Create your Personal Health Record and unlock support built around you

  • Treatments and trials you qualify for
  • Education for your stage of care
  • Financial support for your medications
  • Solutions to your side effects
Video

Why is it important to be consulting with a myeloma specialist at relapse?

Posted by
HealthTree Logo HealthTree
• August 29, 2024

Description

Learn why it's important to consult with myeloma specialist at relapse in this video.

On this video

Transcript

Why is it important to be consulting with a myeloma specialist at relapse?

How will the myeloma specialist work with the community oncologist?

I think for a number of reasons, it's important for patients to at least have a specialist weighing in every once in a while. There's different ways of interpreting blood tests. A doctor who may not see it all the time may think that a rise in the Free Kappa indicates a relapse. But really, that's not the case. There's many reasons why the light chains can go up. If they go up together, for example, the kappa and the lambda, that's not a relapse. There's other reasons why they can go up.

There are some instances where a doctor may think the myeloma is relapsing, but in actuality, it is not a relapse. And there's some other explanation for why the tumor markers are going up, and that's why maybe confirm with the bone marrow biopsy. So, hey, you want to know if this is a true relapse? Interpretation of the labs is important to have a specialist do it.

The other reason is there are nuances for staging, and you really want to have state-of-the-art genetic tests on the bone marrow, next-generation sequencing, and FISH testing that's specialized. And the third reason is you want to make sure that you're choosing the treatment regimens in a strategic way. Because, yes, we have all of these treatments, but you really want to use your best treatments earlier on.

You also want to consider clinical trials. I think even at early relapses, it's important to think about what else is out there. Can I save the standard-of-care treatments for later? Because if you have access to a clinical trial and it works for years, you could always go back on the FDA-approved therapies. But if you use up all your FDA therapies and then, God forbid, you go into kidney failure or you're anemic later on down the line or your white count doesn't recover, well, you will not be eligible for a clinical trial in the future.

So I always say use a clinical trial even early on, whenever possible. It's good to have access at least once in a while to a myeloma specialist.

It's really important at relapse for a patient to work with a myeloma specialist. We have so many options for relapsed disease, and our guidelines, things like the NCCN guidelines, really put a list of options out there in myeloma. While it's common for us, and it's all that we think about, it's somewhat uncommon in the community. And I think seeing a specialist and having a myeloma specialist help define the path of therapy is optimal.

When we think about relapse disease, whatever decision we make at relapse, we're really making the decision at this relapse and thinking about automatically the next line of therapy. So whether if somebody has relapse disease and uses a Kyprolis-based therapy, we know that we have Pomalyst as the next line. If we use a Pomalyst therapy, we know we have Kyprolis as the next line. And so I think getting with a myeloma specialist who can put all of the data together to help define that treatment is optimal.

I know myself, and every myeloma investigator that I know, every myeloma specialist that I know works with the community physicians, with the community hematologists and oncologists. And the hematologist-oncologist that is local, that is near, that is convenient, partners with the myeloma specialist. Your local oncologist will take care of the treatment day-to-day and will collaborate with the myeloma specialist. The patient and family, the local physician, and the myeloma specialists all work together as a team.

I think it's extremely important, and our colleagues in the community recognize that. Taking care of myeloma patients, now that myeloma patients are living longer, is becoming complex. And so they are developing good partnerships with myeloma centers of excellence within their area.

Some areas have many different centers and many different myeloma experts, and that, too, becomes a blessing for our patients. Because one center may not have a particular study or option, and you can always consult and go to another center, too. I think that partnership is extremely important. Patients should be aware of that and not be shy about asking their physician, "Hey, can I seek another opinion?"

We're all learning; this is kind of like uncharted territory for us as well. And I'm sure you've heard a lot of docs where we are excited about the prospects of curability, but also sharing the fact that we don't know a lot about the longevity of these therapies just yet.

Well, I can tell you, everybody has their own style, but I have very, very close relationships with my referring oncologists. I text them, I call them, they text me, our nurses, our friends, the officers chat, and I like to update them. When there's good and when there's bad, when the patient's doing well, let them know, "Hey, so-and-so has had an excellent response. They're 60 days out from transplant. Feel free to start back on the Xgeva next month. We'll start the vaccines."

You just have to have very open communication and the ability to send labs back and forth. Sometimes the electronic medical records don't communicate, but labs are really important in myeloma, so you have to have the ability to access them. That's why I like to use a shared lab like LabCorp or Quest, or somewhere where both parties can easily access the labs and then really just have good communication. That's key.

Related Content