourself. A really critical thing for me was joining those Facebook AML support groups, reading other people's stories. I learned a lot of information about all these new drugs, literally just through Facebook. Also, I would say never give up hope, educate yourself, ask questions always, get a second opinion. It's just all about research, you know what I mean? Its knowledge is power and AML doesn't have to be as scary as it looks on paper.

Andrew Schorr:
Right. Well, thank you so much. So Kathy, we wish you just continued improvement, a new beautiful life with your children and your family, and back to work at the dental office, and just getting back to life. And Ari-

Ariane Frojd:
Yeah.

Andrew Schorr:
Being a nurse, you had to learn about AML-

Ariane Frojd:
Yes.

Andrew Schorr:
And you dove into it and I think supporting your mom, and it sounds like she's gotten good care. What I would just say to our viewers is look, things have been changing in AML, which is not a common condition, but we're so blessed in that AML there'd been no progress for 40 years and then there's a flood of progress, and you're looking at Kathy where that makes a difference. Right there. So let that be you if you have a family member and hopefully with the support of people like Ari. Ladies, thank you so much for being with us. Kathy, all the best to you. Ari, thank you for being the wonderful daughter that you are and for sharing your story together on Patient Power, all the best.

Ariane Frojd:
Thank you.

Kathy Andrews:
Thank you.

Andrew Schorr:
I'm Andrew Schorr, I love these inspiring stories and want to make sure that's modeled by so many of you, so you get what's right for you. Remember, knowledge can be the best medicine of all.


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