A CLL Patient's CAR T-Cell Therapy Success 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:

Hello and welcome to Patient Power.  I'm Andrew Schorr in California, and I want you to meet my friend Mike Boston who joins us from Clayton, Ohio, right, Mike? 

Mike Boston:

That is correct. 

Andrew Schorr:

Okay.  So let me tell you a little bit about Mike.  The story you're going to hear is the very compelling story of somebody who's been in one of these CAR‑T trials.  This one for chronic lymphocytic leukemia, which both Mike and I have and maybe he had.  We're going to talk about that. 

And CAR‑T of course stands for chimeric antigen receptor T‑cell therapy, where they basically make a drug out of your own cells, combine it with a virus I think.  I don't know how they do it exactly, and then it targets your illness.  So we're going talk about that in a second. 

So, Mike, just a little bit about you.  So married to Sally 39-and-a-half years, right? 

Mike Boston:

Yes.

Andrew Schorr:

Four grown kids, no grandkids yet.  And back in 2007 physical and swollen lymph nodes, and you're told you have leukemia, right? 

Mike Boston:

That is correct. 

Andrew Schorr:

Must have been, like for any of us, it's a real shocker, right? 

Mike Boston:

The first thing I thought about is getting my affairs in order because I just‑‑you know, whenever you hear these words you have cancer you just don't know whether you're going to make it or not. 

Andrew Schorr:

Okay.  Now, as you can tell, folks, this is 2019, around Thanksgiving as we're recording this, Mike has a lot to be thankful because here he is.  But when he was first diagnosed in 2007 he thought that could be it.  And many of us who have been diagnosed with cancer when we first hear‑‑we're told we have it, that's what we're thinking short, short term, short lifespan.  This is a happier story, but it's because of clinical research. 

So, Mike, from 2007 to roughly 2016 you went through‑‑you just kept going through many treatments with shorter and shorter remissions, right? 

Mike Boston:

That is correct.  I went through three different trials, and each time I relapsed the time between treatment and relapse was much shorter.  It went from 24 months to 21 months to 16 months. 

Andrew Schorr:

And then you even had one treatment, a dose of one of the medicines, only worked for a week, right? 

Mike Boston:

That is correct.  When I was on the venetoclax (Venclexta) I was getting favorable results for about a week, week-and-a-half before the improvements stopped. 

Andrew Schorr:

Okay.  So CLL is very variable.  So Mike had what proved to be a very aggressive kind of CLL, and you didn't really have a watch or wait period.  Your doctor when they did further testing way a back in 2007 said, we have to start treatment now.  So you were on a train that was moving along, made a lot of stops, but it just ended up never being effective for very long. 

So, okay.  That brings us to 2016 where even though you had four matches for a stem cell transplant your Dr. Jones at Ohio State said, you're going to die if you have that transplant, right?  You're not going to survive. 

Mike Boston:

Well, they took me off the transplant list.  Even though I had four donors and it just so happened the four donors were all my siblings.  I come from a large family with nine brothers and sisters.  Four of them were matches.  Two of them were perfect matches.  We were just waiting to get my disease under control before starting the stem cell transplant.  But in June of 2016 my doctor said, we have to cancel the transplant because we can't get your disease under control. 

Andrew Schorr:

Okay.  So, folks, that's what you call seemingly at that point out of options.  Now, the good news is there are clinical trials that continue.  Often the first people who are in trials are the sickest people.  This was Mike.  He was accepted in a trial at the Seattle Cancer Care Alliance with our friend Dr. David Maloney looking at could there be CAR‑T for CLL, could it work for someone like Mike. 

And so, Mike, at the end of July you found yourself going from Clayton, Ohio, in 2016 with Sally and ended up you were in Seattle for two-and-a-half months, right? 

Mike Boston:

Yes.  We moved out to a facility out there.  They call it the transplant house.  It is just a block or two away from the University of Washington Medical Center, about halfway between the University Medical Center and Seattle Cancer Care Alliance. 

Andrew Schorr:

Okay.  So idea with CAR‑T is they take your own cells and they combine it with a linker, I forget how they call it, and then basically they're going to re-infuse that.  So in early August of 2016 they took your cells.  Several days later, however‑‑I forget what the interval was‑‑then they have engineered your personal drug and they infused it back.  And you had high hopes for that day, I'm sure. 

Mike Boston:

Yes.  It's about a 21‑day period for them, between when they take your T cells out or your blood cells out, it's about 21 days before they re-infuse you with the new CAR‑Ts, which are just modified T‑cell blood cells that they re-infuse back in you, and of course that's the start of your curing process.  But oftentimes when they do that most patients become ill, run high fevers, and they have a lot of problems during that process of the CAR‑Ts doing their job. 

Andrew Schorr:

Right.  Now, one of those is this cytokine storm, right, which they've been learning how to manage, but that can have you have transient neurologic issues.  What happened to you?  Now, they're getting a lot better at that, but we're going back a few years now.  What happened? 

Mike Boston:

Well, after the CAR‑Ts were injected, infused into me they said, if your‑‑and I believe it was 100.5 degrees, if your temperature gets above 100.5 get to the hospital.  So it took three days before my fever finally got to 100.5.  They admitted me to the hospital, and for the next week-and-a-half they were just trying to keep my fever under control.  They were‑‑of course there were lots of things going on in my blood that I don't have all that information in front of me, I became very ill. 

