Update: A Leukemia Patient And CAR-T Study At NIH : Shots - Health News After trying one treatment after another for his leukemia, 20-year old Aaron Reid enrolled in a study to test an experimental therapy using modified cells from his own body.
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Update: A Young Man's Experiment With A 'Living Drug' For Leukemia

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Update: A Young Man's Experiment With A 'Living Drug' For Leukemia

Update: A Young Man's Experiment With A 'Living Drug' For Leukemia

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Let's follow along now as a man with leukemia finds out if an experimental treatment is working. Aaron Reid was on this program a few weeks ago. And now we check back again as he finds out results of a new therapy called a living drug at the National Institutes of Health. Here's NPR's Rebecca Davis.


REBECCA DAVIS, BYLINE: It's early in the morning. And 20-year-old Aaron looks like he's sleepwalking. His head is nodding toward his chest. His feet shuffle as he heads towards the pediatric clinic at NIH. His mom, Tracie Glascox, says Aaron woke up that morning in a lot of pain.

TRACIE GLASCOX: He's been complaining of pain in his ankles, knees and his arms.

DAVIS: Aaron's supposed to be getting a PET scan today, one of the tests he'll need this week so doctors can tell if the experimental treatment he's on is working.

GLASCOX: The PET scan requires him to sit still for a long time. And he doesn't feel like he can sit still unless he gets something to treat the pain.

DAVIS: Aaron goes into an exam room and lies down. His face is pale against the green blanket. It's a worrying moment. All that pain could mean Aaron's cancer is not responding to the treatment.


DAVIS: A nurse comes in to give Aaron an injection of pain medication.

UNIDENTIFIED NURSE: Let me see your line real fast.

DAVIS: When Aaron came to NIH, cancer was pretty much all over his body, this after 11 years of doing everything he could to control his disease. With few remaining options, he and his mom were really pinning their hopes on this experimental treatment. It's called a living drug because doctors use a patient's own living immune system cells that have been genetically modified to attack the cancer. It's worked really well in people with certain types of leukemia and lymphoma, but the cancer often comes back.

So Aaron's doctors tried something new - a different living drug they hoped would work better. That was about a month ago. And if the therapy is working, if those genetically-modified cells are doing what they're supposed to, doctors say Aaron's cancer should be coming under control by now. But because he's in so much pain, they're not going to be able to do the PET scan today to find out.

GLASCOX: They said they're going to be admitting him for pain management. It's real important to know what's going on with Aaron and why he's having all this pain.


DAVIS: The next day, Aaron is like a different person.

REID: It's a lot better than yesterday.

DAVIS: He does still have some pain.

REID: Actually, today, the only thing that bothered me is my arm.

DAVIS: But he handles the PET scan with no problem. Next, he gets a bone marrow biopsy. And finally, on Friday, the moment he and his mother have been waiting for - when they find out if the living drug is working or not.

NIRALI SHAH: All right.

DAVIS: Aaron's doctor, Nirali Shah, walks into his hospital room. Aaron perches on the edge of the hospital bed. He's wearing tan jeans, and sunglasses are propped on his head.

SHAH: So it's been a few days since I've seen you. We got a little bit of...

DAVIS: He and his mom listened intently to Dr. Shah.

SHAH: ...Correct. There absolutely is evidence that some of the areas of disease involvement that you had are gone.

DAVIS: That's good news. The cancer has disappeared from many parts of his body. And she tells him the genetically-modified cells they put into his body are still there and could keep attacking his leukemia. But - there is a but.

SHAH: Based on your PET scan results, we know that it's not enough because our hope would have been that we would see no signs of progression. And progression, I think, is really the pain that you were having, so it is a mixed response.

DAVIS: Bottom line - the living drug worked a little but not enough. Aaron still has leukemia. And while that's hard to hear, Dr. Shah is encouraging. There are other therapies he can pursue.

SHAH: This absolutely is not the end of the road.

DAVIS: She asks him, do you understand?

REID: I understand that, you know, the cancer is not gone but is reduced, which is awesome to me. I mean, having less cancer is always good. I understand that, you know, we will need more treatment 'cause there's never, you know, end of the road.

DAVIS: While Aaron's results aren't what he hoped for, they do tell Dr. Shah something important - that the dose they used is safe, which means she can continue to test this living drug, tweaking it, so hopefully, next time, it will work better for patients with Aaron's type of disease. Rebecca Davis, NPR News, Washington.


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