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CML Patient Shares Her Story to Provide Hope for Others

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Published on March 11, 2020

Key Takeaways

  • The survival rate for CML has improved significantly in recent years—patients have reason to be hopeful for the future.   
  • No two cancer journeys are alike, but by joining a support group you can connect with others who understand your journey.  
  • The BCR-ABL gene is found in most CML patients and is often used to confirm the diagnosis.

“I find that other people’s stories are so powerful, and they’ve helped me a lot, so I hope that my story can provide a little hope for somebody…a little context for what they’re dealing with,” says chronic myeloid leukemia (CML) patient advocate Skye Davidson, who joined Patient Power via webinar from Sydney, Australia.

Diagnosed with CML in July 2019, Skye discusses her diagnosis, her current treatment regimen, the powerful role support groups have played in her CML journey, and why she is grateful for the life she is living. Watch now for Skye’s uplifting story and positive outlook.

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Transcript | CML Patient Shares Her Story to Provide Hope for Others

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.

Rebecca Seago-Coyle:         

Hi. I'm Rebecca Seago-Coyle, and I'm with Patient Power, and I'm here with Skye Davidson, who's in Sydney, Australia. Thanks for joining.

Skye Davidson:        

Hi, Rebecca. Thanks for having me.

Rebecca Seago-Coyle:         

So, Skye, tell us a little bit about your diagnosis. You were diagnosed with CML, which is chronic myeloid leukemia. Is that correct?

Skye Davidson:        

Yeah, that's right. So, I'm relatively newly diagnosed. I was diagnosed in July of 2019, and actually I've been sick a lot this year, because I have a young daughter who's just turned 3, and she's at that age where she just brings everything home from daycare. So, this year, I've had the flu twice. I had a cold/cough that turned into pneumonia, and I've sort of had every other thing that she's brought home.

So, I'd been going to the doctor quite frequently, and in one blood test, it picked up high vitamin B12, which was a bit weird. So, we were just sort of checking on that. And I don't think that had anything to do with the condition that I was ultimately diagnosed with, but it meant that I was going in for regular blood tests. So, after I had the pneumonia, I went in for another routine blood test, and because I had been so sick, everything was just out of whack. So, my white cells were just quite high, my platelets were high. My inflammatory markers were high.

But whoever the pathologist was looked a little bit deeper, and they noticed that there were some things in there that weren't supposed to be there that were indicative of chronic myeloid leukemia. So, I had the definitive test, which is the BCR-ABL test to see if that chromosome was there, and that came back positive, so that meant that I did have CML. And then, to get the ultimate sort of diagnosis to see what phase it's in, I had to get a bone marrow biopsy, and that confirmed that I was in the chronic phase of chronic myeloid leukemia.

So, that was my sort of diagnosis journey from, I guess, a technical perspective. But yeah, I found out because I was just going in for regular blood tests. And I think if I hadn't had the pneumonia, they probably wouldn't have looked further into the blood results. And I'm not sure if those sort of, bad things that were in there would have actually been in there, but I'm not quite sure. 

Rebecca Seago-Coyle:         

Interesting. So, do you have a family history of cancer?

Skye Davidson:        

So, my sister had breast cancer. She was diagnosed at 31, and she's since made a full recovery. We celebrated her five-year cancer-versary with a family reunion in Hawaii last year, which was great. 

Rebecca Seago-Coyle:         

Wonderful. Yes. 

Skye Davidson:        

I'm really proud of her for the journey that she's been through, but her journey was very different from mine. I think every patient journey is different. It doesn't matter what sort of condition you have. Even if you have the same condition as somebody, the journey's still going to be relatively different.

Rebecca Seago-Coyle:         

I completely agree with that.

Skye Davidson:        

Yeah. So, she had breast cancer and has made a full recovery. My grandmother also had cancer, and she ultimately passed away from that cancer. So, it started as breast cancer and then came back in the pleura of her lungs in her 70s. Yeah.

Rebecca Seago-Coyle:         

I'm sorry to hear that. Yeah, that is rough. I guess what I was getting at, too, is you weren't really expecting to be diagnosed with CML, correct?

Skye Davidson:        

Yeah. I don't think anybody is expecting to be diagnosed with cancer. It would be a really sad outlook on life if you're expecting a cancer diagnosis around the corner. So, no, it did sort of come out of the blue, and it was something that I had never heard of before because it's relatively rare. So, it's been a big learning experience, for me, and I've been doing so much reading.

