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Amplifying the CLL Patient Voice

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Published on January 3, 2020

A chance meeting between Patient Power community member and chronic lymphocytic leukemia (CLL) patient Mike Boston and Founder Andrew Schorr allowed for Mike to connect with the scientists behind his CAR T-cell therapy clinical trial and thank them for saving his life. Watch as Mike describes meeting the engineers of his T cells in what he recalls as a fantastic and moving experience. 

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Because of this meeting, I created new networks by meeting new CLL patients, and we decided to keep in touch by emailing each other for support.

— CLL Patient, Town Meeting

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Transcript | Amplifying the CLL Patient Voice

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 here near San Diego for Patient Power, living with CLL and having been broadcasting about CLL for a long time.  And there is Mike Boston from Clayton, Ohio.  Hi, Mike. 

Mike Boston:

Hi.  How are you today, Andrew? 

Andrew Schorr:

Fine, thank you.  So I just want to recap the story of how we met.  Esther and I were on vacation in Breckenridge, Colorado, and you and Sally, your wife of 39-and-a-half years, were in vacation in that area as well.  You drive up to us.  Sally spots us walking across a parking lot, and you all recognized us from Patient Power.  That was cool. 

Mike Boston:

That was so cool.  I mean, you know, coincidence, it was more than coincidence.  We were meant to meet. 

Andrew Schorr:

Well, and so Mike's story is he went through all sorts of treatment for CLL back in Ohio, but eventually was one of the very first patients to receive CAR‑T, chimeric antigen receptor T‑cell, therapy in a trial at the Seattle Cancer Care Alliance in Seattle with the University of Washington, and here we are now, now you telling your story to us. 

So, Mike, I guess things happen for a reason, right?  We met for a reason, so that you could tell your story and really we can amplify that because it inspires people.  And so I guess that's why we met, right? 

Mike Boston:

Yes.  And, as you know, we had the opportunity to travel to Seattle here about two months ago to meet the people that you know who actually created the CAR‑T cells. 

Andrew Schorr:

Right.  You could basically speak to the scientists who did the groundwork to save your life. 

Mike Boston:

We had that opportunity.  We met the scientists, the engineers, the workers that created those cells that went back into my body for the CAR T, yes. 

Andrew Schorr:

Okay.  So that's some of what we do at Patient Power, folks, is allow people to sort of amplify their voice.  And in the case of Mike, he actually met the people who engineered the cells that were used in the clinical trial that saved his life, and so that's an opportunity for many of us.  You don't think of it, but there are people in labs around the world who often have never met a patient. 

So, Mike, when you met those people and when they met you, it must have been quite a connection, because maybe they'd never met a patient before. 

Mike Boston:

I can't comment on whether or not they had ever met any patients before, but it was a fantastic experience.  There were people that were very moved to see us, to meet us, and to hear about the success that I had, and they were thankful for the work that they did that continued my life.  

Andrew Schorr:

Amen.  Well, we're delighted at Patient Power that we helped make this happen.  So, Mike, I'm so delighted we met that day in Breckenridge.  All the best to Sally.  And thank you for speaking out.  I really appreciate, and we wish you a long life and good health. 

Mike Boston:

Thank you.  Andrew.  And I'm thankful to have met you, and I hope you have a long life and a wonderful Thanksgiving. 

Andrew Schorr:

Thank you very much.  Okay.  We're recording this at Thanksgiving time.  Thank you.  We have a lot to be thankful for.  Mike and Andrew, and we wish everybody all the best. 

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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