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CLL Survivors Share Their CAR-T Cell Experience

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Published on July 22, 2020

Patients Describe Their CAR-T Cell Therapy for CLL

What does CAR-T Cell therapy involve? Why do certain CLL patients undergo this not-yet-approved treatment option?

In Part 1 of our recent CLL Answers Now program, host Andrew Schorr talks to two CLL survivors, David Garcia and executive research director of the Leukemia and Lymphoma Society, Larry Saltzman about their experience with CAR-T Cell therapy. Watch as they discuss their treatment journey and what lead them to trying CAR-T Cell therapy, which is still considered an experimental drug, and how they are doing now. Dr. Nitin Jain from the University of Texas MD Anderson Cancer Center also discusses the definition of what CAR-T Cell Therapy really is.

This is part one of a two-part series. Watch Part 2 here.

Although this is a sponsored program, Patient Power maintains editorial control and is solely responsible for the content of this program.

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Transcript | CLL Survivors Share Their CAR-T Cell Experience

Andrew Schorr:
Good morning. Good afternoon. Good evening. Wherever you are in the world. I'm Andrew Schorr near San Diego. Welcome to this CLL Answers Now program. Thank you so much. I've been living with chronic lymphocytic leukemia for 24 years. I had the FCR chemo and rituximab (Rituxan) treatment in a clinical trial many years ago, about 17 years ago, and then had a monoclonal antibody treatment with steroids about two years ago and I'm doing well. Some people never have treatment for CLL. Some people wait a long time. I had over four years of waiting and now we have such modern therapies, ibrutinib (Imbruvica), acalabrutinib (Calquence), venetoclax (Venclexta). There are other drugs in the pipeline nearing approval. Lots of stuff, monoclonal antibodies, obinutuzumab (Gazyva), rituximab as I mentioned, combining drugs now in clinical trials, and they work for many, many people, maybe for a long, long time, but they don't work for everybody all the time.

Some people end up having more aggressive CLL, and that's where Chimeric Antigen Receptor (CAR) T-cell therapy could come in — still experimental for CLL approved in some other areas like acute lymphoblastic leukemia and also in some more aggressive lymphoma. They're trying it also in multiple myeloma, but they're trying in it CLL. So today's program is about seeing what could lie ahead for people like me and maybe like you, and also meet people who've been through it and have a leading investigator on with us as a resource.

Okay, let’s meet our guests. So joining us from Houston, Texas is Dr. Nitin Jain who's a leukemia specialist in the Department of Leukemia at MD Anderson in Houston. Also joining us from Sacramento, California is my friend, Dr. Larry Saltzman retired physician who's been an executive nationally with the Leukemia & Lymphoma Society, a partner of ours, and Larry's been through CAR T. So Larry, we're going to hear your story in a minute. Also joining us as another friend of mine, Dave Garcia. Dave joins us from Las Vegas, Nevada. Dave is a pit manager at the Bellagio hotel and casino and has done that for years. But since 2002 has dealt with CLL, Larry 2010, and Dr. Jain joining us as well. So, okay, we've got some great guests. First of all, Dr. Jain, I want to start with you. Could you define CAR T for our audience so we know what we're talking about? And then we want to hear Dave's experience and Larry's, okay?

Dr. Jain:
Sure. Yeah. Good afternoon, everyone. So CAR T-cell therapy stands for Chimeric Antigen Receptor. So this is a therapy, which as Andrew mentioned, is approved actually for certain leukemias and a lot of clinical trials going on for patients with CLL. But what really it stands for, what it does is that your immune cells, the T-cells, which all of us have, basically they are taken away from you by a process called leukapheresis, then these T-cells are re-engineered in the lab with some genetic manipulation, most commonly adding a target called CD19 to these T-cells. And those then T-cells are given back to you, react to the patients after they receive brief chemotherapy. And when the T-cells go back to the patients, they are really like bullets where they are targeted to hit to CD19 positive cells. And CD19 happens to be an antigen, a protein which is on the cancer cells of CLL cells. So when these cells go back, these immune cells go back, they are really fighting the CD19 positive cells so what we see is that they try to ablate the cancer and that's what the theory behind the CAR T-cell strategy is.

