Facing Retreatment: Advice from a CLL Patient and His Care Partner

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Topics include: Patient Stories

Mark Silverstein, a therapist from Ontario, Canada, underwent FCR (fludarabine, cyclophosphamide, rituximab) to treat his chronic lymphocytic leukemia in 2011. Now, there are signs that he may be facing another round of treatment. Mark and his wife, Nelia Pacheco, joined Andrew Schorr at the CLL Live 2015 conference to share their advice for coping with the emotional aspects of a relapse, stressing the importance of communication, honesty and education.

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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. 

Andrew Schorr:

Hello.  Andrew Schorr on location in Niagara Falls, and I'm with someone who knows treatment, may know retreatment, Mark Silverstein, and his wife, right?  

Nelia Pacheco:

Yes.  

Andrew Schorr:

Nelia Pacheco, and they're from Aurora, Ontario.  Mark is also is therapist, so he had FCR, right?

Mark Silverstein:

Correct. 

Andrew Schorr:

2011, Nelia says, and now I can just see by the lymph nodes on the side of your neck you may be headed for retreatment. 

Mark Silverstein:

Absolutely.  

Andrew Schorr:

Maybe ibrutinib (IMBRUVICA®).  Okay.  He's in discussion with his doctor.  So what would you say as a patient and as a therapist for someone in your situation where you're worried that another shoe is going to drop, meaning treatment again, and you had hoped to avoid that?  How are you coping with that yourself?  And you have that training, you know.  How do you work through it? 

Mark Silverstein:

I think the best way to work through it is actually to be honest about your feelings, to express your emotions, to communicate with your wife and your partner, and to kind of be on the same page.  I think that's extremely important.  And finally to educate yourself.  So when we go in to see our oncologist we challenge him.  He actually—the last time we were in there he commented that I'm the only patient he actually sits down for because I just, like, I pepper him with questions until I want to hear—until I get an answer that I want to hear or at least close to it, anyways.  

Andrew Schorr:

Now, you've been hearing from world experts here, both of you.  So, Nelia, does this give you a great deal of hope?  You're hearing about novel agents.  Mark may get one. And so even though the first treatment has not worked longer, you know, it still worked quite a while…

Mark Silverstein:

Yeah, we're—I'm still grateful.  

Andrew Schorr:

Yeah.  So are you hopeful? 

Nelia Pacheco:

Oh, absolutely.  Every time I'm involved or surrounded with this type of information it's just—it is, it's just—not to use the term, it's incredibly empowering, and it's very positive, and that's the, you know, the frame of mind we want to remain in.  And the more we know the more excited we get, and we know it's on the cusp.  We know we're so close.  We're so close.  I'm very excited. 

Mark Silverstein:

Absolutely. 

Andrew Schorr:

So, Mark, do you see it as, whether it's ibrutinib or another drug, that it's sort of like keep knocking it on its head, hopefully to cure it at some point, but you're really just keeping pushing it back?  

Mark Silverstein:

I kind of see it as I look at it as a bit of a chess game, and it's just—I like to kind of look at it about two or three steps ahead, so that's a bit of my challenge at the moment.  I kind of feel like I kind of know I'm going to have ibrutinib, because I don't have much of a choice.  In Canada, there's not much else unless I get into a trial, but I'm a little unclear about the next steps, and I think that's probably more where my fear comes from at the moment, is if I had a better understanding let's say if ABT-199 was effective on people who—where ibrutinib no longer worked on you, I would feel a little more comfortable. 

I knew my next chess move was there, but I'm not—and I kind of know that there probably will be a next chess move, but I don't know what it is exactly yet and that—and that part of the unknown certainly makes it a little more challenging from a fear perspective.  

Andrew Schorr:

Now, you didn't ask for this as a qualification, but having leukemia and having many cancer patients as your patients, does it help you do a better job? 

Mark Silverstein:

I certainly would like to believe so.  I mean, I have a better understanding than most people, you know, when I'm talking to them…

Andrew Schorr:

You're living it. 

Mark Silverstein:

I've lived it.  I know what they've gone through, whether it's—whether they have breast cancer or whatever cancer.  I know what chemotherapy's like.  I know how—I know how much cancer changes your life and every aspect of it, from your partnerships to your—to how you think about it, the amount of loss you experience, your relationship to mortality, to just not being the person you are anymore.  I'm a totally different person, and that's a good thing, but it takes a while for, you know, your partner to get used to it. And it takes a while for you to get used to it, too, because things just—it's—I don't think people who haven't gone through this totally, fully appreciate how much it affects every aspect of everything. 

Andrew Schorr:

But you're working on it together.  

Nelia Pacheco:

Absolutely.  And as a partner it's catch-up.  Mark's already there, and I just—he just needs to be patient until I get to where he's at.  And again it's communication, and it's talking about it.  Fears, hopes, dreams, and the future, absolutely. 

Andrew Schorr:

Well, I hope you have a long future together. 

Nelia Pacheco:

Thank you.  

Mark Silverstein:

Thank you so much. 

Andrew Schorr:

Nelia, Mark, thank you so much for being with us.  Andrew Schorr in Niagara Falls with Mark and Nelia.  Mark probably will be headed for treatment, but let's hope we can do an interview a long time from now, and you'll feel great, and you will have helped a lot of other people, too. 

Mark Silverstein:

That would be great. 

Andrew Schorr:

Remember, 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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Page last updated on December 14, 2018