Turning the Tables on Andrew Schorr As He Prepares for CLL Retreatment

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Topics include: Living Well , Patient Stories and Treatment

As the Patient Power Founder and frequent host, Andrew Schorr is used to interviewing patients, physicians and care partners. Now, as Andrew prepares to undergo retreatment for his chronic lymphocytic leukemia (CLL) for the first time in more than 17 years, it’s his turn in the interviewee chair. Patient advocate Carol Preston joins Andrew to learn more about his road to retreatment, how he is coping emotionally with this new step and his advice for other patients.

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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.

Carol Preston:

Hello everyone, and welcome to Patient Power.  I'm Carol Preston.  Now, normally, it is Patient Power Founder Andrew Schorr who is doing the interviewing, whether it be to a specialist or to a patient, learning how they help us who are CLL patients navigate a sometimes tricky path.  Well, today Andrew has agreed to be interviewed to share his latest turn in his CLL experience.  The CLL is back to the extent that Andrew is going to be undergoing treatment, and we're going to cover all of what he's going through and what lies ahead for him. 

But first and foremost, Andrew, how are you feeling? 

Andrew Schorr:

I'm feeling really good, which, you know, without looking at my blood count you say, well, gee, do I really need treatment? I feel pretty good today, but you look at the numbers and you say, yeah, you probably do. 

Carol Preston:

Yeah, and I think many of us have sort of been there, done that, and therein lies perhaps some of the frustration. But of course since you were originally treated, wow, the field has—you know, you've come a long way, baby.  The field has come so long and so far. 

So—but before we get into all of that, could you just give us a quick synopsis, a quick reminder of how long it's been and what you were treated with originally? 

Andrew Schorr:

Right.  Well, I was diagnosed in 1996, just a routine blood test, didn't know what CLL was, found out, was helped by other patients, had no treatment for four-and-a-half years, eventually was in the FCR, fludarabine/cyclophosphamide rituximab (Fludara/Cytoxan/Rituxan) trial.  I think I was patient number of 60, and it worked.  And so I've had no treatment for CLL since 2001, February 2001 after six cycles, and I feel really blessed. 

Carol Preston:

So tell me…

Andrew Schorr:

…but it was—you track it, and for a long time it was just doing nothing. 

Carol Preston:

Yeah, so now it is of course doing something.  And what I'm wondering is—because I'm also, as I mentioned, a CLL patient, and this month I'm marking 11 years since original diagnosis, and also one of my two treatments, the last one, was FCR.  The reason I mention that is after the first one I always felt that that Damocles sword was hanging over my head and that a shoe at some point was going to drop.  Indeed, for me it did. 

Did you feel that way, or had you gone so many years that you figured maybe I've—even though it there's no cure I've beat this thing? 

Andrew Schorr:

I wanted to feel that way, and I got—you know, many of us think about CLL every day, and we're on the Internet, da, da, da.  I got to the point where even with the list on ACOR, which I've been very active in, I said, oh, I don't need to see it, I'm not thinking about it every day. 

But about four years ago with one of our friends with Patient Power, a leading specialist, Dr. Wierda, he said well, why don't we do a minimal residual disease test? And then we did it, and it came back, and I was not MRD negative.  And he said, you know, some day you're probably going to need treatment again.  And so then it was more clear and present for me.  I just didn't know when, and now the numbers have been showing when is now. 

Carol Preston:

When is now.  And you, fortunately, having when you came back to the states moved in the San Diego area in Carlsbad near UCSD, and one of the most fore—one of the most foremost specialists on the planet, Dr. Thomas Kipps.  You've been under his care since returning to California.  So talk a little bit about how you and he monitored your numbers together and the factors that drove to this now retreatment. 

Andrew Schorr:

Well, just I should say that I moved to Southern California in part because of two world famous doctors at UCSD.  Catriona Jamieson is a specialist for another condition I ultimately developed called myelofibrosis, scarring in the bone marrow, and Dr. Kipps.  So the ability for them, two really smart doctors to work together for what was going on with me is important, and that also relates to treatment. 

So I've been taking a pill, one of these $10,000-a-month genetic inhibitors, Jakafi or ruxolitinib, for the myelofibrosis, and I do have a slightly enlarged spleen.  Is it the CLL?  Is it the myelofibrosis?  But these doctors talking to one another, so I've had lots of monthly blood tests, right?  And so part of it is what's active?  Is it the CLL?  Is it the myelofibrosis, and what levels are they at?  And then in selecting a treatment ultimately for CLL how not to have it interfere with the treatment for the myelofibrosis, and people have other conditions, diabetes, heart disease, whatever. So that's always the question.  How do we not undo the good we're doing for some other condition and yet treat the CLL appropriately? 