Andrew Schorr:
Okay. So it fits in the category of what you call immunotherapy because basically you're trying to have the patient's own T-cells, infection-fighting cells be sort of powered up to recognize the cancer it missed the first time?

Dr. Jain:
Correct.

Andrew Schorr:
Okay. I always think of it like training a bloodhound, the bloodhound was asleep in the corner of the kitchen and then you say, "Wait a minute, sniff this, this is the cancer, go get it." And maybe you have five bloodhounds or 10 or 1,000 bloodhounds, right? So that's my little analogy. So Dave, I've known you for a long time. You met me after you saw I was dealing with CLL, you and I met in person years ago in Las Vegas. So you had what I had, FCR, fludarabine (Fludara), cyclophosphamide (Cytoxan), Rituxan. You went to MD Anderson. And my understanding is you had, what, four different times hoping to keep beating back the CLL, right?

Dave Garcia:
Correct. My first time was six months and I had probably 7 years of remission. And then we did three months, kept coming back and so it got to the point where we were putting a Band-Aid on a compound fracture. It just wasn't working anymore.

Andrew Schorr:
Right. Well, one idea of treating CLL if you can't cure it is whack-a-mole, but the idea is to do it for an extended time, but over as it went on, you weren't getting an extended time.

Dave Garcia:
Correct. So that's when I went to the ibrutinib, took that for a few years.

Andrew Schorr:
Right. Okay. So ibrutinib worked for you for a while. So ibrutinib comes out and it worked for you for an extended time.

Dave Garcia:
Correct. For a few years. And after a while, my counts were good but my lymph nodes were literally exploding, getting large. So, my local doctor here told me about CAR-T therapy and City of Hope, and I had a relationship with Dr. Foreman, so I went.

Andrew Schorr:
Okay, well we're going to get to that part for a second, but before CAR-T, somebody like you, and I think you and I had talked about along the way, would be a candidate for stem cell transplant. So that was the big gun in CLL, right?

Dave Garcia:
Correct.

Andrew Schorr:
And you were set up for that, and my understanding was your sister was a perfect match. Why didn't you get the transplant?

Dave Garcia:
Yes, we were all set up to have a transplant at the City of Hope and at the last-minute Dr. Foreman called me and said, we will not be doing it because the disease was too extensive. And he said, basically what we're going to ask your sister's stem cells to do is [inaudible] and that's not what we want.

Andrew Schorr:
Yeah. Heavy lifting. Right. Okay. Well, you must have been pretty despondent.

Dave Garcia:
Yes. So he told me to bridge it, that we use the ibrutinib as a bridge to the transplant. That was the initial goal.

Andrew Schorr:
Okay. Well, what happened was then you were on a bridge, ultimately you were accepted into the, I think they call it the J CAR trial you were on for using your own T-cells to go after the CD19 Dr. Jain was talking about. So that was in April of 2019. We're doing this program…That's when you got the cells.

Dave Garcia:
Correct. The injection was April 2nd.

Andrew Schorr:
Okay. So here we are now in July of 2020, how are you doing?

Dave Garcia:
I'm doing great. Doing great. I just had my cat scan last month at the City of Hope and all my counts are good. Everything's good.

Andrew Schorr:
Okay. Just a little color commentary before we go on to Larry, how do you feel about how this worked out for you?

Dave Garcia:
Oh, I couldn't be happier. It was a tough process, but I was so excited to be accepted into the trial and very excited because I've heard so much good things about it and I was very excited.

Andrew Schorr:
All right. Well, we're going to put it in perspective because it hasn't worked for everybody. But would you say that in your estimation CAR-T to this point has saved your life?

Dave Garcia:
Oh, absolutely. For the first time in 18 years, I'm not taking any meds at all. No pills at all.

