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Cherie Rineker on Her Journey Through 15 Myeloma Treatments

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Published on May 28, 2019

In Dallas, Texas at the HealtheVoices conference, patient advocate Cherie Rineker joined Patient Power to share her outlook on life after living with multiple myeloma since 2012 and enduring 15 different lines of treatment—including a CAR-T cell therapy clinical trial. Watch as Cherie discusses her failed treatments, considering options after relapse and how she continues to live life to the fullest.

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Transcript | Cherie Rineker on Her Journey Through 15 Myeloma Treatments

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.

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 from Dallas and the HealtheVoices Conference where 140 of us e-patients are together being inspired and educated.  And with me is my friend Cherie Rineker, who is from outside Houston.  Cherie, of course, has been living how many years now with myeloma? 

Cherie Rineker:

This is my seventh year.  I was diagnosed late 2012. 

Andrew Schorr:

Okay.  And she's just the brightest light.  Put on your sunglasses there.  Let's see that for a minute.  People know her that way because you've been trying to be sunshine for a lot of people and for yourself. 

Cherie Rineker:

And for my daughter. 

Andrew Schorr:

And for your daughter. 

Cherie Rineker:

That's where it all started, the whole fighting—the reason I'm still here today, she's on the top of my list of people that saved my life.  Absolutely. 

Andrew Schorr:

All right.  Well, let's talk about—yeah, you can take those off now—but you've been through 15 lines of myeloma treatment, and here in recent years we've had so many new approved therapies and where people unfortunately often didn't live very long, people have been living longer, even seven years for you. 

Cherie Rineker:

Right. 

Andrew Schorr:

That didn't happen so much before. 

Cherie Rineker:

Right. 

Andrew Schorr:

But yet treatments have ultimately let you down. 

Cherie Rineker:

Yes, they have. 

Andrew Schorr:

Most recently, starting within the last year, you had chimeric antigen receptor T-cell therapy, experimental for myeloma, and you've met other people along the way, and you've had high hopes. 

Cherie Rineker:

Yes. 

Andrew Schorr:

What's been happening? 

Cherie Rineker:

So I was reinfused—I was infused with my CAR-Ts on March 12th of 2018.  On 2012—2019 I went in front of 500 scientists to talk about my journey, and that morning I found that the tests that had been done the week prior had shown that the disease, where I was minimal residual disease negative to the one millionth and we had talked about that, it had come back in both my kappa light changes and in my Bence Jones, and four hours before I had to go on stage I found that out. 

Andrew Schorr:

Whoa. 

Cherie Rineker:

I was pretty, pretty disappointed and, well, devastated. 

Andrew Schorr:

Now, you have met other patients who have had CAR-T experimentally for myeloma along the way, and we've lost some. 

Cherie Rineker:

Yes. 

Andrew Schorr:

But there are others who are alive. 

Cherie Rineker:

Yes. 

Andrew Schorr:

Okay.  And you're alive. 

Cherie Rineker:

Yes. 

Andrew Schorr:

So maybe we don't know what some increase, some increase in the numbers means.  Does it go from 0 to 60, or does it just increase a little bit? 

Cherie Rineker:

Right.  So that's my hope now.  For me, I have always increased right away a lot even if it wasn't so much in numbers, kappa light numbers or Bence Jones, it certainly was always in new lesions and new plasmacytomas.  So a couple weeks after that bad news came, I turned in bed and cracked a rib, and that really made me feel, gosh, it's happened.  What do we do now? 

Andrew Schorr:

You were imagining the worse. 

Cherie Rineker:

Of course.  As—when you've had 15 lines of failed treatment, or 14, and it happens again and you're hurting again—and on my 50th birthday I was great.  Two months later, I was in the hospital for 12 days for pain management, because I had a nine-centimeter tumor on T12 and a new tumor on my sternum that broke it, where two months prior I had nothing. 