Carol Preston:

And given all of that and your considerable knowledge in this area, what did Dr. Jamieson and Dr. Kipps decide, and you, ultimately? 

Andrew Schorr:

So what's recommended, which I'll start later next week, I'll see Dr. Kipps on Tuesday, but I'll be seeing him and then embark on treatment. And he's recommended obinutuzumab (Gazyva), sort of I call it son or daughter of rituximab that I had many years ago but a targeted monoclonal antibody that goes to I think it's the CD20 protein on the surface of the B cells, lymphocytes and have that. 

And then he also wants me to take a steroid with it.  I'm going to ask him more about that.  Some people are going through that.  So I may feel like Superman some days and then crash other days.  And then because I've had some recurrent chest infections, and we all know with CLL we're at risk of very serious or even life-threatening infections, is to have IVIG, immunoglobulin, that a number of people with CLL take.  And I'm going to be quizzing them about the benefit of that and for how long.  Some people just take it monthly forever, but I'd like to avoid as many pokes as I can. 

Carol Preston:

I don't blame you, and you remind me of my funniest, if there ever could be a funny story about being on treatment for cancer. My original treatment was an older regimen, CVP plus R, and the P was for prednisone (Deltasone).  And I believe it was after the second dose I was up in the middle of the night cleaning out drawers and closets nonstop like the Energizer bunny, and my husband tongue in cheek said, you know, a maybe it wouldn't be so bad if you were on this all the time.  Our house would be immaculate. 

But interestingly, interestingly, it was a different response every single time.  So you'll have ups and downs with the prednisone.  However, its primary goal and purpose was to get that spleen down and to make sure that red blood cells weren't accumulating in the spleen, so I think you're probably on a good track now. 

Andrew Schorr:

I should just mention, Carol, you know, I put it out there in the CLL community, and people have been wonderful, people who have had obinutuzumab or Gazyva, people who have had IVIG.  My friend, James Miller, up the road in California here who had steroids with his treatment and played like 20, 36 holes of golf because he had so much energy.  Whatever it is, people have been great, and they've said that our prayers are with you, whatever.  So thank you, everyone, for sharing your experience, and now of course in my mind is, okay, Andrew, what's it going to be like for me? 

Carol Preston:

And I think it's important, one of the reasons why we decided to do this interview is because you have been our fearless leader on many levels in terms of empowering patients with knowledge.  As you say, it can be the best medicine of all.  But your story is so important.  People do want to know not only how you're doing, that hopefully you're feeling well, but what you're doing because that also contributes to their menu of options as well to discuss hopefully with their specialist but at the very least their community oncologist. 

Now, you're choosing an infused treatment, and I did read your blog recently.  All of us worry about—you mentioned the $10,000-a-month pill for your MPN, for the myelofibrosis.  You could have chosen—or Dr. Kipps very well might have recommended an oral medication.  Did you purposely and consciously steer clear of that because of the expense issue? 

Andrew Schorr:

So about a month ago, in other words, more than a month before we're kicking off treatment, we discussed that.  So one is how do the oral therapies or individual ones work or work against the myelofibrosis and the treatment I take for that? So it would be the same for anybody with another underlying condition, right?  So that's, whether it's oral infused, you know, what—it's like when you go to the pharmacy, are there conflicts or contraindications?  So that was part of it. 

The second thing is though, yeah, I'm on Medicare and Medicare supplement and Medicare Part D and as anybody of that age knows, the oral therapies are expensive, your share of it is expensive.  So could you handle two of them?  And if you work like me, would you qualify for an assistance program?  Probably not.  So that's the catch-22.  So do you add two—do you have two of these expensive maybe breakthrough oral therapies, would it be affordable for you, or could you have an infused therapy that the way our insurance in the U.S. is set up with Medicare would be covered in a different way and maybe covered in a more affordable way. 

Carol Preston:

And, Andrew, you and I both have written and discussed this issue of the cost of the medications.  We've both blogged about it. And, interestingly, if you're a non-Medicare, patient there might be the possibility, depending on the state you live in for parity, i.e., an oral treatment would be treated the same as an infused treatment.  But for Medicare patients it is what it is.  That is not the case at this point. 

So there is this issue of picking and choosing to make sure that you get, hopefully, the best, most up-to-date treatment but in a way that's going to be affordable for us because we don't want to break the bank with this and yet, that's an issue.

