Our Shared Experiences: Two CLL Couples Connect

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Topics include: Living Well and Patient Stories

More than 17 years ago, Patient Power Founder Andrew Schorr was treated at MD Anderson Cancer Center with FCR (fludarabine [Fludara], cyclophosphamide [Cytoxan], rituximab [Rituxan]) to combat his CLL. In 2017, Andrew’s medical team decided it was time to treat again, so he has begun infusion with obinutuzumab (Gazyva). Fellow CLL patient Mickey’s CLL treatment path is almost identical to Andrew’s. Joined by their wives—Andrew and Esther in Carlsbad, Calif. and Mickey and Robin in Houston, Texas—they meet virtually to share their experiences and insights. 

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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:

Andrew Schorr and Esther Schorr sitting in our living room in Carlsbad, California, as I'm in the midst of CLL treatment.  They're in Houston, Texas, Mickey and Robin, normally from Alaska, at MD Anderson going through the very same thing.  How are you doing? 

Mickey:

Pretty good day today.  Pretty good. 

Andrew Schorr:

So we thought that for our CLL audience we would show you how people are connecting even worldwide but us probably, you know, 1,500, 2,000 miles apart.  So Mickey was in the same clinical trial that I was in with Dr. Keating at MD Anderson way back.  He's 2001.  I started in 2000, the FCR fludarabine-cyclophosphamide-rituximab trial (Fludara-Cytoxan-Rituxan).  Here we are now, 16, 17 years later, Mickey, long time, we need treatment again.  We got a pretty good remission, didn't we? 

Mickey:

I'd say so.  Very good.

Esther Schorr:

Nice going. 

Andrew Schorr:

Yeah. And, Robin, you and Esther, you worry about us along the way.  Robin, how's Mickey doing? 

Robin:

I think he's doing really well.  If you asked me three days ago, I would have said, you know, when I was in a meltdown, I would have said not very good, but today he's doing great. 

Esther Schorr:

Maybe we should talk about, you know, the difference between what happened for you starting…

Andrew Schorr:

Right.

Esther Schorr:

…and what Mickey had, because Mickey was one day ahead, right? 

Andrew Schorr:

Right. Mickey started obinutuzumab with steroid…

Mickey:

Last Monday. 

Andrew Schorr:

…a day or two ahead of me.  And I think we should make it clear to everybody that everybody's journey is different. 

Mickey:

Amen.

Andrew Schorr:

And Mickey and I are similar.  We had 16, 17 years we didn't have any CLL treatment, so that's similar, but people respond to therapies differently.  So how did it go, your infusions of the drug just last week?  Because you had some complications. 

Mickey:

How did they go, is that the question? 

Andrew Schorr:

Yes. How did it go? 

Mickey:

Okay. It started on Monday with 100 milligram dosage, and it was 25 milligrams an hour, so four hours.  Plus an hour pretreatment and an hour observation at the end, so it takes all day.  So I started out and after—I was doing fine, and after about the first hour I got the shakes and the chills, and they stopped the infusion, got some…

Robin:

Albuterol?  Is that—no. 

Mickey:

No.

Robin:

Yes, yes.  We started drugs. 

Andrew Schorr:

Benadryl? 

Mickey:

Meperidine (Demerol). 

Robin:

Demerol, that's it. 

Mickey:

Demerol. It took about 15 minutes to get it.  They infused it, took probably another 15 minutes for it to work, and then the shakes stopped, and they started the infusion again, and I finished the rest of the day with no problems. 

Day two of cycle one is 900 milligrams, and it starts out at 50 milligrams an hour, and then they increase by 50 milligrams every half hour and on and on and on.  It takes about the same amount of time, six hours, and I just breezed through it.  I didn't feel any problems at all. 

The next day had labs in the morning, then went and saw Dr. Keating, my guy, and I felt great.  I mean, I was—I wasn't tired, I wasn't sweaty.  I felt like I had energy.  Everything was good.  He handed me the CBC, my white count went from 79,000 to 11,000.  Tremendous drop. 

Esther Schorr:

Big drop. 

Mickey:

Yeah. And so we headed for the hotel, made airplane reservations, had a big hamburger for lunch, and about 2:00 I felt really tired.  And I laid down, and about 6:00 my wife woke me up, and I had a fever.  And by 9:00 it was 101, which was the threshold, our instructions—we had a few—to go to ER. 

