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Follow Your Instincts: Jay’s CLL Story

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Published on September 10, 2019

Patient advocate Jay Sperling, who was diagnosed with chronic lymphocytic leukemia (CLL) in 2002, joined Patient Power to share his experience with various treatments, changing providers and coping with cancer as a family. Jay explains why he feels it's important to trust your gut when it comes to CLL care and why he remains optimistic about the future. Watch now to hear his CLL patient story.

This town meeting is sponsored by Pharmacyclics LLC and Janssen Biotech, Inc. in partnership with The US Oncology Network, Compass Oncology, Willamette Valley Cancer Institute and Research Center, The CLL Global Research Foundation and The Leukemia & Lymphoma Society (LLS).These organizations have no editorial control. It is produced solely by Patient Power.

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All in all we were very glad we took the time to drive to Tampa from the other coast of Florida and would gladly do so again. Thank you for your part in putting this together for us CLL patients.

— Michele

Partners

The Leukemia & Lymphoma Society (LLS) Compass Oncology The US Oncology Network Willamette Valley Cancer Institute and Research Center

Transcript | Follow Your Instincts: Jay’s CLL Story

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:

With Andrew Schorr here with my friend now, Jay Sperling, who has been living with CLL since 2002.  Varies treatments.  He's been in clinical trials, some that were stopped because the company went belly up, other trials that have continued, and now he's on ibrutinib or Imbruvica and doing well. 

Jay Sperling:

Doing well. 

Andrew Schorr:

And like me, you're getting immunoglobulin to try to have your immune system boosted a little.  You're doing well?   

Jay Sperling:

Yeah, doing well.  I think the immunoglobulin has helped some.  We'll see.  It was only a couple of weeks ago, but I do feel better. 

Andrew Schorr:

So this is 2019, diagnosed in 2002.  That's quite a journey on different treatments.  Sometimes with not good results.  You've had twists and turns.  How do you see this CLL journey?  How do you see it?  And also looking to the future. 

Jay Sperling:

Yeah.  Well, I'm optimistic about the future, and part of it is the things that we learned from Patient Power and other places about what's out there, what's coming.  I think that's been a theme of CLL for me the whole time is through Dr. ?Sharman in particular.  There's stuff in the pipeline always, and he's always been good about coming in and talking about that. 

The journey itself, I think in some ways I was fortunate.  I decided at the beginning, in part because I was told I probably would be six to seven years before treatment, that I wasn't going to be frightened, that I was going to take what was given to me and try to make the most of it in terms of living and family time and travel and the rest of it.  We did run into a—after I did the FCR in 2009 it was a short—that was a short trip, you know, under two years, and then I got into the next phase, which was bendamustine (Bendeka) and rituximab (Rituxan), and you know, sure, it's a great treatment for some people, but it literally almost killed me.  I mean my ANC numbers were terrible. 

The nurses in the infusion lab are good sources.  If you cultivate them, you know, are nice to them, they said, no, this is not right.  You're not doing that well.  And I think the mistake I made along the way is I trusted my community oncologist and that trust was justified, and with Dr. Sharman I absolutely trust him and Jeannie…

Andrew Schorr:

…CLL specialist. 

Jay Sperling:

Yeah, CLL specialist in Eugene, and in between we got sent to another provider, or I chose to go to another provider, and right from the beginning my instincts were, this isn't quite right, and I should have trusted those.  That's where I got the bendamustine recommendation, and I think at that time if I'd looked a little harder I could have gotten into a clinical trial.  And I give just the journey, I give Dr. Sharman and Jeannie a lot of credit for kind of bringing me back. 

Andrew Schorr:

Your doctor and nurse. 

Jay Sperling:

My doctor and his clinical nurse, yeah, clinical trial nurse, yeah. 

Andrew Schorr:

So you're on track now, and right now ibrutinib is working well for you. 

Jay Sperling:

It is, yeah.  My numbers, the first time since 2002 I have white blood count that's under—you know, in the normal range, yeah.  

Andrew Schorr:

That's great.  So how do you see the future? 

Jay Sperling:

I think it's going to be fine.  I mean, I think I'll keep‑‑especially if—you and I share this IVIG routine—if that works for me, and I'm very optimistic about the future.  I think—my wife keeps sending me stuff on venetoclax (Venclexta) and telling me that's the next thing.  And Dr. Sharman has been careful with me.  I mean, he doesn't put me onto something until the one I'm on has failed, and so I think when the time comes…

Andrew Schorr:

…if it's not broken, don't fix it. 

Jay Sperling:

If it's not broken don't fix it, yeah.  So life has been a little tougher in the last year because we've had these illnesses—I've had—and if we could shake those I'll be very happy, so I'm thinking that's what's coming.

Andrew Schorr:

Now, you have two grown daughters who worry about you, and your wife has said when you have a doctor visit they're like getting in touch with her.  What did they say?  How's dad doing?  What are his blood counts, etcetera.  So what would you say about helping our people who love us just feel more comfortable?  Because you're are pretty upbeat. 

Jay Sperling:

Yeah.  Yeah.  My younger daughter is actually worse than that.  She accuses me of keeping secrets from her, and I say.  I tell you everything I know.  Oh, no, you must be hiding something.  But I think it's just a sign of her care. 

I would say, you know, I was very leery about telling other people, but I'm very glad we sat down early and explained at dinner to the girls what the situation, what was coming, what my community oncologist, a guy named Dr. Kenyon, was telling me, and I think that was went right thing to you.  And it's kind of brought them in from the beginning and has kept them in the loop, you know.  They don't feel as worried because they don't feel like there's hidden agendas. 

Andrew Schorr:

That's good.  So you're feeling upbeat.  So they take their cues from you. 

Jay Sperling:

Yeah.  Yeah.  I think they do.  And, you know, I would only add to that that at one point we finally—my wife told a group of friends that she needed a support group, and they were god about keeping it to themselves.  Because I'm basically a private person.  I don't share a lot, but when the time came to start clinical trials, we did let a group of friends—we have a thing on the computer that says Jay's friends, just small.  It's not like Facebook or something, it's a small group, but we did let them know what I was going to be doing, and when that failed we let them know that I was going to have to do something different.  So. 

Andrew Schorr:

One last thing.  You mentioned your wife, Alice.  Are you respectful that she may sometimes need support separate from you as a caregiver? 

Jay Sperling:

At first, to be honest with you—and she's sitting here—at first it—I don't want to say it irritated me, but I was—again, I didn't want a lot of people knowing, but I could see that it was really important to her and that our friends respected my wish to not have them broadcasting this.  So, yeah, it's been fine.  And she's been so supportive in the research that she does, and that's really important to her and to me, and so, no, I got over that pretty quickly. 

Andrew Schorr:

Well, you two have been married 47 years. 

Jay Sperling:

Yeah.  Yeah. 

Andrew Schorr:

And you're both doing well, and I think with the proper treatment that you're getting now I can't see any reason why you're not going to have a lot of good time together.  So, Jay, all the best to you. 

Jay Sperling:

Thank you, Andrew.  And you as well, and I'll just tell you I feel optimistic in good part because what we get through Patient Power.  So thank you. 

Andrew Schorr:

Thank you so much.  Andrew with Jay.  Both of us doing well and upbeat and very thankful for our spouses who are great partners in this journey. 

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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