Andrew Schorr:

We have enough to worry about, you know, with embarking on treatment.  How are we going to do it?  Is it effective?  How do we deal with side effects?  How do we, hopefully, have a longer, full life, and then to have the financial worry on top of it is really tough. 

Carol Preston:

How confident is Dr. Kipps about this treatment?  He's coordinated very carefully with your MPN specialist.  This is actually, was somewhat of a surprise to me when you announced that this was the route you were taking so tell me about his confidence level and your confidence level. 

Andrew Schorr:

Well, I'm pretty confident—well, certainly I'm confident in Dr. Kipps, and I hope any of you watching have a CLL specialist who is really in the know, and as Carol said earlier, there are so many more options.  So I think I'm confident that this is a good option, rituximab was a key part of my treatment and led a lot to the long remission I've had, and this is sort of the newer version of that, so I'm really confident that my body will respond to it, and knock—I kind of, you know, we all talk about whack-a-mole, that we're going to whack-a-mole CLL and, as my friend Susan Leclair said, you know, Andrew, may you get another 17, 16, 17 years. 

And, really, so I see it Carol, as a bridge to what's next, whether it's more affordable oral therapy, whether it's some other infused therapy, whatever, if and when I need it.  So it's got to do its job for hopefully many years.  If it doesn't cure CLL, will there be something really good to use then? 

Carol Preston:

And I think many of us, Andrew, think about these treatments as bridges.  We certainly talk about it all of time, and we just keep hoping and fingers crossed that the researchers do what they've been doing, which is fantastic for CLL and that there are many, many bridges that we can cross until the next better treatment is available. 

Now, in some ways the treatment is the easy part.  Then there's the emotional part, where your head is—exactly—where your head is and perhaps more important, where your family's head is because while you had an indication four years ago from Dr. Wierda that we need to keep an eye on things, they may also. But of course every family member is always hoping, oh, we'll just keep monitoring it, we'll keep monitoring it. 

So first of all, tell me where your head is when treatment became necessary and then if you would care to share how your family is dealing. 

Andrew Schorr:

Sure.  Okay.  So, first of all, the hardest part for me when I went through the treatment years ago was nausea.  So you know, I watch my counts.  Boy, my white count went down like 100,000 overnight the first time I got a dose.  My white count is not that high right now.  It's about—well, we'll find out just before treatment, but it's been about 85,000 and no big swollen lymph nodes.  Yes, slightly enlarged spleen, some night sweats, pretty good energy although not as high as I'd like it to be, so I know it's active. 

I am not looking forward to nausea if that happens again and pray that they've got better medicines than they did before.  Even I had years ago one of those like women who have nausea during pregnancy would wear like a little zapper on your nerves here, and you know, I was doing everything, and there were some days when I just had to be drugged out and get in bed because the nausea—I was like green.  The nausea was so bad. 

So, look, I want to beat the CLL, I want to be the whack-a-mole.  I hope there are ways to protect me from infection and IVIG and other things to boost your neutrophils and all that.  I want to work.  I like doing—I like doing the interviews.  I like meeting people.  I want to have the energy to do that.  Dear God, please let me do that.  Don't inhibit me from doing that.  Everybody says, take some time off, Andrew, and all that, but that's not my nature. 

So while I'm going through these day-long infusions I plan to be on the computer if I'm not whacked out with diphenhydramine (Benadryl).  I'll be on the phone.  I'm going to make it—one guy I heard about with CLL he made it his office.  UCSD, Moores Cancer Center infusion room, that's my office. 

Carol Preston:

Okay. 

Andrew Schorr:

Okay?

Carol Preston:

All right.  Well, you won't be spending that much time there…

Andrew Schorr:

I hope not.  I hope not. 

Carol Preston:

…but on the days that you're there.  So emotionally you sound like, you know, you're doing pretty well.  It sounds like—I think just about every patient says, I want my life to be normal.  I want to just go and do what I'm going to do.  And I do remember the first time I was treated the treatments were, you know, as I got into them, like treatment number four I was doing so well that a short time after I got home I got in the car, drove to the airport and did workshops in Illinois for two days. 

Andrew Schorr:

Wow. 

Carol Preston:

I mean, yeah, that might not have been ideal, but it worked out, and that's what we want.  We want to live our life normally, and we want people around us to treat us not with kid gloves but with the expectations. 

