I’ve been in the world of broadcasting for almost five years now. During that time, I’ve been a sideline reporter for a semi-pro hockey team, a guest on a few reality T.V. shows, a production assistant and an associate producer for a reality show pilot that, unfortunately, didn’t go anywhere. But I’ve never dealt with anyone in the medical profession, besides the occasional visit to my primary care physician. The thought of compiling the knowledge of two doctors in order to spread awareness of a disease like multiple myeloma, was a little scary and I couldn’t help but feel the pressure.
Sure, I was confident in reaching out to them, but I couldn’t help but feel a little intimidated. You see, asking a hockey player if they are going to be “more aggressive on the forecheck” is a tad different than asking an oncologist/hematologist or an orthopedic surgeon about “osteolytic lesions.”
Luckily for me, oncologist/hematologist, Dr. Todd Zimmerman of the University of Chicago and orthopedic surgeon, Dr. Jan Szatkowski of Illinois Masonic and Lutheran General were both very pleasant and put me at ease…even if my office felt like an ice box as I interviewed them over the phone.
Perhaps it was a bit of my own nervousness, or the chill from the room, but after a brief introduction, I dove right into the interview.
The first question I asked Dr. Zimmerman was what prompted him to specialize in the treatment of myeloma to begin with. He didn’t hesitate as he described an experience he had during the first year of his fellowship where he met a young patient in their early 50’s.
“Twenty years ago, the only therapies there were promised a median survival of about three years…that wasn’t good enough, more had to be done.” It was because of his experience with that patient that caused him to switch his focus to myeloma.
Myeloma is linked to age. It’s very rare for people in their 30’s to develop myeloma. For someone in their 40’s, it’s unusual. It starts to show up in people who are in their 50’s and 60’s. The median age for patients to develop the disease is 68-70. It’s more common in men and African Americans. Dr. Zimmerman explained that there isn’t really a good understanding of the racial and gender disparities. “It’s thought to be related to various exposures in the environment but no one has a good handle on what those particular exposures are.”
From my own research into myeloma, I was unnerved by what I believed was the disease’s ability to remain undiagnosed for so long. Before my mother’s diagnosis, she complained of an incessant ache in her left arm. She said she bumped into a wall at her home one night and felt increasing sense of agony in the limb. She thought that she was getting osteoporosis. Severe joint pain is what eventually led to her hospitalization, where it was discovered that she had actually fractured her left arm. Not two weeks later, her left femur would break under her own weight. So I asked Dr. Zimmerman and Dr. Szatkowski about the presenting symptoms that they have seen in their practices.
Dr. Zimmerman stated that, “The common things are pain and fatigue. Pain is from the bone issues that occur…because the lesions within the bone can leave punched-out holes in the bone and they’re more prone to fracture. Especially in the back too, you can get compression fractures…you can get those with osteoporosis too, which is one of the confusing things as well. Fatigue also…that’s another common feature of the disease is significant anemia. So those two things in particular are things that often bring it to the attention of the physician or the patient. But oftentimes found in routine blood work. The patient may be completely asymptomatic. Sometimes some people have kidney damage too. The findings are relatively non-specific.” He paused for just a moment before explaining further, “Because you think about back pain. You think about what a general internist sees, they see hundreds of back pain patients every year and probably none of those will be myeloma or any sort of cancer. Maybe one of those will be a cancer…but rarely multiple myeloma. So it takes a very good primary care physician to tease things out. What is just muscular-skeletal, from being a little overweight to ‘you need to do more core work’ like all of us need to do. Versus something that truly requires significant attention.”
Though suffering from a terrible cold, Dr. Szatkowski took the time to talk to me and related to me that in his experience, more than 50 % of the time, pathological fracture or some type of bone pain, is the first presenting symptom in some of the patients that he sees.
Myeloma cells activate the bone destroying cells, called osteoclasts, and it creates holes inside the bones which are called “osteolytic lesions.” The biggest concern with those lesions, is when they present in weight-bearing bones like the femur, humorous and pelvis which can be prone to fracture. Physicians typically screen for the lesions by x-ray and those x-rays will then show that the bone is being destroyed in a particular area.
Dr. Szatkowski told me about the first time he treated a patient with multiple myeloma, “They presented with high pain that did not allow them to walk…at all. Unfortunately, they had a huge osteolytic lesion in their femur and their pelvis and we decided to place a metal rod in their femur to help them walk.” He explained further, “The other thing about osteolytic lesions is that not all of them can be fixed, especially those involving the spine or the pelvis. So sometimes they can only be treated symptomatically with radiation instead of surgery.”
I understood what Dr. Szatkowski was talking about. During my mother’s battle with myeloma, she was largely bound to a wheelchair, unable to stand upright for long periods of time without experiencing a lot of pain. It seemed like my mother had developed these “holes” everywhere. Her left arm, left leg, and left hip were all broken and required surgery. Plus, she had broken ribs and fractures in a couple vertebrae in her spine. Those issues couldn’t be addressed through surgical methods. It left me to I wonder if there were bones that were more prone to developing lesions so I asked both Dr. Zimmerman and Dr. Szatkowski.
Dr. Zimmerman didn’t hesitate to answer, “You typically don’t get it below the knees or the elbows. It’s unusual to see it in the hands or the feet. It usually occurs above the knees or elbows…so whether it’s the ribs, the spine or the skull or the pelvis, any of those things are more commonly affected.”
