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Supporting a Partner With an AML Diagnosis

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Published on February 13, 2020

Key Takeaways

Harry and Margaret Kuligofski sit down with Andrew and Esther Schorr to discuss Harry's acute myelogenous leukemia diagnosis. Watch as Harry shares his journey with AML, and how Margaret's observations of her husband's health led to timely treatment.

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Transcript | Supporting a Partner With an AML Diagnosis

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.

Andrew Schorr:         

Hello, Andrew Schorr from Patient Power with Esther Schorr from Patient Power. And we’re in Orlando, Florida and as we travel around we get to meet other couples affected by various illnesses; in our case chronic lymphocytic leukemia and also myelofibrosis, a myeloproliferative neoplasm. And so, our cancers are chronic.

Esther Schorr:            

Yep, yep. For Andrew, chronic lymphocytic leukemia. You were diagnosed… 

Andrew Schorr:

…23 years ago. 

Esther Schorr:            

Yeah, and at that time it was quite a shock. We had two kids, we wanted to have a third child and all of that got thrown in kind of a cocked hat as they say.

Andrew Schorr:         

Right, so we want to differentiate a little bit because I thought I was like dead the next day, and they said, “No, it’s chronic, and you’re going to live a long time.” And here we are 23 years later and that’s been true and I lead a pretty full life. But there’s another kind of leukemia called acute myelogenous leukemia which is a five alarm fire. And so, I want you to meet Harry and Margaret Kuligofski. Did I say it right?

Margaret Kuligofski: 

You did. 

Andrew Schorr:         

From Bushnell, Florida and we’re here recording this in Florida. And so, Margaret, what was going on with Harry in the spring of 2019, April. What was going on for him and his health?

Margaret Kuligofski:

He was very healthy, and then he got the flu, gave me the flu and I recovered from it, and he wasn’t recovering from it. So, I called our primary, and he let him come in that afternoon, and did some bloodwork, and as a result sent us to a hematologist, and then they referred us to Moffitt Cancer Center.

Andrew Schorr:         

Which is the big cancer center here; big research center.. 

Margaret Kuligofski: 

Yes.

Andrew Schorr:         

Okay, so, Harry, your wife gets better from the flu, and you were just dragging.

Harry Kuligofski:      

Yes, it was—I was always tired and just kind of achy, and it just didn’t seem to want to go away. And I was fine before that and it just…

Andrew Schorr:         

…and a golfer and a fisherman. Okay, enjoying your retirement years. 

Harry Kuligofski:      

Yes. Yeah, work in that little shop, and it just hit me pretty hard, because I wasn’t expecting it.

Andrew Schorr:         

Yeah, all right let’s talk what else hit you. So, you go the hematologist. Now, did you know, have a sense of what was going on at that point? When you were referred to the hematologist did the doctors tell you, what did they tell you? 

Harry Kuligofski:      

Not really, our primary said there’s a blood disorder, he didn’t really go into it. I knew that I had immature cells for probably three years, and it was all of a sudden the blood test came up and they were the full blown cells were there, but he really didn’t discuss it. He preferred I go to the hematologist and… 

Andrew Schorr:         

…what’d the hematologist say?

Harry Kuligofski:      

We’re going to get you into Moffitt. 

Andrew Schorr:         

Get you into the big center right away. And did they name the diagnosis?

Margaret Kuligofski: 

Yes.

Harry Kuligofski:      

They did, yes. Moffitt did. 

Andrew Schorr:         

And you get to Moffitt and Margaret, what did they tell you it was? 

Margaret Kuligofski: 

AML.

Andrew Schorr:         

Acute myelogenous leukemia. That’s pretty terrifying. 

Margaret Kuligofski: 

It is.

Andrew Schorr:         

Yeah, and what was your reaction?

Harry Kuligofski:      

I couldn’t believe it, and I just didn’t think you could go from feeling as good as I felt to looking at the end of the line. 

