An Opportunity for Treatment in Relapsed Hairy Cell Leukemia - Episode 9
Robert J. Kreitman, M.D.: We’ve talked about the drugs that we use for early hairy cell leukemia. We’ve talked about MOXE, the moxetumomab pasudotox drug, and all the types of toxicities that you need to be aware of and can avoid with that drug. That drug, by the way, was produced at the NIH [National Institutes of Health], which we’re very proud of. Ira Pastan, M.D., and Dave FitzGerald, Ph.D., along with myself, were involved in actually testing and making that drug. And so there’s a lot of material that we could talk about. But what I want to move into now is seeing what your experience was with medical care in general. In other words, the doctors are not the ones who really see you all the time at NIH. There’s a team approach, so there are many other members of the team that you interacted with. What was your experience in interacting with the different types of people at the NIH?
Vince Fazio: The people here at the NIH? They’re very helpful.
Robert J. Kreitman, M.D.: What types of people do you remember interacting with?
Vince Fazio: Primarily the nurses on the ward where I was staying, they’re very helpful and pleasant, and yourself. That’s pretty much it.
Robert J. Kreitman, M.D.: And of course, there are people that schedule your visits.
Vince Fazio: Oh, phlebotomists and all of those people, yes. George in the bone marrow lab there, yes. Everyone’s been very pleasant and very nice to me. I’ve seen them so many times that I practically feel like they’re my friends.
Robert J. Kreitman, M.D.: There is something that we all are aware of in medicine, that there’s sometimes a fragmentation: this person does this piece, this person does that piece, and I do my piece. And sometimes if you don’t communicate well, then the patient ends up lost. I don’t know if you ever experienced that outside the NIH, but it is a challenge. And so at the NIH we really try to work together to try to communicate among the multidisciplinary team: nurses, doctors, schedulers, patient care coordinators, and people who do the different tests that we need done. We even have sometimes meetings with the floor nurses. Now, you mentioned that you received this as an inpatient.
Vince Fazio: Yes.
Robert J. Kreitman, M.D.: This is something that’s not absolutely necessary with hairy cell leukemia. It’s a little bit more convenient in your case to have gotten it as an inpatient because we were taking multiple blood levels of the drug. There were many blood samples that were needed to determine how much of the moxetumomab pasudotox was in the blood at different times. And we could follow different what we call pharmacokinetic parameters about the drug. But this is something that’s not really necessary for patients in general practice. So patients can get this as an outpatient, and we’ve had patients get this drug as an outpatient too, and it’s fine. But your experience was with the floor nurses and they knew what the drug was and you didn’t find too much confusion.
Vince Fazio: No, they made sure I always had a pitcher of water that I needed to drink.
Robert J. Kreitman, M.D.: Right. This is something that I think dovetails into a really important point with moxetumomab pasudotox treatment, and that is that we thought about the best way to make the drug safe for patients nowadays, getting it in private practice and general practice. We were thinking that if patients can keep track of how much they’re drinking hour by hour, have a little sheet every day, they can write down how much they’re drinking. And a member of the team, the multidisciplinary team that’s treating the patient, one member of that team can get in touch with the patient once a day: maybe it can just be an email, “How are you doing with drinking of the water?” and “How’s it going?” One of the things we found is that if patients are drinking that much water, the urine should look pretty clear and colorless. And when it starts getting dark, especially dark yellow, then we know that patients are getting dehydrated and then it’s time to really consider what’s going on. Why aren’t we getting enough water in, or why aren’t the kidneys working well? So you remember the nurses keeping very close tabs on you.
Vince Fazio: Absolutely.
Robert J. Kreitman, M.D.: This is something that’s not really possible in private practice, in general practice, but we don’t think it’s absolutely necessary. We think that is fine as long as the patient is keeping track of how much they’re drinking, or someone is helping the patient to do that. Sometimes a wife is really good or a husband is really good for helping a patient keep track of their intake. If there’s a member of the team who’s checking once a day to make sure that the patient is still doing OK, then I think it’s safe to give this drug as an outpatient. But I think it’s very important to have that happen. I know that some patients are not following that precaution nowadays that the drug has been approved, and I think the drug is a lot less risky if that precaution is followed. It’s one of the things I wanted to mention. It does also relate to the multidisciplinary nature of medicine, that one of the goals of that is to make sure that the patient is well taken care of. And sometimes the doctor doesn’t have time to do that himself or herself, but members of the team can kind of share that responsibility. It works very well.
Well, I want to really thank you, Vince, for sharing your story of hairy cell leukemia. I hope it was very useful for not only patients but even doctors and students of medicine who are looking at this. Thank you for being part of CURE Expert Connections®, and I hope you have a good rest of the day.
Vince Fazio: And thank you, Dr. Kreitman, for all your expertise and getting rid of the hairy cell in me.
Transcript Edited for Clarity