Dr. Szatkowski agreed, “He’s right, I mean you can have it sometimes within the tibia and so forth. I just saw a patient actually recently…but he’s right. It’s usually more in pelvis, the spine, the humorous or the femur…nobody knows why.”
I asked Dr. Szatkowski, in his experience as a surgeon, what may be some other concerns that myeloma patients should be aware of.
“The weakness of the bone. Also their other organ systems, such as the kidney is affected. They’re also at greater risk for complications during surgery. Multiple myeloma tends to…how can I say this…” he paused briefly before continuing, “…those patients can also be coagulopathic. Which means they can bleed very easily around their tumor. So that’s also another challenge during surgery.”
My mom was diagnosed pretty late in the game. Her treatment options were limited and her type of myeloma was very aggressive. It was only a few months after her initial diagnosis when her oncologist spoke with me and related that perhaps it would be in my mother’s best interest if we concentrated only on treating her pain.
I wondered if my mom had been diagnosed earlier, what sort of treatment options might have been available.
Dr. Zimmerman was very thorough in his answer, “Initial treatment options for patients with symptomatic myeloma is making the first decision whether or not they’re a transplant candidate or a non-transplant candidate. Or whether or not they should go down a more aggressive route and that depends on age, depends on other medical conditions they may have. Regardless, they start with initial chemotherapy to get things in remission. If they get a transplant done, then they continue to get on some treatment afterward to try to maintain the remission.
“For people who are not gonna go to transplant, typically they have some initial chemotherapy called ‘induction chemotherapy’ to induce remission. And then when they’re in remission, they go ahead and go on some sort of maintenance treatment typically to try to maintain their remission and keep it going for a longer period of time.”
I had read about stem cell transplant therapies for myeloma patients and I asked Dr. Zimmerman, an expert in the field, on how it works.
“The way it works is…any chemotherapy…there’s always a limit to what dose you can give because it destroys good cells and bad cells. There’s always what we call ‘the dose of limiting toxicity.’ If you go above that, it’s just too toxic. If we go higher in the dose, we’ll kill more myeloma cells. Some of chemotherapies what we call ‘the dose of limiting toxicity’ is the effect it has on the bone marrow. To go above that, it would destroy the bone marrow. Since the bone marrow makes all the blood cells, that’s obviously important. So what we can do is we can take some of those bone marrow cells out of the patient, freeze them away, have them come and get high doses of chemotherapy, to destroy as much of the myeloma as possible, but in the process it also destroys the bone marrow. After the chemotherapy is washed out of the system, those bone marrow cells are thawed and they’re given back like a blood transfusion. They go right back to the bone marrow cavity and they can divide again and repopulate the bone marrow.”
Transplants that use cells from someone else, for myeloma patients, those transplants tend to be very risky and aren’t done very often at all.
I read that myeloma was the second most common blood cancer in the U.S., but yet, it remained relatively unknown. That fact bothered me. I asked Dr. Zimmerman for his thoughts and it took him a moment before he responded.
“I don’t know…it may be because it gets confused with melanoma. You know, skin cancer. So a lot of times, even when I say I treat myeloma, they say, ‘Oh! That’s skin cancer.’ And I say, ‘No…no.’ and I think it’s confusing there. So people hear about it like, ‘so-and-so’ was diagnosed with myeloma, and they sort of file it away like, ‘Uncle Joe has skin cancer’ or something.
“Also it’s hard to say what it is. You think about breast cancer, you think about prostate cancer, colon cancer, and pancreatic cancer…we know what organ we’re talking about. Yeah, it came from the breast, it came from the colon. But when we talk about myeloma, it’s a cancer of the plasma cell. ‘Well, what’s a plasma cell?’ And you say it’s an immune cell, a cell within the bone marrow. And so I think it gets lost in the explanation because there’s not one organ where it comes from like many of the other cancers.”
I know from personal experience what he was talking about. I often had to explain my mother’s illness to family, to friends. It hit home very quickly that those like myself, who are either directly or indirectly affected by myeloma, should do what we can to raise awareness about this horrible blood cancer.
I asked both doctors for a final thought:
Dr. Zimmerman was hopeful in his answer, “They should know we’ve really made tremendous advances in the myeloma field. I think it’s important to establish yourself with someone who really focuses on multiple myeloma. And to understand that we’ve come a long way, but we still have a long way to go too. There really is a reason to be hopeful in this day and age with myeloma. Unfortunately, we still have too many patients who have a very aggressive disease. But we’re getting better at identifying those patients up front. So we can come up with better ways to treat patients with more aggressive myeloma and those with less aggressive myeloma.
“It’s not one disease too. It’s about five or six different diseases all lumped together and have very different behaviors. It’s important to keep trying to get a handle on it…even though we don’t have the best way to classify them yet, we need to understand its different diseases in different people.”
Dr. Szatkowski also gave me his thoughts, “I think multiple myeloma is a disease where an orthopedic surgeon can help decrease pain and improve mobility. But unfortunately there remains many challenges in treating multiple myeloma…it needs a multi-disciplinary team. Including the oncologist, orthopedic surgeon and even the radiation oncologist to help treat the patient to maximize their care.”
I felt good when I got off the phone with them. Both doctors gave me a lot of great information that I could share. I couldn’t help but think of my mother and everything she went through. I can only hope that in some way, I’m able to help someone else who might be experiencing what I experienced and in doing so, honor my mom’s memory.