Myeloma Patient Cafe®: Do Myeloma Patients Worry About Life Expectancy?

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Topics include: Living With Multiple Myeloma

During this Patient Cafe©, patient advocate and mentor, Cynthia Chimelewski talks with several people living with myeloma to address the emotional and psychological needs of patients who are worried about life expectancy. Survivors share how they continuously overcome the fear through faith, science and education, and engaging with good support systems.

Produced by Patient Power. We thank AbbVie and Takeda for their support.

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Transcript

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.

Cynthia Chmielewski:

Let's talk about something a little bit more serious, life expectancy.  I know when we were diagnosed probably the life expectancy back then isn't what it is now. But even now if we look at it, life expectancy has gotten much better, but it isn't great.  Do you worry about life expectancy?  Anybody like to start with that one? 

Kathy Cartwright:

Do you want me to—I was going to say off and on because of being—and you guys are—are—you're on your journey, but the longer you're on it the more people think you're going to die.  I hate to say that, but you're like, wow, you're 16 years, and you're not dead?  Well, I'm not, but, you know.  It does make you think sometimes, you know.  Am I getting closer, or am I getting farther? So it comes and goes. 

I don't concentrate on it, personally.  I have too much going on in my life that I concentrate on, so I try not to think, well, because they did give me three to five years.  I always say, you know what?  The only one that knows our expiration is God, and I leave it at that. 

Cynthia Chmielewski:

Anybody else like to talk about life expectancy?  How about Eric?  Thank you go ahead.  Talk now. 

Brenda Jenkins:

I can talk on that.  I don't worry about death, and my faith has a lot to do with where I am when it comes to death.  And that first stem cell transplant, I didn't expect to make it through, you know.  I was doing this here trial, and it was so funny, because I went to sleep, and I felt like I was burning in the inside. And then I woke up and I had my kids' picture and my grandkids' picture, and I looked and I saw them, and I'm thinking to myself I'm still here.  I'm still here. 

So I was thinking that it must be a purpose for me being here.  And ever since then it's like—and I've had so many deaths in my family that has happened that I have been there, I don't even utilize the couple—you know.  But it's just I don't worry about it.  It's like I live each day.  I like that inch by inch you were talking about.  I live each day like it's my last, and when I go I'll go, you know.  

Cynthia Chmielewski:

Okay.  Amy, how about you, have you worried about life expectancy? 

Amy Garafalo:

Yeah.  You know, not—I don't dwell on it, but it definitely, you know, is something that's always there.  You know, when I was first diagnosed we would want to do a project around the house or spend money on something, and I would be like, you know, how many years am I going to get out of this, you know, remodeling or this new patio or—it's less and less because I've met so many people that, you know, are beyond the life expectancy of two to three years, four to five years.  So, you know, I try not to think about it too much.  I just try to, you know, again, day by day and just remain positive and hopeful. 

Kathy Cartwright:

Can I ask?  I think sometimes—it's each year do you guys find that it's different?  I mean, I find that over the years that my perspective changed on it, sometimes for good, sometimes for bad.  Like my children were little, so that was my main thing.  Oh, God, I don't want to die, my kids are little.  So I had that panic of that.  But as I got older and my children got older and I was living more like a diabetic with cancer, so to speak, as the new drugs came out and things like that, I didn't. 

And I think when I was drug-free I didn't think about it.  But this time having it come back so quick to my daughter's wedding, I was really scared I was going to die before her wedding.  And then I regrouped, said, hey, get out of that zone and think positive stuff. 

Cynthia Chmielewski:

Yeah.  I think I agree with you, Kathy.  When I was newly diagnosed, I was really worried about life expectancy.  And I think I was more worried about life expectancy not particularly for me but for my family, for my children, you know, for my daughter.  I wanted to be around to see some of those milestones to help my daughter through some of those milestones.

Kathy Cartwright:

Right.

Cynthia Chmielewski:

Things weren't set in stone at that point, and as time went on and I saw progress in my daughter’s life, I wasn't worried as much,

But every so often, I start worrying again when one of my good friends passes away, when I hear someone's having a relapse, then I worry again. But I try not to keep it in the front of my brain, you know, because you can't just worry every single day about it. 

Kathy Cartwright:

Right. 

Cynthia Chmielewski:

Eric, how about you? 

Eric Hansen:

Yeah.  I think my perspective is focusing on the science.  You know, when I was diagnosed I was given, like everybody else, three to five years, and I sort of looked at my life as being over about then.  But in that four to five years, the life expectancy has doubled, and now doctors will meet with a new patient and they will tell them, well, you can look at seven to nine years maybe.  No doctor told me that when I was diagnosed, but that's the new norm, I think.  And so I'm looking at this first four or five years’ life expectancy doubled. 

In the next four or five years, I expect it will at least double again if not have a cure on hand.  So I worry less and less about it the further along I get, and maybe that's just because I have an advantage over the rest of you in that I'm already 74, so there's only so much I can complain about.  I've had a really full life, and I did make it to my daughter's wedding and so on.  So at some point you have to say, well, there's not that much to worry about anymore, and just stay optimistic, because there's good reason to be.  

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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Page last updated on August 5, 2019