And I actually, in the grand scheme of things, feel incredibly lucky that this is the cancer that I got, because 20 years ago this was a death sentence. People would die in three to five years with CML. And that took a while to get my head around, because now it's not the death sentence, and my doctor and my hematologist, when I was diagnosed, were actually quite positive about it, because it has a really good prognosis now. So, people who have CML live as long as the general population.

So, the treatment is just a pill every day. Some people take different treatments, but mine is dasatinib or Sprycel, which I take once a day, and that's it. So, the only thing that I have to deal with is the side effects from that. I haven't had to go through chemo or radiation or anything like that, and the pill is working incredibly effectively.

So, when I was first diagnosed, my leukemia cells, or my BCR-ABL cells were at 20 percent. Within six weeks, they'd gone up to 100 percent. And then, after less than three months of treatment, they were back down to 0.84 percent, which is remarkable. It was so good to get those results, because I assumed that the treatment was working, but I didn't know for sure until I got the results back. And that was a really happy day, because it was a big mental hurdle to get over to say “Yes, this treatment is working. Everything's going to be just fine.” And I'll get tested again in a couple of weeks, and I expect that that number will continue to decrease. 

Rebecca Seago-Coyle:         

So, you mentioned that you didn't have to do chemo or radiation, and your treatment plan is really just a pill. 

Skye Davidson:        

Yeah.

Rebecca Seago-Coyle:         

How long will you have to take that pill? 

Skye Davidson:        

It really depends on the person. So, ultimately, I have to take it for the rest of my life if it's not effective. But now with CML, there are a lot of patients who go into what's called treatment-free remission. So, if a patient gets a really, really good response to the treatment, and they stay undetectable for a certain amount of time, then they try coming off of the treatment, and up to a certain percentage—I think it depends on the type of medication they're on and the type of response—but about half the patients who come off can stay off. And they can stay off potentially for the rest of their lives. And then, about half have to go back on.

So, that's something that's still years down the track. It's something that I hope may happen for me, but it's not really something that is at the front of my mind at the moment. So, I'll wait until I get into, and I do hope that I will get into undetectable, and then I can start thinking about it in a couple of years from then. But at the moment, I'm just trying to think about getting those numbers down.

Rebecca Seago-Coyle:         

Yeah, that's great. It's good to hear that you're getting such a positive response.

Skye Davidson:        

Yeah.

Rebecca Seago-Coyle:         

The other thing you mentioned was getting a blood test here in a few weeks. So, how often—you said you were also newly diagnosed. So, how often are you getting those kinda blood tests done?

Skye Davidson:        

So, these ones are done every three months when I'm in the treatment phase. When I was first diagnosed, I was getting blood tests quite frequently. And my kids new that I was always going to the blood place and getting blood drawn, and I had to drive them along with me a couple of times. And so, they've sort of gotten used to mom having to get blood tests. But, yeah, now it's only every three months.

Rebecca Seago-Coyle:         

That's not too bad. 

Skye Davidson:        

Yeah. And my son had to get some blood drawn recently just as a regular health check. And because I had to say, "Well, Mom's probably had dozens of blood tests this year, you can get through the one." And he was really brave about it. He did a great job. 

Rebecca Seago-Coyle:         

Yeah. 

Skye Davidson:        

And my daughter was fascinated. She loves doctors. Yeah, she loved going to the blood test and was really fascinated watching the blood come out. She wants to be a blood doctor one day.

Rebecca Seago-Coyle:         

Well, I'm glad there are some people in the world like that. I can't watch when they take my blood. It just makes me nauseous.

Skye Davidson:        

I'm lucky. I've never minded.

Rebecca Seago-Coyle:         

You also talked about some of the side effects, or that you have side effects from taking that pill. Can you talk a little bit about what you’ve experienced and how you’ve dealt with that?

Skye Davidson:        

Yeah. They haven't been particularly severe, but the one that really is sort of overwhelming is the fatigue. So, when I first started taking, I could barely get out of the bed in the morning, and I really struggled to get through the day. So, I've been working from home for the last few months, which I'm really happy that my work has been quite flexible and allowing me to do that so that I could take a nap during the day.

But as the months have gone on, I've been less tired, but I haven't been back to 100 percent. So, on a good day, I'll be sort of 90 to 95 percent. Some days, I'll feel about 60 percent, and I'll need a nap every day. And I hope that as time goes on, I'll get a bit more used to it, but yeah. Every time I'm feeling a bit run down, it affects my mental health as well. So, I find that when I'm struggling to stay awake and battling the fatigue, I get a bit down as well.

