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Mapping Myelofibrosis Logo

TEXT ON SCREEN:
Mapping Myelofibrosis Logo

GSK presents
Mapping Myelofibrosis
A Caregiver’s Journey

Jasmine Sahni, Host

JASMINE SAHNI:
“Hi everyone. My name's Jasmine Sahni. I'm a global scientific director with GSK.”

TEXT ON SCREEN:
Cheryl Petruk, Myelofibrosis Caregiver and Advocate

JASMINE SAHNI:
“Today, joining me, is Cheryl Petruk. She’s the founder of the Canadian MPN Research Foundation. We’ll be talking a little bit about myelofibrosis overall, as well as the impact on caregivers and what that’s like for the families of loved ones suffering with myelofibrosis.”

“So, Cheryl, thank you again for joining me today. Can you tell us a little bit more about your husband's journey and what it was like for you from the caregiver aspect?”

CHERYL PETRUK:
“Absolutely. So in 1991, my husband was diagnosed with essential thrombocythemia. We were actually trying to conceive to have children, and he had a chest pain. So I urged him to go to the doctor, and he was then diagnosed with having too many platelets in his blood. Essential thrombocythemia. So from then he sought, a second opinion from a hematologist, and the hematologist literally told us, we don't know much about this, even though it had been around for many years.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“It was a blood disorder back then in 1991. And he said, well, you can either live your life, watch and wait and we'll monitor your blood or we'll put you on a drug to suppress the bone marrow. So my husband, Eugene, decided to live his life. We wanted to still have more children. But we did everything that we needed to, just in case.”

JASMINE SAHNI:
“Mm-hmm.”

CHERYL PETRUK:
“And so, we lived our life and, you know, he, we thought he was pretty asymptomatic. He had his blood checked every three months for other medication that he took. And then in 2010 the doctor phoned us, the GP phoned us at home on a Sunday afternoon and said, I think you need to come in and see me.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“And within three days, we were in to see an oncologist at the Cross Cancer Center in Edmonton. And within the hour he said to us, he said, I, I know what you have.”

TEXT ON SCREEN:
About Myelofibrosis & MPNs

JASMINE SAHNI:
“For folks joining us who aren't too familiar, so just to level set, so myelofibrosis, it's, it's a rare blood cancer, a rare cancer of the bone marrow.”

CHERYL PETRUK:
“Yes.”

JASMINE SAHNI:
“It's in a family of diseases called the MPNs. So your husband was initially diagnosed with one form of MPN, and at that point it wasn't even clear that it was actually a cancer.”

CHERYL PETRUK:
“We were never told it was a blood cancer. We were told back in 1991 that it was a blood disorder.”

JASMINE SAHNI:
“Mm-hmm.”

CHERYL PETRUK:
“And that you could live a long, long life with it. And that they saw it mostly in older people.”

JASMINE SAHNI:
“Mm-hmm. Retrospectively, like knowing what you know now, what were some of the signs that were signs of progression that may have seemed ordinary at the time? Or-.”

CHERYL PETRUK:
“You know, fatigue being one of them. That's probably the biggest one. You know the early satiety. You know, we were both trying to lose weight and his was coming off a lot quicker. And I would look at him and go, "Why are ... you know, we're eating the same things. You're losing more weight than I am and-.”

JASMINE SAHNI:
“Frustrating.”

CHERYL PETRUK:
“Frustrating. Absolutely. And you know, so the fatigue and the weight loss, the early satiety. He literally, you know, as he transformed from ET to myelofibrosis you know, the fatigue. He had a desk job, he, you know, he worked in an office. So it wasn't like he was extremely active, but he would come home and you know, be really fatigued, not being able to do a whole lot.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“The early satiety, you know, he couldn't eat a lot because his spleen was growing.”

CHERYL PETRUK:
“You know, he looked and, you know, most people when you lose weight, you lose, you know, that belly fat and, and whatnot. But his wasn't, his spleen was growing. It was literally the size of a, of an NFL football. He looked nine months pregnant, you know, in.”

JASMINE SAHNI:
“I see.”

CHERYL PETRUK:
“In the very end. And we just couldn't put our, you know, like, is it too much stress? Is it this, is it that. You know, he just felt like he said, but I feel like I have a knot. You know, something pushing on my stomach. So, yeah, absolutely. There were signs, but we didn't know that those were signs of progression at all.”

JASMINE SAHNI:
“I see. And over that time from when he was diagnosed with myelofibrosis, I mean, I in the beginning, I assume those changes in signs were slowly evolving you know, compared to, you know, 10 years later.”

CHERYL PETRUK:
“Absolutely.”

JASMINE SAHNI:
“Okay.”

CHERYL PETRUK:
“Absolutely. So, yeah. You know one of the other signs that he had was he had a lot of bruising all over his body. And so very bad, eggplant purple bruises. And, you know, his doctor said, oh, you know, your muscles, maybe they're just tearing or maybe there's something happening.”

JASMINE SAHNI:
“Oh, that was happening before the actual myelofibrosis.”

CHERYL PETRUK:
“Absolutely. Or, you know, in the transition when he was progressing, before it was actually diagnosed that he had progressed.”

JASMINE SAHNI:
“I see.”

CHERYL PETRUK:
“To myelofibrosis.”

JASMINE SAHNI:
“So then how many, how long after did you, or did he feel the enlarged spleen and some of the other signs and symptoms?”

CHERYL PETRUK:
“Oh, continually. So from, in 2010 when he was diagnosed with myelofibrosis.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“Yeah. The spleen got larger. You know every time he went to the clinic visit, the doctor always measured his spleen. And it, you know, in the end it was like 29 centimeters. 2010 was kind of that, that turning point. And he was good till about 2014.”

JASMINE SAHNI:
“Okay.”

