Dr. C. Ola Landgren (OL): You and I have met many times in my clinic, and we many times have talked about the management, but one thing I've thought about a lot is what it's like to have myeloma. I don't have the feeling of it, I don't know what it's like.
Michelle Ferguson-Cohen (MFC): Sometimes myeloma patients look so good, people don't realize that they're in pain or that they need help, or that sometimes they can't manage things. And also because their disease is a moving target, what's stressful about it is often the fact they don't know what's coming next.
In addition to being your patient, in addition to having myeloma one of the things that happened to me was that I became kind of an advocate, an agent of change and awareness for myeloma. Online I started a little community just to start spreading some awareness to the general public about what myeloma patients go through. The treatment and the patient support are really changed and evolved by awareness.
OL: I've thought about a lot like if you have a disease where the literature is very negative and says all these negative things and then all of a sudden everything changes and you're diagnosed with this disease and you read that, how much damage that kind of causes.
My job is a big part of me and it’s very close to my heart. The most important thing is to function as someone who can actually help people who need what I can give them. And to work at a place where you actually can do that, that's really the number one most important thing for me.
And the second most important thing is to be part of the development but that is necessary to be able to do the first thing.
MFC: Yeah so much has changed. And not like there's a good time to be diagnosed with myeloma but if there were, I would say that I was diagnosed at a very prodigious time. Because I was diagnosed three years ago and I feel like the entire landscape changed.
OL: Yes. So as the new technologies have evolved across the whole field of medicine people are sort of doing sequencing. Sequencing is a way to go through the whole code of a human being. So you can use this sequencing technology to sequence the myeloma cells.1
And now it's like going from a black and white TV to a high definition color TV, the newest model if you want. It's a huge step forward. So the ultimate goal really would be to try to understand what are the molecular subtypes of myeloma? So that really move us out from the old way of thinking of high-risk disease.
MFC: What would you tell patients about the future for them?
OL: I think what we see is just the beginning of a revolution in terms of development of new medicines.
I think we're gonna get there. There is a lot of work left to go to the point where we can say we have a curative treatment.
MFC: We’re counting on it, right?
MFC: Well I like that, that makes me happy.
1. Multiple Myeloma Research Foundation. Why You Should Have Your Multiple Myeloma Genome Sequenced. Available at https://www.themmrf.org/why-you-should-have-your-multiple-myeloma-genome-sequenced/. Accessed on January 22, 2018.