So, that's been the hardest thing, I think, because I'm usually quite a happy, positive person. So, to have those down days is not what I'm used to, but I just have to find coping mechanisms to get through that. And I always say it's better than the alternative, which is being dead. So, if I can just take the medicine, I'll stay alive and have to deal with the side effects, which could be a lot worse. Or I could come off the medication, and that is essentially a death sentence. So, yeah, I'm really lucky that I have that medication that I can take, and I'm very grateful for it.

Rebecca Seago-Coyle:         

Yeah. You also mentioned earlier to me before we started the interview about getting support from support groups. Now, I'm in the United States, and that's where a lot of our followers are, but we do have a big following in Australia as well. Can you talk a little bit about when you were first diagnosed and how you’ve gone to them for support or to find hope?

Skye Davidson:        

Yeah. So, before I was even diagnosed, when they thought that it was CML before I had that definitive blood test, I joined a Facebook group called CML for Australians, and that has been incredibly helpful. It was so nice to see all of these people sort of living well with CML, and the complaints that they have as well to know that I'm not alone in that.

And the woman named Sue who runs this group is a survivor herself. I believe she's in treatment-free remission and has been for a while. But she's so knowledgeable. and she always posts the most up-to-date research papers and links to things. And that's how I found Patient Power through her links. And it's a forum where I can ask questions, and I got some great support.

They actually have in-person meetings as well, so I got to meet about a dozen people with CML at lunch in Sydney a couple of months ago. and that was really lovely and so helpful. And there's another woman in the group who recommended the hematologist that I'm seeing, and I'm really happy with him. So, that's been helpful as well. It's just been a great source of information and support, and I don't know where I would be without it. I would definitely feel more alone in this, and it's nice to have people who just get it.

Rebecca Seago-Coyle:         

Right. I can relate to that as well with my own cancer diagnosis 10 years ago. It was good to be able to find someone who could relate to what was going on and that feeling of not being alone, and it was really helpful. So, I'm glad that you were able to find that support as well.

Skye Davidson:        

Yeah, particularly in the early days, it was really helpful. My friend that I needed less and less as time goes on, but at the beginning, it was a lifeline. It was great.

Rebecca Seago-Coyle:         

Yeah. So, how are you doing today? And what do you hope for the future? 

Skye Davidson:        

Yeah, today's a good day. I'm not too tired. I'm not sick. Yeah, so today I'm really hopeful. I'm really hopeful that my numbers will have come down when I see the hematologist in a few weeks. I'm battling the fatigue less than I used to, and I'm just grateful to be alive. I'm grateful that there's medication out there that keeps me alive. And I'm grateful to have the support of my family and my friends and my neighbors, because I've really been leaning on them a lot in these last few months. And yeah, I'm just grateful is how I'm feeling.

Rebecca Seago-Coyle:         

That's awesome. And if, in your support group, if someone is newly diagnosed or if you find someone else who's newly diagnosed, what would you want to share with them?

Skye Davidson:        

I think it's a tough one, because like I said, everybody's journey is different, and everybody's going to process it differently. And I did find that even amongst the group that I met in person, everybody has a different way of dealing with things. So, I guess I would tell people that your journey is your own. It is going to be different than other people, but there are people out there who will understand what you're going through.

And those support groups and the information that's out there is so, so valuable. So, keep reading. Try and stay positive. And just trust that the medication will do what it needs to do. And I'm lucky that I've had a really good response to it. Yeah, so, it's a tough one, because there's no definitive thing to say to anybody, I think, in a diagnosis like this. I consider myself really lucky, but I know that other people consider themselves very unlucky to have gotten cancer in the first place, but everybody's journey's different.

Rebecca Seago-Coyle:         

Well, Skye, thank you so much for sharing your story. I know that it can provide hope to others just hearing what you did. So, I'm very grateful that you are doing well, and you were willing to share your story with us.

Skye Davidson:        

Yeah, thank you. I was saying to you earlier that I find that other people's stories are so powerful, and they've helped me a lot. So, I hope that my story can provide a little hope for somebody, a little bit of context for what they're dealing with. And I appreciate the opportunity, so thank you. 

Rebecca Seago-Coyle:         

Yeah. Well, thanks for that hope. And as we say here at Patient Power, knowledge can be the best medicine.

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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