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You Have Multiple Myeloma, Now What?

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Published on April 30, 2020

Key Takeaways

“It's a life-changing event, being diagnosed with myeloma, but fortunately many patients do very well,” says Dr. Frits van Rhee, a multiple myeloma expert from the University of Arkansas for Medical Sciences (UAMS) Myeloma Center.
 
In this segment from our recent virtual town hall meeting, Dr. van Rhee, Dr. Guido Tricot, Dr. Shebli Atrash and Nadine Baxter, an advanced practice nurse, share how to start your myeloma journey on the right foot. They discuss treatment options, second opinions, the importance of seeing a specialist and why myeloma is not considered a hereditary disease. Watch now to learn from our panel of experts.

This program is sponsored by Takeda, Janssen and Karyopharm. These organizations have no editorial control, and Patient Power is solely responsible for program content. It is produced by Patient Power in partnership with UAMS Myeloma Center. 

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University of Arkansas for Medical Sciences Myeloma Center

Transcript | You Have Multiple Myeloma, Now What?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Maddie Hunter:
What I'd like to have us move towards now is what would typically be the first step that we take on the roadmap, which is to have a short discussion of what is myeloma. And I'd like to start with you, Dr. Atrash. If you were going to give a simple definition of what myeloma is to someone, what would you say?

Dr. Atrash:
So it's a blood cancer that comes from one component of the blood system called plasma cells. Plasma cells are the cells in a regular situation or a normal situation, they produce a lot of immunoglobulins that help us fight infections. In multiple myeloma, we have lots of one type of 
plasma cells.

Only one type takes over the whole bone marrow and, as it started to grow, it changed the environment inside the bone marrow, to the point that osteoclasts, one type of the bone cells, that it's job is to chew on this bones, start chewing on the bones and leaves holes in the bones.

And the symptoms that comes after that, anemia is the first one. It's summarized by the term CRAB anemia, high calcium, renal insufficiency as you get all those proteins sitting in the kidneys and the bone disease we talked about early on. Now, for the new definition, they added, clearly if you have a risk of having more than a 50 percent chance of developing an active myeloma within two years, we call it, "You know what? We're not going to wait for a person to break a bone before we call it an active myeloma. And if the risk is about 80 percent in two years, we're going to call it active myeloma right now and treat it right now."

Maddie Hunter:
So, it sounds there's an evolution of plasma cell growth in our bodies. Dr Tricot, I want to ask you a question that has been on my mind ever since I was diagnosed, because my dad had myeloma and a lot of people are concerned about this, so is myeloma and the sequence that we described, is it genetic, is it hereditary?

Dr. Tricot:
There are certain families that have a higher risk of myeloma but that's less than a 2 or 3 percent of all the myeloma patients have a myeloma in more than one generation. To call it familial myeloma, you need to have three generations that have myeloma. Or at least two generations, and in one of the generations more than one member who has myeloma. If you have myeloma and your sister has myeloma, and your father has myeloma, that would be, we would call that genetic.
 
But for the large majority of the patients, there's not a strong 
genetic and familial incidence. The probability that they indeed will find other members with myeloma is somewhat increased, but it's still extremely low and not worth checking for it.

But, in general, myeloma is probably related to the fact that certain patients have a certain gene pattern that makes them more vulnerable to myeloma and, on the other hand, exposure from the outside that causes toxic effects. And if you have the gene pattern, but you don't have the exposure, you don't get myeloma. If you have the exposure, but you don't have the gene pattern, you also don't get myeloma. You really need to have both of those factors, and there's a certain gene pattern that increases the risk of developing myeloma and exposure for the patients to get myeloma.

Maddie Hunter:
Well, I think it's interesting, and I bet you're watching closely the PROMISE study and things that are being looked at around some of the questions that you've described. So I think where we're learning more about this, but I guess I would concur with you that we don't want to have people be afraid.

And at the same time, I think this just is one of those questions that is so fascinating to me, and it is unfolding. We could again talk about all the different aspects of myeloma now, but we're going to take another step or two on our journey. And we're going to look now at when you're diagnosed, Dr. van Rhee, I'm curious about, you know, when you're meeting somebody for the first time, what are the factors that you consider in terms of deciding what treatment recommendations to make?

Dr. van Rhee:
I think the first thing you want to do is set the goal of therapy. What is the goal of treatment? Some patients may be curable with a more intensive therapy. Some patients are elderly, and you would like to control the disease and have good quality of life. So setting the goal of therapy is very important.