So things happen with me really quick, and the reality has set in that I'm working against time, and I'm working—you know, there was always another drug on the—that was getting close to being approved, and right now that's not the case.  The only options that I have is either the redo of chemo, which some patients try.  I do not want to do that.  I could get a reinfusion of the same trial that I was on.  I'm considering that.  And then there's other CAR-Ts or BiTEs trials that I could, but most of these trials are all in Phase 1, early cohorts, which means low dose, you know, going up.  And so we really have to be as sure as anybody possibly can be that I pick the right trial this time. 

Andrew Schorr:

Right.  Well, but the things is that right trial could be the miracle trial for you. 

Cherie Rineker:

It could.  And so, as I always say, people ask me what keeps you going and I say as I have to write…

Andrew Schorr:

Let's show that. 

Cherie Rineker:

…my six-letter—my six-word what keeps me going in life.  This actually I wrote. 

Andrew Schorr:

It was. 

Cherie Rineker:

It was always about love anyways, and I found out I had come up with these six words when me rib had cracked on that day, and then you start to think about dying.  As I tell people, I have been busy dying or preparing for death for six years now because I was diagnosed in late stage and it has been a tough journey.  So where in the beginning I couldn't talk about it, I would cry and stuff, I have been able to turn it around, look at the positives, see even the humor in some of these horrible situations.  Like, well, at least I won't have to worry about A, B or C.  At least I don't have to worry about wrinkles, or, you know, just stupid stuff because my brain is always searching for positive things. 

And I was thinking for me in the end it was always about love anyways, and the anyway kind of came from I'm on my death bed, and, hey, as long as I kept loving until the end and as long as I was loved until the end, then life was good. 

Andrew Schorr:

Well, all right.  Let's say this.  Multiple myeloma, leukemias, so many of the conditions we cover, we talk to people who are facing very, very serious illnesses, and a lot of progress has been made, but are we cured?  For most all of them, no, we're not.  Can another therapy help?  We hope so.  Is an experimental therapy?  We hope so.  Is there yet another one around the corner?

Cherie Rineker:

We hope so. 

Andrew Schorr:

We hope so.  So that's where we are.  That's the real world.  It doesn't mean give up. 

Cherie Rineker:

No.  No, no.  I'm living more fully for the last couple—well, for the last year, but especially last couple months.  My doctor was upset at me the other day because I didn't go get my labs done, but I wanted to come to this conference.  And I feel like I have this urgency to live, excuse my language, the hell out of life right now.  And so if that turns into another two years or 20 years or two months, whatever, then I feel that I lived as good as I could for as long as I could. 

So there's no sitting on the couch for Cherie waiting, because I think I'm dying now.  I've been doing it for a long time.  It's the death sentence were all given from the moment we're born, and so I'm just a lot more aware of it.  And the silver lining is that I make each and every day and every moment count with friends and loved ones. 

Andrew Schorr:

And we should just mention we're recording this at a conference in Dallas where there are 140 patients, some care partners as well, with a whole range—like 60 different conditions, multiple myeloma is one of them.  And there's a tremendous inspiration in the room, and people have all different issues with the illnesses they have.  Progress has been made in some, not all, but I think there's tremendous power that we want to live and live as well as we can for as long as we can. 

Cherie Rineker:

Yes.  And you know, sometime I stand out in my own neighborhood or in my own family as the inspirational one.  I will tell you, I was inspired by a lot of people today, people that have had it much worse.  One man that has survived five cancers, and other people that can't use their bodies anymore.  So I always believe—comparing your life to others, if you look for the people that have it better than you you're going to be depressed, but if you look at people that have it worse than you, it can actually work in your favor and you can be more grateful. 

Andrew Schorr:

And the power that they have to go on.  So, Cherie, I want to give you a hug.  Really. 

Cherie Rineker:

Thank you. 

Andrew Schorr:

And I hope we get to do these get-togethers for a long time. 

Cherie Rineker:

I hope so too. 

Andrew Schorr:

I hope so.  I hope so.  I hope so, but what we all know is each day is special and we try to live it to the fullest.

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.