Andrew Schorr:
Okay. All right. Wow. Quite a story. All right. Let's go on to Dr. Larry Saltzman. So Larry, you've been a friend of mine for a long time and we've traded CLL stories. There you are diagnosed in 2010, kind of self-diagnosed, right? You knew something was going on and you went through not FCR, but bendamustine (Treanda) and rituximab, so chemo and a monoclonal antibody, but it just didn't get you there, did it?

Dr. Saltzman:
Right. So I had six months of chemo and 11 months later walked into my doctor's office and she said, "Oh, I'm so sorry." And I said, "Why?" She said, "Well, you've relapsed and we expected it to go a bit longer." So we got 11 months out of the bendamustine and Rituxan and by the next summer, June of 2015, I did start on ibrutinib and that helped my symptoms of swelling and night sweats and all the classic things.

I was a little bit of a particularly complicated case because three months later I had an obstruction in my bowel which was due for the lymph node that didn't respond to the ibrutinib. So I had to have the right side of my colon out and they stopped the ibrutinib, not knowing if it really should continue. So I started on a clinical trial, the following winter of a drug now called venetoclax or Venclexta, and that seemed to work but it didn't take care of my lymph nodes. So in June of 2016, I actually went on a combination of both ibrutinib and venetoclax. Not a clinical trial. It was my own guinea pig kind of thing and that was almost like a miracle. And it took away my symptoms. I became MRD negative for quite some time and lasted for three years.

This past June, my nodes came back, CT scan showed other lymph nodes in my chest and the thought was that CAR T was really my only option and the question was, could I get into a trial and where would I go? I ended up being accepted up in Seattle at the Seattle Cancer Care Alliance with a J CAR 17 trial. And all was well. I went up to get my leukapheresis to get my cells out. And I had my little selfie picture. I call it a “cell-fie” picture, I had a bag of cells that was my selfie. And then we went home and waited for three weeks. But in the interim of the three weeks after I had my cells removed, something happened and my CLL, broke through and I had a terrible relapse.

My platelet counts went down to 1,000, my hemoglobin, everything was awry, spleen enlarged. So it took the good folks in Seattle two months of treating me to get me to the window that would open to allow the CAR T-cells which were ready and waiting for me to be injected, and that date happened on December 19, 2019, I received my CAR T-cells. And from that day on, it was a rough go for the first month. They listed all the side effects that someone could have. I basically had all of them except I did not end up in an intensive care unit, but I did have trouble with my organ systems, my heart flipped to atrial fibrillation for a while and I had the cytokine release syndrome for the first seven days after the CAT T's were installed — instilled — installed.

And then I had a secondary cytokine release syndrome three weeks later. I was hospitalized for fever and they didn't think it was an infection but they all assumed again it was CRS. And two days after that, now almost four weeks after the CAR T-cells, I had a side effect that they referred to as neurotoxicity. So my brain turned into a bit of jelly and I was rushed to the hospital and it was neurotoxicity. I returned home from Seattle at the end of January. So I'd been up there from October through January and then continued to get care here. And at the moment, as David said, I'm living without any medications for my CLL. I take other medications but at the moment seem to be big picture doing pretty well.

Andrew Schorr:
Same question. Do you feel CAR T and it was definitely a hurricane and ups and downs, do you feel looking back on it now, at least that it saved your life?

Dr. Saltzman:
Oh, absolutely. I don't want to be overly transparent, but they told me when I was up in Seattle that they didn't know how this was going to work and I better have my affairs in order. And if it didn't work, I was done. There was no other options for me. So yeah, I think it was a lifesaver. I will also say to the audience that it's not for the faint of heart and it does take not only some physical sacrifices to get through the treatment, but there are emotional sacrifices with family and frankly financial sacrifices because these CAR T therapies are not, you just can't walk to your local hospital and get CAR T so there are some issues with it

Andrew Schorr:
What a blessing these guys are with us.

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