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

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Published on January 7, 2020

After being diagnosed with an aggressive form of chronic lymphocytic leukemia (CLL)  in 2007, Mike Boston initially thought it was time to get his affairs in order. Mike explains how after running out of treatment options, and with the help of his doctor, he went to the Seattle Cancer Care Alliance (SCCA) for an early, experimental CAR T-cell therapy clinical trial. Watch as Mike, more than 10 years after diagnosis, shares his treatment journey and experience participating in a CAR-T trial.

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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You share your lives, your thoughts, your time. I am overwhelmed by all the help I have received to help me understand this disease. I can't thank you enough!

— Mary Ellen, CLL Survivor

Transcript | A CLL Patient's CAR T-Cell Therapy Success Story

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? 

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

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

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. 

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? 

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. 

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. 

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. 

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. 

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? 

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.

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