They packed me in ice one day because they couldn't give me steroids to bring my temperature down.  So they packed me in ice, so I literally had ice bags all around me while I was in the bed.  I started losing a little bit of control in terms of my bowels.  I became‑‑a little bit of diarrhea, but then also had some constipation, and they just watched me.  I didn't want to eat.  I didn't want to get up.  I didn't want to talk.  I didn't really want to do anything, but they wanted me to be as active as I could to verify that something good was going on. 

Andrew Schorr:

Well, okay.  So we should mention two things.  And I know Dr. Maloney well.  So since then they've learned some newer strategies to deal with what was going on, which was basically these cells that were infused, your engineered cells, were at war with your cancer.  There was like a war going on in your body, a very‑‑like a nuclear war, a big war. 

Mike Boston:

Yes, very much so.  So the fact that I was having a storm was a good sign, but they wanted to try to keep the storm or keep the nuclear war, the neurologic attacks on my body under some control because if they got out of control I could have some serious neurological damage that they believed would be reversible, but they weren't certain.  So they just kept a close eye on me. 

And me, I mean, I'm just going along for the ride at this point.  I was ill, my wife was with me daily, and I just didn't feel like doing anything except looking around, eating a little bit.  I just‑‑there was a war going on inside my body. 

Andrew Schorr:

All right.  Well, the good news is, folks, that‑‑couple things.  They've been refining CAR‑T therapy as they learn.  It's a clinical trial, right?  And here Mike is sitting here.  So, Mike, you went through this storm, you got through it, your body recovered, now you go to meet with your doctors based on testing of your blood, looking for the CLL.  Your four kids are on a conference call.  Tell us about that event. 

Mike Boston:

Well, the kids had come out to visit me.  I had three adult children that were able to travel, one in college, one in Denver, Colorado, and one in San Francisco, and they had each come out to visit Sally and I while we were in Seattle.  So they were very anxious about how I was doing.  We knew that we were going to get the results from all of the PET scans, the blood tests, the bone marrow biopsy which had taken‑‑after the storm we knew that we were going to get those results back on October 3rd. 

All of our children wished they could be with us on October 3rd in Seattle, but they couldn't.  So my daughter through work was able to arrange a conference call where all three children called in to Sally and I while we were going the results from the doctor on October 3rd, and we're all sitting at this table, or my wife and I were sitting at this table anxious to hear the results with the two other children‑‑or the three other children listening by phone. 

And of course the doctor and the staff came in.  They went over the results.  They talked about the PET scan.  They talked about the bone marrow biopsy.  They talked about all the blood tests, which I was getting daily blood tests, and they announced that they could not find any leukemia cancer cells in my body.  And I could almost hear my children on the distant end screaming in yelling and crying at the same time.  So it was really a wonderful experience. 

Andrew Schorr:

Mike, we all take a great deal of joy that since 2016 you've had no sign of CLL, and you've been able to go on with your life.  What would you say to people who may be watching where they may be in that more aggressive CLL situation where they should consider a trial like this, which is experimental CAR T-cell therapy? 

Mike Boston:

My condition had worsened to the point where I really didn't have many options.  All of the newest clinical trial drugs had ceased working and I was aware of CAR‑T.  And when the doctor asked me if I wanted to participate in CAR‑T it didn't take me more than three seconds to say yes.  CAR‑T saved my life.  I do not believe I would be here if it were not for CAR‑T. 

I would recommend anyone who is faced with CLL or for that matter other leukemias and their options are dwindling, I would do the CAR‑T.  My results from CAR‑T were absolutely perfect, better than my results would have been from bone marrow transplant.  I had learned that my‑‑the survival rate of CAR‑T is better than the survival rate of bone marrow transplant. 

So anyone who's listening, I would highly recommend CAR‑T.  I would do it again in a minute even though I did have some storm, the cytokine side effects that were occurring during the process, it saved my life.  I would highly recommend it to anybody. 

Andrew Schorr:

Okay.  And again this is a very personal discussion people have to have.  I'm living with CLL.  My CLL has not gotten to that point, but I know now that there's research going on.  And you're a pioneer, Mike, having been in a trial and an inspiration to us.  But should I need it, this is something I need to consider.  And I want to thank you. 

So, Mike, now you've got these kids.  You're waiting for grandkids.  So as we are in Thanksgiving time you have a lot to be thankful for, don't you? 

Mike Boston:

I do.  And my children have given me a lot of reason to want to go on, and it was so fulfilling to hear‑‑and I had gone back and looked at some of the letters.  My son recently was married, and he told me in a letter that he had prayed to God that I would be there for his wedding, and I was.  And I had actually met his fiancée while I was in Seattle.  She came out to Seattle when my son came out to visit, and he was thankful that I was able to walk him down the aisle at his wedding, and it's only true because of the CAR‑T. 

Andrew Schorr:

Okay.  So we have to be thankful for the researchers who dedicate their lives to saving our lives. 

Mike Boston:

Yes.  Yes.  And they're the heroes in this world in my mind.  They're the ones that come up with the technology that keeps us alive. 

Andrew Schorr:

Mike Boston, thank you for being with us, and thank you for your good health.  I'm just so grateful this has worked out.  And thank you for being a pioneer in really helping the researchers gain more knowledge so that it continues to be refined for all of us.  Thanks for being with us, Mike. 

Mike Boston:

You're very welcome, and I am glad to do this.  Any time I can be an inspiration to anyone who's going through some cancers I would be more than willing to do it.  And I want to thank you.  I'm glad we met, and I hope you have a wonderful Thanksgiving. 

Andrew Schorr:

Thank you.  Andrew Schorr with my friend Mike Boston.  And 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.