A patient who is fit and his early 70s might be a transplant candidate. Obviously, this is determined by what they call co-morbidities, which is a difficult word for having other medical conditions like heart disease, renal disease, lung disease. And then also a very important aspect is the biology of the disease, by which I mean, how aggressive is the myeloma? Myeloma is really a complicated disease, and some patients have very easy myeloma, and others have highly aggressive myeloma, and they require a differential treatment approach.
 
Then also if you're dealing with somebody who's been previously treated, you need to ask the question, "What prior therapies the patient has had, what the side effects were, and how good their bone marrow is still functioning as a result of prior therapy? And, what treatment they can tolerate.”

So there are a lot of factors which require addressing in order to determine an optimal treatment regimen for a given patient. The one thing I would like to say to everybody who is on the webinar who is newly diagnosed, that's, "With good therapy many patients have a very good outcome." So it's, it's a life-changing event being diagnosed with myeloma, but fortunately many patients do very well.

Maddie Hunter:
Well, this is great to hear and in our support group this is one of the first things that people want to know, is that there's encouragement and signs of hope. As a patient joins the team that is going to help them, they need to understand and we all, being educated makes us a better team player with our doctors and our clinicians. Nadine, how do we stay informed about all the options that Dr. van Rhee was just describing, so we can fully participate?

Nadine Baxter:
Well, certainly, about when I started with myeloma, I was told that the patients were oftentimes a lot smarter than we were. They have access or stay online with the International Myeloma Foundation, they have group support through group meetings in which they attend about what's new and on the horizon as far as treatment options. We certainly have our responsibilities when patients present to the clinic, we review those options with them so that they have a complete understanding of them or the process in itself.

Maddie Hunter:
Great. Well, I think this is a long journey to keep informed and then to stay informed as things are changing so much. Dr. Tricot, when do you suggest that patients get a second opinion about the treatment choices that they have available to them?

Dr. Tricot:
One of the most important issues is that the patients feel comfortable with their doctor. And to feel comfortable they need to feel like the doctor has experience, has done this many, many times and knows the ins and outs of myeloma treatment. And when I see a new patient and I do a workup, I try to be as complete as possible. Treating myeloma is like a war and the more you know about your enemy, the less likely it is that you will be surprised.

So, it's important that the patients really feel like the doctor has a good grip on the disease and if they don't feel that, it's important that they go for a second opinion. You need to feel extremely comfortable that your doctor has the right credentials to treat you and for most of the patients, having a second opinion in an academic center would be the right thing to do and especially in centers that are specialized in myeloma.

Maddie Hunter:
So, what you're suggesting is that a 
second opinion helps if you don't have confidence. If you're concerned about the depth of preparation or training that a doctor might have. And, Dr. Atrash, I'm wondering, are there other circumstances where you would recommend a second opinion? I imagine that you would hope that a patient would be confident in you, but what other reasons might there be that don't have to do with a concern about the competence of the doctor?

Dr. Atrash:
I think it's always good to get another opinion, as long as this opinion is from a myeloma physician. Most of the multiple myeloma patients are getting treated out in the community. I think we're talking about 85 percent, which is such a high number. However, there are few myeloma-only centers that are spread out all over the United States, and I think it's very important to touch base at least for establishing care with one of those centers for many reasons.

Maddie Hunter:
I know so many patients that are listening to this webinar do not live near a myeloma center of excellence like you've just suggested. Do you have a sense that virtual consults or these tele-consults are available by specialists, independent of what's happening with the virus, that people could consider remote consults as a way to get second opinions from their local hemo-oncologists or whoever they're seeing?

Dr. Atrash:
It certainly has its role. It can help a lot. A phone visit or video visits or telemedicine has its role in multiple myeloma in trying to avoid sub-therapy or sub-optimal therapies. However, I still think there is a value of an actual clinic visit, especially now in multiple myeloma. We can collect the stem cells, and we can store them. So it would be nice to get involved with a center of excellence as early as possible, because late in the game it will be more and more difficult. And I think both have their roles, whether it's telemedicine or face-to-face.

Maddie Hunter:
I also think it's very interesting to get people at centers of excellence talking with one another and finding out that there's an art to the practice of myeloma. And sometimes different physicians have different points of view about what's the next possible step.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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