Marcella shares how she met her diagnosis of multiple myeloma as Kenneth Shain, M.D., Ph.D., considers her experience in relation to other patients with multiple myeloma.
Kenneth H. Shain, M.D., Ph.D.: Hello, and welcome to this CURE® Expert Connections®. I’m Dr. Shain. I’d like to welcome one of my patients, Marcella, who is here to share her journey with multiple myeloma. Welcome, Marcella.
Marcella Worrell: Hi, Dr. Shain.
Kenneth H. Shain, M.D., Ph.D.: Thank you for being with us and sharing a little of your personal time and journey with us and everybody else who’s going to watch this video. Thank you for your time.
To get everybody on the same page, we want to start with a brief overview of what multiple myeloma is before we get too far down the road. You have to remember that multiple myeloma is a disease of malignant plasma cells. About 35,000 new cases will be seen in 2021. Unfortunately, that means that about 12,000 folks will pass from myeloma this year. But it’s still an amazing time because patients are living longer and longer. Marcella, you’re a wonderful example of what all the wonderful therapies have done in terms of outcomes for our patients. The prevalence is going to continue to increase because more people are going to stay alive for longer periods of time.
We also have to think about the usual presentation of patients that we see. I always say that the classic patient with myeloma is someone who’s 69 to 70 years old. There’s a higher rate in men. White men are typically the most common, but there’s an increased prevalence in African American individuals. But if you’re a medical boarded person, when a white man presents at about 70 years old with increasing back pain, that’s your classic case that’s going to be myeloma. We want to make sure we get these people diagnosed quickly, safely, and smartly so we can get them on therapy and protect them from what the disease is going to do to them.
Marcella, with that backdrop, can you walk us through your initial diagnosis? What was going on at the time? How we got here would be a good place to start.
Marcella Worrell: It started when I was at work with severe back pain. It started, and I thought I had moved something too heavy because I work for the Postal Service. I went to my doctor. They sent me to do therapy. I did that for a whole month. I did back therapy, and that wasn’t working. Then I had to have a CT scan. I did that, and they still didn’t see anything. They told me they saw a spot or a blob or something on my back, but that it was nothing to worry about. So I went back to doing therapy. That was on my second month. I was still in pain.
I went back to the doctor and told him, “I’m not used to this. I never had back pain before. What’s going on?” They did blood work on me, and after 2 whole weeks of not reading the blood work, I finally went to his assistant, and she said, “You’re having a kidney failure.” I thought, a kidney failure? That wasn’t right. They sent me to the hospital to check it out stat. They said my kidneys were failing. The doctor sent me to a kidney doctor, who in turn said, “Yes, your kidneys are failing. You need to be on dialysis.” I told her right away, “I’m not going on dialysis, because I never smoke, drink, or do anything like that. Why are my kidneys failing?” She said, “Marcella, if I knew, I could answer that for you.” I said, “We have to find out. There’s no way I’m going on dialysis.”
She was going to do a biopsy on my kidney, but first she told me to do a 24-hour urine test, which I did. The day before the biopsy, she told me, “No, you need to go to an oncology [doctor],” and I did. I went to Dr. [Daniel] Spitz in West Palm Beach, and he did a biopsy. He didn’t wait. He didn’t put me under or anything. He did it while I was still awake, which was another painful process, but we got through that. A day later, he told me, “You have multiple myeloma. I need you in the hospital right away.”
I went into the hospital for a week. He put me on cancer medication they gave me through a drip. My blood count went down and everything. They gave me a thing of blood. And lo and behold, two days later, my kidneys were going back to regular function. He explained to me that there was too much calcium in my blood and the kidneys couldn’t get it out of my system, which they’re supposed to. That’s why the kidneys were failing. That’s where I’ve been.
Kenneth H. Shain, M.D., Ph.D.: That’s how we started, right?
Marcella Worrell: Yes, that’s how we started.
