Published on January 20, 2020
- Broad information available about myeloma can be a blessing and a curse, because each case is different.
- Patients are more educated nowadays and play a strong role in making decisions with their doctors.
- Understanding the myeloma profile is really critical to interpreting myeloma lab results.
Without the right context, “the availability of information can be both a blessing and a curse” says expert Dr. Nina Shah from the University of California San Francisco (UCSF) Health as she explains ways multiple myeloma patients can work with their care team to develop a deeper understanding of their condition. Here, myeloma patient advocate John Rosengard and Dr. Nina Shah discuss ways newly diagnosed patients can become empowered and make more informed decisions. Watch to learn more about understanding the myeloma profile, interpreting lab results and learning about options.
This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Celgene Corporation, Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control and Patient Power is solely responsible for program content.
Transcript | What to Know Before Making Myeloma Treatment Decisions
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The treatment selection process I found to be enormously important because, again, it’s the first part of fighting multiple myeloma directly. To piggyback off what you just said, some people might think that having a clinical trial as their front line or first treatment is a little unusual, but I didn’t think so. My initial reaction and research was that the T-cell therapies or the CAR T treatment option, which was still incredibly new and innovative in 2017, was really for serious relapse and refractory cases. And those patients were getting access to CAR T-cells first, and that counted me out as a frontline or a first-time newly diagnosed patient.
But also, some evidence was really coming out. The three-drug therapies were adding years of high-quality life as opposed to the two-drug therapies that were used not that long ago. The research, however, was a little contradictory because none of the information that I found in that first faithful Google search was dated. So, I would find information from 10 years ago that was incredibly pessimistic about the options and the number of years of high-quality life, as well as the, I’d say, turnover in treatment options and the aggressive number of clinical trials that were being offered within the Myeloma patient community.
So, for newly diagnosed patients and their caregivers who might notice that treatment selection is a vital first step of the process, Dr. Shah, that requires learning a new vocabulary and acting when clearer data is ready and available. What general processes do you try to bring to a new patient when they’re just getting started on this journey?
Yeah, I think you make a really good point that the availability of information can be a blessing and a curse. So, a lot of my patients—actually, even in the past 10 years, I’ve noticed a difference, that people coming in and they know more about the disease because of things like Google and other information portals that we have, which I think is great, but also absolutely needs to be digested with a little bit of context from each patient’s particular case.
So, I think one of the main things that we, as providers, can do is educate the patient on how this disease comes about, and that’s one of the first things I do when I meet a patient. Saying, “Okay, do you know what you have? Has someone told you?” Because even if not everybody has a medical or science background, it’s pretty simple to explain that myeloma itself is a cancer of one of the immune cells and what the things happen—why they’ve happened because of that particular cell growing. And if patients can understand that, then they can look at their labs and interpret their data because, remember, now, we all have access to our labs, which a lot of my patients didn’t have 10 years ago, and we look.
We look at our little portals, and we try to see what the lab values are, what the anemia is, etc. And one thing that’s really critical to interpreting myeloma labs, for many patients, not all, is understanding the myeloma profile, which includes the SPEP, or serum protein electrophoresis, and then the light chain, the free kappa, free lambda, and sometimes the urine protein electrophoresis. And learning how to read those three things can actually help a patient feel very empowered, because they don’t have to wait for every visit to talk to the doctor about their results. And the honest truth is, sometimes, every doctor doesn’t have time to email every patient after every result. So, it’s a good way to get educated upfront, empower the patient, and say, “Okay, I now know how to interpret my labs, and I will work with you. You and I are going to work together. If we see something abnormal together, we’ll chase it.”
And similarly, the bone marrow results—because those are also—I mean, even doctors have a hard time interpreting those. It’s important to go over the actual words that mean something to both the doctor and the patient at the initial diagnosis. And I think that’s another way that people can be empowered as they start their journey.