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Diffuse Large B-cell Lymphoma Clinical Trial Success Story

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Published on August 10, 2020

A Selinexor Clinical Trial for DLBCL

Diffuse large B-cell Lymphoma patient Ian Spencer of Lancaster, UK, joins Patient Power co-founder Esther Schorr to discusses the clinical trial involving the drug selinexor, recently approved for relapsed/refractory diffuse large B-cell lymphoma in the USA. Ian discusses his complete response to the drug, drug protocol and the side effects. Ian's clinical trial journey was not easy, but he is grateful for his new normal and for all of life's milestones he reached because of it.

Disclaimer: This program is sponsored by Karyopharm Therapeutics. This organization has no editorial control, and Patient Power is solely responsible for program content.

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Transcript | Diffuse Large B-cell Lymphoma Clinical Trial Success Story

Esther Schorr:
So I'd like to introduce you to a wonderful gentleman who is in England, correct?

Ian Spencer:
Correct.

Esther Schorr:
Correct.

Ian Spencer:
Yes.

Ian’s DLBCL Diagnosis and Prognosis

Esther Schorr:
Ian Spencer. Ian, thank you for joining us today. We really appreciate it. I'm very envious of the beautiful garden that you have behind you. It's very lovely. So, Ian, just a quick summary of kind of your backstory. If I understand right, you were diagnosed in 2014, and then-

Ian Spencer:
Yes.

Esther Schorr:
... in 2015, you were working with a specialist in ... Was it in Blackpool?

Ian Spencer:
That's right, yes.

Esther Schorr:
Is that right? At the time, the news wasn't so great. He gave you maybe six months to live if you didn't have treatment.

Ian Spencer:
That's right, yes.

Joining the Selinexor Clinical Trial

Esther Schorr:
You found out that when the chemo wasn't working, then you found out ... You and your wife found out about a trial in Liverpool. Is that right?

Ian Spencer:
My specialist at Blackpool happened to know the specialist at Liverpool on a personal note, and he knew of a possibility of this trial coming up. He referred me to the specialist in Liverpool to go and have a talk to him about the possibility and to see if I met the criteria that was needed in order to go for this trial, because basically, other than that, as you said, I was told about six months to live. If I had radiotherapy at that point, it might have prolonged my life, but it wouldn't necessarily have cured it. So, his recommendation was, "Go and see what the trial drug is like, and see whether or not you're willing to go forward on that one because, basically, you've got nothing to lose."

What Were the Qualifications to Join the Selinexor Trial?

Esther Schorr:
So, Ian, you qualified for this trial. What were the qualification criteria? What were they looking for?

Ian Spencer:
They were looking for a certain age range, so 50 and over, but not going too high up. So, I would think, really, they were looking between 50 and 65 age group. They were looking for somebody who was fairly fit, who didn't actually have any other problems, as such. So, in other words, I had to be healthy apart from the cancer that I had. That was the main criteria. Obviously, they did various tests to see how healthy I was, but... and obviously, the other criteria was that no other treatment had worked.

Esther Schorr:
You started on a trial with ... I guess it was called selinexor (Xpovio)? What was the protocol? What did you have to do?

Ian Spencer:
I went in, and they needed to do, if you like, a pre-summary of where I was up to. So, I had scans and I had various blood tests, and I had a biopsy. So, then they knew what was before. So, obviously, they could then measure what happened from there. On the first instances, I went in and took the drug, and then they... Again, they did a blood test before I took the drug, a blood test after I had the drug, and kept me in for most of the day to see how I responded. That happened for about the first three or four times. I had to take it twice a week, so... At the beginning of the week, I took it at the hospital. The second part of the week, I was allowed to take it at home.

Esther Schorr:
So, this was not an IV, an intravenous drug.

Ian Spencer:
Nope.

Esther Schorr:
This was a pill.

Ian Spencer:
Tablets.

Esther Schorr:
Tablets, so-

Ian Spencer:
Yes.

Did You Have Side-Effects on Selinexor?

Esther Schorr:
How did that go? Were there side effects?

Ian Spencer:
Yes, there were, but not as bad as chemo by any means. It was still pretty horrible, but it wasn't as bad. I felt very, very tired still, and I had toilet problems, and I still had sickness problems, particularly in the evenings, but it ... As I said, it wasn't as bad as the chemo. Of course, one of the best things was I didn't have to stay in the hospital every time. Once they'd done the first bit, I was then able to go home and take it, and I only had to go in every four weeks just to be checked. That makes so much difference to sitting in a ward, having the chemo intravenously. Psychologically, it's wonderful in comparison.

What Happens When the DLBCL Trial is Over?

Esther Schorr:
So, Ian, now that you're done with the clinical trial itself, what is your daily protocol now? What medicine do you need to take, and is there anything else that you need to do?

Ian Spencer:
Right. Basically, I take one tablet most weeks, and that's really the only protocol that I've got. I don't even have to go for blood tests anymore, but part of the reason for that is, as I said, because of the coronavirus. That has affected what I would normally do, but they were actually looking to actually stop the medication completely, but have an agreement with the pharmaceutical company that if, by any chance, that the lymphoma came back, I could immediately go back on the trial drug or the drug as it stands now, which is being licensed. So, I think that is what the ... my specialist is looking into, and to see if we can get that agreement. Then, it would mean I would be drug-free, which would be even better.

Esther Schorr:
So, now, you're five years out from the trial, yes?

Ian Spencer:
Five years, yes.

Esther Schorr:
What do you think about that?

Ian Spencer:
Oh, I... very relieved. It's wonderful. I have a grandson who was expected when I was told I had only six months to live, and he is now four. So, that is a real miracle. I never thought I'd live to see him, so-

Esther Schorr:
Awesome. Delightful.

Ian Spencer:
Yeah. So, it's things like that, and basically ... You realize that life is a gift and each day is a gift, and I always try and remember it that way. So, yeah, it's good. Life is good. 


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