Kenneth H. Shain, M.D., Ph.D.: For those listening, this story started in 2012, or maybe even maybe 2011, so it was almost a decade ago.
Marcella Worrell: Yes.
Kenneth H. Shain, M.D., Ph.D.: This is something that’s still getting better in terms of how frequently someone presents this way. But Marcella, you didn’t present in an atypical way. What does that mean? It means patients often go through these common things. “I have back pain. I have fatigue. I have other things going on. I have kidneys that aren’t working quite right.” Because myeloma is such a rare entity—only 35,000 will be diagnosed with it in the United States on an annual basis—it sometimes takes us time to get there because back pain is common.
You’ve got to put these things together, just as you did. You went through your primary care, they got some imaging done. Maybe it wasn’t so obvious at the time, and then they finally did some labs and said, “You have a little bit of anemia, and your kidneys aren’t working very well. See a nephrologist.” That takes a little more work and one more test to figure out what’s going on. Then all of a sudden, we have a constellation of things that says you have anemia, renal failure, and some lesions at your bones that are classic signs for myeloma. Now you probably have myeloma. Let’s make sure we look and find out what’s going on. A constellation of things got you there. Thankfully, more and more over the last decade since you’ve been diagnosed. That presentation, although it still happens, is a little less common because people get to myeloma a little faster.
We’ve been educating the community a lot more to not wait so long trying to figure things out. Let myeloma be one of the things you think about if someone comes in with back pain. But in your case, you were only in your early 50s when this happened.
Marcella Worrell: Yes.
Kenneth H. Shain, M.D., Ph.D.: Before, I said 70 is the average age. You aren’t anywhere near 70 when you’re 50-something years old. It isn’t high on the list, so it takes time for people to get there. But you got there, and you had classic issues with multiple myeloma. It’s a disease that, like most cancers, causes harm. It causes harm by affecting organs. Those organs are going to be your kidneys causing kidney failure. There’s going to be bone marrow failure because you’re filling up your bone marrow with disease and you can’t make enough red cells. You were anemic. Your calcium becomes really high because of a lot of bone turnover. That’s what you had as well. Then you had some lesions in some areas of your bones where bone decalcification happens and they become weak and can fracture.
That’s how a lot of people can present. In some ways, you’re classic in terms of your presentation. This is what happens with people with myeloma: You don’t figure it out right away. But you’re also an example of how we’ve hopefully done a much better job in the medical world of getting people from those symptoms to a diagnosis much more quickly so not as many people have to go through all those steps to get to us. It still happens, but we’ve begun to educate the community, our patients, our caregivers, and the public domain about thinking about these things. That’s what I would say based on your presentation and where we are.
Then you went through the work-up. You said you had a PET [positron emission tomography] scan, so you had head-to-toe imaging, and we had a bone marrow biopsy, which you explained very nicely and were so excited about being awake for. I always tell patients that I’ve done enough of them with people awake that I would only ever want to be asleep if I ever had one. I always ask to have patients under sedation when they get bone marrow biopsies because they aren’t always painless. They can be painless, but they’re not always that way. I know which way I would be if I were getting one. I’d be the one crying in the corner, so I want to make sure we think about that.
You also had specific laboratory tests done. We want to check for your blood counts to make sure bone marrow is functioning OK, which it wasn’t. We wanted to check your chemistry. We wanted to make sure your creatinine and calcium were OK; neither were. Thankfully, we got you diagnosed quickly enough. Dr. Spitz got you on therapy quickly enough. Your kidneys got better. We also wanted to get a survey to see what’s going on. The bone marrow biopsy we did tells us about disease burden, risk that might be going on inside your bones, and molecular characteristics of the disease itself.
Those are all the major things you want to get to figure out what’s going on. There are some other ancillary, though really important, tests to help us give you staging. You got a β-2 microglobulin, an albumin, and an LDH [lactate dehydrogenase]. Those are all things we did that you may not remember we did, but they’re important for how we do things.
Transcript edited for clarity.