Andrew Schorr:

Well, my family, you asked about my family, so Esther is totally supportive.  We're going to be driving back and forth.  It's about 30 minutes to La Jolla where the treatment center is, where my son, who's 20, he's home from college, he said, dad, give me your schedule, tell me what I can do.  But they're not going to like—they're not going to halt their lives.  My wife Esther is going to during the break between cycles, she's going to visit our daughter and help her move to an apartment in Miami.  But she said I'll cancel the trip if I need to. 

And my next-door neighbors, who are very sweet people, said we're going to make you food.  We're going to be here for you.  The woman works in her own place next door.  I'll be there in 10 seconds, just let us know.  So people have been great. 

Carol Preston:

That's wonderful, and I know your family from the get-go, since 1996, has been nothing but supportive.  Do you feel that everybody's holding up okay, or is there a bit of—anybody a little wobbly at this point? 

Andrew Schorr:

Yeah, well, I mean that's the tough part for care partners, as Esther likes to call them, you know, is to show a game face, you know, for your loved one who is going through treatment and be there to support them, but you have your own worries.  I mean, look, does my wife of almost 32 years worry about losing me?  Does she worry if I get an infection, that that will be the last one?  You know, maybe the financial issues that come up, etc., but certainly a long?term marriage, we're blessed with that. 

Yeah, and my kids, I have three kids, 27, almost 24 and 20, and, yeah, I don't think they say everything to me.  They worry, and they take their cues from me, but happily I'm going into this like I've gone into it before.  I got through it before.  I'll get through it again.  And I think all any of us can have is a medical team that we trust and feel that we're going to be treated with effective medicines, and it if there are side effects, they can be managed. 

And with CLL I think more options than ever before, and if there's some tweaking that needs to be done, it will be done.  And if there's something else, whether it's an oral medicine or a clinical trial or whatever, and we'll just keep whacking the mole, right? 

Carol Preston:

Well, you've actually started to hit upon the last question that I wanted to ask you, and that is advice that you would give to other people facing treatment, one of which of course is to be working with a healthcare team that you trust.  And if there's any hesitation, what you and I always say, at least if you feel you need, just get one outside counsel, just get one second opinion from a specialist, and hopefully that expert or specialist can work with your local oncologist or in the case of a blood cancer hematologist-oncologist. 

Before we say so long for this particular interview, is there anything else that you want to let patients know in terms of advice, you know, if they have a relapse or a treatment that becomes needed. 

Andrew Schorr:

Well, I would first of all underscore what you said, become knowledgeable.  We try to help.  Carol, you and I and the whole Patient Power team do as well as we can in informing you so be knowledgeable and have a team you trust. 

But beyond that is I think be open about your feelings.  Talk about it.  There are communities, CLL communities, who are very welcoming.  Share what you're thinking.  Share.  You know, you are not alone.  And I think with your family and friends, I think be open about it, you know.  I'm a little worried.  I have a little trepidation as I'm starting.  I'm worried for me about nausea or feeling tired or can I work.  Be open about that and let them try to be open too. 

Sometimes you need counseling.  When I was diagnosed the first time, Esther and I went through counseling, you know, to kind of get our heads straight.  And that's fair too.  People get depressed.  People get anxious.  Acknowledge that, be open about it, but you're not alone, and there is support for all of that. 

Carol Preston:

I think that's a wonderful way to end this particular interview.  And I say this particular interview because, Andrew, what I'm hoping is either midway, I'm not a hundred percent sure whether it's three cycles or six cycles, you're going to keep us up to date.  And what my hope is probably in the fall that you and I can sit down, across the country, one on the East Coast, one on the West, and talk again and let us know where you are in all of this. 

Andrew Schorr:

Okay.  So, folks, I'm going into this like this.  Certainly I keep talking to myself inside that it's going to be okay, but I believe it will be.  Thank you so much for everybody in the CLL community for supporting me and Esther as we go through this.  I'll continue to be the reporter, because I know sharing my experience is helpful to others, and I always welcome you sharing yours with me too, so I'll be a back in touch.  Carol, thank you for putting me in the hot seat this time, but I'm happy to do it. 

Carol Preston:

Ah, well, it's always a pleasure.  Any excuse to have a conversation, because I may be interviewing you, but I'm also learning and picking up information and having important concepts and ideas reinforced as well. 

So, Andrew Schorr, we're going to pay attention to not only what you're doing as the Patient Power reporter but also as the patient.  We'll check back in with you probably in two or three months.  And in the meantime, I'm Carol Preston for Patient Power. And as Andrew likes to say, 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 2, 2017