Esther Schorr:            

Well, fortunately, that didn’t happen, but it sounds like it was so important that you had a good relationship with your primary care doctor and recognized it and got you in touch with a specialist. I mean I know that’s very similar to what happened with us. And you know, I think if there’s any message for other people who go through these kinds of things that if there’s any concern whether it’s the care partner that identifies it or a patient that something’s just not right. You know, having a good relationship where you’re not afraid to call your primary care doctor and say, “Look, this isn’t right.” You know, and you get in that conversation and get referred to the right person it seems like that’s critical and here you are today. 

Harry Kuligofski:      

Yeah.

Andrew Schorr:         

Well, let’s talk about today. So, you got to this big cancer center here in Florida, Moffitt Cancer Center, and they I’m sure did other testing to take a look at now we know to look at what version of AML someone has because they’re not all the same. And you were given really state-of-the-art treatment and so, that was just a few months ago. What happened? How’d it work out so far?

Harry Kuligofski:      

So far, the only problems I have right now are I feel a little more tired than I would like to and sometimes a little weaker. But other than that, I can do anything I want to do. They told me, "Just go back and live your normal life."

Andrew Schorr:         

Right, and the treatments that he had were becoming for older people now highly recommended depending upon your version of AML; that’s a drug called azacitidine (Vidaza) and another drug called venetoclax (Venclexta). And Vidaza, is that one was injected in? Is that right?

Harry Kuligofski:      

Yes.

Andrew Schorr:         

But the Venclexta is a pill? 

Harry Kuligofski:      

Yes. 

Andrew Schorr:         

So, okay, are you taking any medicine now?

Harry Kuligofski:      

At this moment I am, yes. I’m taking the Venclexta.

Andrew Schorr:         

Venclexta you’re still taking?

Harry Kuligofski:      

And I just finished up the Vidaza, but that’s something that I’m on a 28-day cycle, and I’ve got to do that every month. There’s no stopping it.

Andrew Schorr:         

Right, but the thing is you’re back home. 

Harry Kuligofski:      

I’m back home.

Andrew Schorr:         

You’re with your wife and you’ve been married how many years?

Harry Kuligofski:      

Fifty-six.

Andrew Schorr:         

He says 56.

Esther Schorr:            

There’s disagreement here.

Margaret Kuligofski: 

Well, it’ll be 56 next month.

Esther Schorr:            

So, she’s saying, “Don’t rush it.”

Margaret Kuligofski: 

Close enough. 

Andrew Schorr:         

But here’s the thing. You all hopefully, have many more anniversaries to look forward to. Do you have a plan for this anniversary coming up next month? You should at least go out for a great dinner. 

Harry Kuligofski:      

Oh, we’ll probably do that.

Andrew Schorr:         

Yeah, at least... 

Margaret Kuligofski: 

...at least, yes, we will. 

Harry Kuligofski:      

Making plans sometimes just don’t work.

Margaret Kuligofski: 

Make the reservation, Margaret.

Andrew Schorr:         

Margaret, as a care partner, what would you say to people watching where their loved one isn’t feeling well, maybe in their 70s to get checked? You know, you did not pass go, you said—what recommendation would you make to them? 

Margaret Kuligofski

Well, I think you have to be tuned into that person and understand that there’s a problem. 

Andrew Schorr:         

And then get help. 

Margaret Kuligofski: 

Right. 

Andrew Schorr:         

Get help. What would you say to patients, Harry as far as—first of all, having hope. What would you say? 

Harry Kuligofski:      

It’s there. There is hope there and don’t give up and just ignore it. Go after it.

Andrew Schorr:         

Okay. Do me a favor, since this lady’s so – give her a hug, okay? All right. Well, thank you so much. I’m going to give you a hug. 

Esther Schorr:            

Now, you’re making me cry.

Andrew Schorr:         

All right. Listen, with these cancers it’s a family affair as you can see. So, if you’re the care partner, speak up; if you’re the patient speak up. Get to the right care and hopefully in Harry and Margaret’s case and Esther and Andrew’s case, hopefully we have a long life, we’re going to celebrate every day, celebrate anniversaries and thank God for modern medicine that’s making that possible.In Orlando, not too far from Bushnell, Florida with Harry and Margaret and with Esther, remember…

Esther Schorr:            

…knowledge can be the best medicine of all.

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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