Esther Schorr:

Right.

Andrew Schorr:

So you ended up, I understand, in the hospital for four days. 

Mickey:

Yep, four days.  I think they always err on the conservative side, which is best.  When the doctor saw me, saw fever, he just went down his checklist, and he gave me antibiotics for fever, admitted me in the hospital and then went from there. 

Esther Schorr:

So the worry with you guys really at that point with the treatment is are you brewing an infection, right? 

Andrew Schorr:

Which could be very scary.  So you're out of the hospital, you're back at a hotel in Houston, and you're going to have further obinutuzumab (Gazyva) therapy this week.  How are you doing now? 

Mickey:

Well, we don't know that for sure.  We assume.  We know tomorrow morning we're getting labs, and Dr. Keating again, then of course it's up to him.  And we're set up for infusion on Wednesday, but he's got to look at it and decide if that's what he wants to do. 

Dr. Thompson, who saw me in the hospital, he's an assistant professor, leukemia department here, he wanted my platelets to be at 50 or above before treatment, and he called the fever a severe reaction, and the other thing he was concerned about was the delay for so long.  Usually it happens, if there’s a reaction, it's the first day or the second day, not late on the third day, so that was—and it lasted.  I mean, it took them several days to get that fever down. 

Andrew Schorr:

Wow.

Mickey:

And I had—it wasn't just taking acetaminophen (Tylenol).  I think they gave it to me five different times, and my fever would break and then it would come back, then it would break.  

Andrew Schorr:

So it sounds like you're doing better now, and you certainly have good care.  I did want to ask you a question about the steroids because we've been emailing with Rob, too.  So I was—on Saturday, which would have been sort of day four for me, I was doing all kinds of errands and running all around and acting like Superman. 

Esther Schorr:

While I was sitting on the couch looking exhausted just watching him doing all this. 

Andrew Schorr:

My mood was pretty good.  So, Robin, how was Mick's disposition on steroids?

Robin:

Well, I would say he was a little bit obsessive and over the top.  He kept asking every few minutes, you know, for me to go check and see if his lunch was out in the hall, and he wanted to know if I had brought him ice water, which I had.  And he kept saying, did you get that ice water yet, which he had next to him.  And then as soon as the nurse would come in he'd ask her the same thing. 

Esther Schorr:

Has that settled down now? 

Robin:

Pretty much.  I'm hoping it doesn't last. 

Mickey:

I don't know if they're going to give me the steroids on the next day or not.  I think that's still under discussion too.  And I have—I have glaucoma, so the steroids tend to increase the eye pressure, so that's another bit of information.  So everybody's different. 

Esther Schorr:

So your situation was a little bit different, Andrew, to summarize, you know.  Andrew had just a very mild reaction the first infusion.  Just flushed. 

Andrew Schorr:

I just had a little flushing the first day. 

Esther Schorr:

Right. And then the second day there was nothing. 

Andrew Schorr:

Nothing.

Esther Schorr:

But, interestingly enough, was it the third night or the fourth night? 

Andrew Schorr:

Fourth night.  So actually similar last night, which would have been Sunday night, so we had treatment Wednesday, Thursday, Friday, felt like Superman on Saturday.  Sunday afternoon started to go downhill and Sunday evening had a fever, not as high as yours, and then it broke, and I feel okay. 

Esther Schorr:

No more fever. 

Andrew Schorr:

No more fever.  So here we are in this adventure, you know.  When do we have these effects?  Do they come later?  But my white count has come down from 91,000 to, at least as it was measured Friday afternoon, 52,000. 

Mickey:

Yeah, that's great.  Mine is—mine is all the way down to 2,000. 

Esther Schorr:

That's incredible. 

Mickey:

Next step might have—and I might be reading into Dr. Thompson a little bit, I think the fact that mine was so dramatic, that change, that my body reacted differently because of that.  Or that's part of it. 

Andrew Schorr:

Well…

Esther Schorr:

We heard that from the doctors and nurses here too, that the bigger the drop the more likely you're going to have like a big reaction. 

Andrew Schorr:

Yeah, your body's going.

Mickey:

Dr. Thompson seemed to think that that was a good thing.  He didn't think it was a bad thing.  He thinks the immune system is responding. 

