Multiple Myeloma: Beth's Story - Episode 2
Beth goes into the challenges she faced regarding multiple myeloma diagnosis due to her atypical case and discusses the first treatments that she received.
Elie Fahed, MD: I guess they told you that you have myeloma. They treated you urgently with radiation.
Elizabeth Ayen: Right. Well, it took them about two weeks to actually diagnose it because I was not showing the M-protein in my blood or in my urine. It took them almost two weeks. They took it to the board—the oncology board at the University of Utah [Huntsman Cancer Institute]—and then they put me on 10 days of radiation to try to take care of that. They went through the sternum because I was having lesions on the sternum; it went right through. They were completely opposite each other because the tumor was on my T3. They were able to shoot the radiation through that and work both spots at the same time. Those are the only two places they radiated that time.
Elie Fahed, MD: Let’s explain to our listeners why it was an atypical case and why it was a hard diagnosis. In general, when diagnosing multiple myeloma, the majority of patients have what you call an M-spike. It is an extra protein; it is secreted by those cancerous cells that we can measure. When we measure it, we can see it is abnormal, that it should not be there. We go after it, and it gives us a diagnosis. You can do blood work. At some institutions, you can get the blood work done on the same day, whereas at other institutions it may take two to three days to get the results. If you see a big M-spike, then you know it is very likely myeloma. Your case, Beth, was very atypical. You had what we call a nonsecretory myeloma. It is a myeloma that has not secreted; there is no M-spike. Today, 23 years later, we still do not find an M-spike in your blood tests. That is why it is very unusual. How do we diagnose myeloma? Usually, we do the serum protein electrophoresis looking for that M-spike, and I do a bone marrow biopsy. Usually, for the bone marrow biopsy, I go through the hips. I am not sure if you had a hip bone marrow biopsy done.
Elizabeth Ayen: At that time, I just had one through my sternum, and that is how they found some myeloma cells—through my sternum. They did a few that went through my hips.
Elie Fahed, MD: Apparently, you had the lesion in your sternum, and that is why they went after your marrow. In the old days, I used to do it via the sternum. More recently, there were some cases where the needle went too deep, and there were some accidents that injured the vessels from the sternum. That is why, in 2020 and beyond, and even for the last 10 or 15 years, we have been doing a lot of bone marrow tests in the hip bone. This is where we get a sample of the bone marrow. With multiple myeloma, sometimes, it is not evenly representing all your bones. You can have a negative bone marrow in your hip, for example. You have an extra medullary lesion—what we call a plasmacytoma—like the one that was affecting your spine. That is why a negative bone marrow biopsy by itself does not rule out a diagnosis of plasmacytoma or multiple myeloma. At that time—let’s go back—you were told you have myeloma, and about 10 days later you had to meet with medical oncology for the first time.
Elizabeth Ayen: Right.
Elie Fahed, MD: How did that go? What do you remember from that encounter?
Elizabeth Ayen: After the radiation, they decided to go ahead and do the VAD treatment [vincristine, doxorubicin, dexamethasone]. The doctor said it would have pretty severe side effects: I would lose my hair; I would have nausea, vomiting, and a lot of fatigue, which turned out to be pretty true.
Elie Fahed, MD: You did have all those side effects, didn’t you?
Elizabeth Ayen: I had all of those, yeah.
Elie Fahed, MD: The good news for all the patients being diagnosed with multiple myeloma today is that we do not use this regimen anymore. We rarely use it. In fact, in my practice, I have never used it. I am a little younger. I have not been in practice for 23 years. We rarely use it these days. We have better treatment. You do not lose your hair, you don’t have the severe side effects of chemotherapy, and the treatment even works better. They have a much better efficacy. Did it work for you, the VAD [vincristine, doxorubicin, dexamethasone] regimen?
Elizabeth Ayen: It kept it at status quo. My lesions did not decrease in size, but they also did not increase in size. That is when the doctor recommended a bone marrow transplant.
Elie Fahed, MD: VAD [vincristine, doxorubicin, dexamethasone] is more typical of a regimen we still use now for—Adriamycin [doxorubicin] is a medication we use for breast cancer. That is why a lot of women lose their hair when we treat for breast cancer, because nausea can cause heart failure. It is really just a general regimen. We used to use something we call maturation treatment for multiple myeloma. In this day and age, we rarely have to go back to those old regimens that do not work well and are very toxic. In your case, the VAD [vincristine, doxorubicin, dexamethasone] regimen kept it at bay. It is hard to measure responses in your case because we do not have that M-spike that we follow over time. For every other patient, we measure the M-spike every visit, and we can see it go up and down, so we know if it is working. In your case, that is not a luxury we have. We have to rely on imaging and on your symptoms to see if you are feeling better.
This transcript was edited for clarity.