CHERYL PETRUK:
“Where the hematologist said, you know, let's just watch and wait and monitor, um, monitor this. Because at that point, he wasn't on any medication, in any way. And so.”

JASMINE SAHNI:
“For the anemia you mean?”

CHERYL PETRUK:
“For anything. I always looked at him and when we left the hematologist and said, you know what, I consider this a win. When he said, see you in six months, or see you in, you know, whatever timeframe.”

TEXT ON SCREEN:
Patient & Caregiver Perspectives

JASMINE SAHNI:
“For new patients that you meet, folks who are just getting diagnosed. From a caregiver perspective, what would be your advice to folks who are seeing their loved ones or, you know, family members going through this, you know, from your, from your journey with it, what's something that you would, you know, like to impart with them?”

CHERYL PETRUK:
“Absolutely. You know, one of the things I felt it was my job was, you know, not only to be his caregiver, but to be his care partner. And so, you know, attend to his needs, attend to the needs of the, the physical disability or the mental anguish or the anxiety, you know, reassuring him that he's gonna be okay and that we're gonna live a long life. But from the care partner perspective, I felt it was my job to research. I felt it was my job to find out as much as I could about the disease.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“So that we could navigate the journey. And so that was one of the things that I would, or one of the things that I learned that I would give advice to anyone else is, is, you know there's things that we can do as caregivers. And we can make them feel better, or we can make them feel more comfortable in a situation. But from a care partner perspective, it's your job to do all that backend stuff.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“Because the patient is really trying to live their life.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“And they're trying to focus on being well and being healthy and being in that mental spot of living the best that they can. So as a care partner, I felt it was my opportunity or my duty to get all the research, get, you know, find out about the different clinical trials, find out about the different treatments and communicate with the doctor.”

JASMINE SAHNI:
“Yeah. And what were those resources like? Where did you lean to because myelofibrosis 10 years ago, I mean, it's a rare disease, so there weren’t-- the area is evolving, the research is evolving. You know, the science is changing day to day.”

CHERYL PETRUK:
“Absolutely.”

JASMINE SAHNI:
“So I imagine when he was diagnosed, there weren't many resources.”

CHERYL PETRUK:
“There was nothing.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“Absolutely. So in 2014, we actually came together with a group of other patients and caregivers in Canada, and we founded the Canadian MPN Network Patient Advocacy organization because I felt well, and when he first was diagnosed, I would search for people that had the disease because it was like, we felt so alone when we left the doctor's office.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“So I'd find somebody and I would, you know, connect with them and go, “Oh my God, I found somebody else," or "Oh my gosh…" you know, so we really felt it was important to have a community. So we got together with some other folks in Canada.”

JASMINE SAHNI:
“Yeah.”

CHERYL PETRUK:
“Established the network. And today we've got support groups in every city across Canada.”

JASMINE SAHNI:
“So it initially just started off with you trying to find information for yourself.”

CHERYL PETRUK:
“Absolutely.”

JASMINE SAHNI:
“Some people going through similar situations, people to lean on, learn from their experiences, and then it morphed into a foundation that you co-founded.”

CHERYL PETRUK:
“Absolutely. Actually, I founded the, the, Canadian MPN Research Foundation. So as Eugene progressed over, you know, the, his myelofibrosis journey, I said to him, you know, we really need to do more. We need to, and he and I always we did a lot for our community. We did a lot for, you know, the organizations that we worked with, with our children, with our sons, and, and, you know, so that was kind of part of who we were.”

JASMINE SAHNI:
“And you took, what's, what was a very challenging situation that most people probably can't even imagine and turned it into something that can benefit others going through the same present day. So with all of that said, when you have a newly diagnosed patient or a family or a caregiver reach out to you, what, what would you share with them today that you wish you knew, you know, at the beginning of your journey?”

CHERYL PETRUK:
“Well, the first thing I'd say to you, Jasmine, is take a big deep breath, you're gonna be okay. Really, you're going to be fine. Yes, you might have diagnosis with a rare blood cancer, but we've got so many new evolving opportunities for patients and resources for patients. So much more now than we had 10 years ago, or 15 years ago, or 20 years ago when we were first diagnosed. And I say we, because yes, care partners, spouses, families are part of that patient, and we are diagnosed with that disease.”

“And so I would say to you, Jasmine, you're going to be okay. We've got great physicians, we've got great resources, we've got great stakeholders who are invested in helping patients live a better life. Secondly, I'd say, make sure you get a MPN specialist. Get a second opinion. So many patients are diagnosed at the HCP or primary care physician level. And unfortunately, these doctors they don't see this disease very often because it is a rare disease. So, they may put them on watch and wait, or they may discount it and say, oh, it could be this, or it could be that.”

“And, you know, get as much education about the journey that you're on and that you're about to take, whether that's patient support groups, whether that's community support you know, having a physician that you understand and like, and really, will take what they have to say and utilize it to live your best life. Because it’s important that the physicians have a longitudinal basis of their quality of life.”

JASMINE SAHNI:
“Yes. It’s pretty impressive that you just as a family went through this, didn’t really know what was happening, didn’t really have much information available to you, many resources. Now you’ve created not only an organization that benefits patients, now you’ve created an app that could even, you know, evolve the science further. It’s amazing what you’re doing and all the information you’re sharing, sharing your husband’s experience, your experience and what you’re doing with it now. I mean, I, I don’t think anyone can probably thank you enough for it.”

JASMINE SAHNI:
“Well, thank you again, Cheryl. I really appreciated our conversation and it's really these types of conversations that will help us ultimately get ahead together.”

TEXT ON SCREEN:
Mapping Myelofibrosis logo
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©2023 GSK or licensor.
MMLCOCO230001 May 2023
Produced in USA.

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