Andrew Schorr:

Yeah, no, I think so.  So how do you feel about things going forward?  You're choosing to stay in Houston for a while as you go through.  I mean, are you hopeful?  Are you encouraged?  How do you feel? 

Mickey:

Well, you know when I had FCR in 2001 I breezed through the whole thing.  I didn't have—I mean, it wasn't easy, but it wasn't anything like this.  I mean, I'd be tired and fatigued, the normal reactions.  So I fully expected the same thing when we came down here.  I'm going to breeze through this.  I'm just going to beat it and do it, you know.  And I got knocked back a little bit, but I'm thinking that I'm going to be fine on Wednesday.  I think they're going to give it to me, and I'm going to be fine. 

Andrew Schorr:

Robin, how do you feel about it? 

Robin:

I'm a little bit nervous, but I think he's going to do it. 

Mickey:

I think—I think how you look at it and your attitude about it has a lot to do with the outcome.  That's my opinion.  I think you need to be positive. 

Esther Schorr:

I totally agree.  I mean, you know, I remember being just terrified way back when.  You know, we had two little kids and they were—well, three little kids.  Three little kids—three little kids.  Two little kids.  How many kids?  We had a few kids anyway. 

Andrew Schorr:

We had one born after. 

Esther Schorr:

We had a few kids.  I was really worried about them and about you, and it all worked out.  And now I kind of feel like we're just all so fortunate that the medical treatment has evolved a lot, and I kind of know what to get freaked out about and what not to get freaked out about.  I don't know.  It's a little bit easier this time to roll with the punches, and I'm very hopeful that this will—is another remission. 

Mickey:

I think, you know, the first time you're diagnosed with CLL or whatever kind of cancer, I mean, we were totally shocked.  We had no clue what was coming.  We were following my blood cell counts while we were on vacation.  I'd go to the hospital to get a white cell.  I had no idea why it was high or what it meant or anything until we got home, and he said oh, yeah, you've got cancer.  It was like whoa!—either one of us.  We were in total shock. 

So I think this time it's not—don't know how to explain it exactly, but I feel like we're a little better prepared because of what we've gone through the last time. 

Esther Schorr:

Right.

Mickey:

And it's hard to know what to expect.  And part of the problem with CLL is everybody's different.  I mean, they don't—they just don't do, take this out, take out a tumor and whatever.  It's every treatment is different for every patient, and the reactions are different.  So it's nice to have a little bit of background.  I don't recommend it, but... 

Andrew Schorr:

Right.

Esther Schorr:

…it's not for the faint of heart. 

Robin:

Faint of heart. 

Andrew Schorr:

One of the things was I excited about talking to you and making friends with you is because I think we're all in this together.  There are individuals and couples like us, even going through the same treatment at the same time maybe with different reactions.  And one of the things we're blessed with in the CLL community is it's really coming together as a community.  Nobody has to feel alone. 

And we have some wonderful resources, like you have Dr. Thompson and Dr. Keating there, and we have Dr. Kipps and Dr. Troy and others in San Diego, and there are other leading CLL specialists around that we can all go to to get care.  So I'm pretty optimistic for the long haul. 

Mickey:

Amen.

Andrew Schorr:

Well, we'll check back but with you along the way, but we want to thank you in your stay in Houston.  Hopefully it's not too hot, the air conditioning is good. 

Esther Schorr:

It is too hot there. 

Mickey:

103, I think. 

Robin:

In fact, a nurse asked him, he was complaining about having night sweats, and she was so funny, she said, you're in Houston. 

Mickey:

Nurse Coy.  Remember Nurse Coy. 

Andrew Schorr:

Well, all the best.  And if your treatment resumes this week, whatever it may be, all the best with that, Mickey.  And, Robin, may he be just a wonderfully pleasant person, whatever the treatment is. 

Esther Schorr:

Call me anytime, Robin. 

Andrew Schorr:

And no more hospitalizations, okay?

Robin:

I'm with you, Esther.  I need a nap after all this. 

Esther Schorr:

Good-bye, guys. 

Andrew Schorr:

Well, as we like to say, Andrew and Esther Schorr for Patient Power, and we also—Robin and Mickey there in Houston, and we all know that 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 August 17, 2017