Finding Reliable Information on Hairy Cell Leukemia
Anna Lambertson and Ken Jensen, members of the Hairy Cell Leukemia Foundation, reflect on available sources of information or treatment for patients.
PUBLISHED June 18, 2019
Ken Jensen: I’m Ken Jensen, a member of the Hairy Cell Leukemia Foundation.
Anna Lambertson: Hi, I’m Anna Lambertson. I’m the executive director of the Hairy Cell Leukemia Foundation. It’s good to be here with you today, Ken.
Ken Jensen: And it’s good to be here with you.
Anna Lambertson: We’re going to talk about how patients find reliable information about hairy cell leukemia, which we know is very important, particularly when someone has a rare disease like hairy cell leukemia.
Ken Jensen: Yes, we found that there’s an extremely high degree of thirst, I would phrase it that way, for additional and fresh information about hairy cell. We have a patient seminar every year, and it’s usually attended by about 100-plus patients. And these patients want to interact with other patients and ask questions of the doctors, who are experts in hairy cell.
Anna Lambertson: That’s right. Patients reach out to the foundation on a weekly basis. Almost every couple of days we hear from patients all over the world who maybe have been recently diagnosed, or maybe they’ve relapsed and they are truly thirsty for information. Often, particularly when a patient is first diagnosed, they have never heard of hairy cell leukemia. Their family and friends have never heard of it. They have to spell it out for those around them because it’s such a rare disease, and most people haven’t interacted with this. So they reach out to us wanting to find information, other than the information that they’re getting from their doctor. And we know how important it is for a patient and the doctor to stay in close communication, and certainly information that they find from us or from other organizations should never replace that information. But they’re really looking to increase their own knowledge and feel more empowered and more comfortable in asking questions to their doctor and in making decisions with their doctor about what treatment they pursue.
Ken Jensen: Yes, we found in particular at the patient seminars that a lot of the newly diagnosed patients feel comfortable that they are meeting somebody who has had the disease for a long time.
Anna Lambertson: That’s right.
Ken Jensen: And the same thing with their loved ones who have come to the seminar with them, that they feel much more comfortable if they’re meeting somebody in person, rather than just hearing about them on TV or some other way, who has the disease.
Anna Lambertson: That’s right. I do think there seems to be a lot of comfort that comes from meeting other patients who have experienced the same disease and walked or had the same journey, even though we know that even between patients, there are differences in how patients experience hairy cell leukemia. They may have a different diagnosis. Some patients relapse, others don’t. Some patients have complications. But the similarity in symptoms I think allows patients to learn quite a bit from other patients. And as you said, they’re thirsty for information, and they do find a great deal of comfort from interacting with other patients who have had the same experience.
Ken Jensen: One of the questions we get is how have patients become more involved in their own treatment or in other ways? And I found out myself, being involved in what we have, that the foundation has a data registry for patients. We now have over 300 patients in this registry, and this is a way that a patient can provide information that can be used for research that will help potentially himself but also other patients. For example, I was in the cladribine trial back in 1993, and cladribine then became one of the primary methods of treating hairy cell initially. And that treatment with cladribine, it was mainly done by other people in those trials and allowed me to get into remission for 16 years.
Anna Lambertson: Which I think really speaks to the importance of clinical trials and patients participating in clinical trials. We do have patients reach out to us on a regular basis asking what clinical trials are available to them, and certainly we always encourage them to talk to their doctor and their health care team about clinical trials for which they may be eligible and could be a good fit for them in their particular diagnosis or treatment needs. And we know that clinical trials can play a really important role in the development of new drugs and new treatments.
And in hairy cell leukemia, like many rare diseases, we know at least now we don’t have a cure, there are effective treatments, but there’s still no cure. While patients can experience very similar symptoms, patients do have very different experiences along the way, as we’ve said. And we need to have treatment options that can address patients’ unique journeys with hairy cell leukemia. Some patients respond well to standard treatment, to cladribine, for example, while others haven’t, or they did at first and then relapsed. So clinical trials play such an important role in helping us, in helping doctors and researchers, develop new treatments.
Sometimes patients are a little skeptical, perhaps a little nervous about joining trials. And we know that the outcome of that trial may or may not help them. It may help other patients down the road. But what I’ve heard from patients who have been in clinical trials is this really gives them a feeling that they are playing a role in their diagnosis and their treatment.
Ken Jensen: Yes, I might add to that.
Anna Lambertson: Please do.
Ken Jensen: I am also involved, not in clinical trials but in research studies and other registries for general cancers. And the research that’s done in general cancer sometimes can be applied to hairy cell, and some of the drugs that are used in hairy cell now were actually generated in another manner. So that for example, I’m in a registry for family cancers with LLS [Leukemia & Lymphoma Society], the NIH [National Institutes of Health], and the University of Chicago. And that makes me feel better that somehow I’m going to be helping other people.
Anna Lambertson: I think that’s a really important distinction to make as well. These clinical trials will impact drug development and treatment development for hairy cell leukemia but could also very well impact treatment development for other cancers, as you point out. I think that’s a very important point to make.