Andrew Gordon was first diagnosed with multiple myeloma in 2013, when treatment options for the disease were limited. Connie Carlson received her diagnosis about five years ago.
Until 2024, so-called "triplet" drug therapy treatments, such as the VRd drug regimen – consisting of bortezomib (Velcade), lenalidomide (Revlimid), and dexamethasone – were considered the standard of care for those newly diagnosed with myeloma. These three medicines target myeloma individually but are even more effective when used together.
Both Gordon and Carlson received VRd as their initial treatment, but the similarities in their experiences with myeloma end there. The course of the disease is different for everyone diagnosed with multiple myeloma.
A Difficult Diagnosis
"I was feeling a bit tired, dragged out," says Carlson, 82, who lives in Washington state. She told her doctor, "I'm feeling low. Maybe I need some iron, or something like that." Carlson's doctor ran some blood tests. "I remember right where I was standing and what was happening when she called, and in a very lovely, gentle voice said, 'Well, I'm really sorry; you have multiple myeloma.' "
As unfortunate as Carlson's diagnosis was, she is one of the rare people whose myeloma is discovered so directly. Gordon, 73, a resident of Harrisburg, Pennsylvania, had a more typical path to diagnosis.
"In my case, I had a couple of issues that turned out to be precursors or warnings, but I didn't know that until I got serious pain in one of my ribs," he says. "I thought I strained a muscle, so I went through weeks and weeks – months, actually – of going to doctors, going to the chiropractor."
Eventually, one of these doctors sent Gordon to receive an X-ray. He had a fractured rib. "I didn't do anything to fracture a rib. I didn't even cough hard," Gordon remembers. He did some googling. "Everything I came up with was pretty horrible," he says. "So I went to my family doctor and said, 'I have this rib fracture, and I need you to run bloodwork.' "
It took a bit of arm-twisting, Gordon recalls, but his doctor finally agreed. "He called me that night and said, 'You need to go to the emergency room. You need a blood transfusion because you are so anemic. I'm not sure how you're walking around.' "
However you receive it, a multiple myeloma diagnosis can stun. "I felt as if some huge force had just smacked me in the back," Carlson says. She describes the feeling of loneliness it prompted. One minute, she says, "I was up on a platform with the rest of humanity. We're going about our business – kind of getting on the subway of life – and then I was on the tracks. I was 20 feet below and the train was coming."
Her diagnosis left her with a "sense of radical separation from all the rest of humanity," Carlson says, "And my family and friends are up there on the platform, they're looking down, very upset, but it is really lonely and very terrifying – or at least it was for me."
Coping With Multiple Myeloma and Its Treatment
Carlson's curiosity and sense of humor helped her cope during her weeks-long wait for her treatment to begin. She "read everything I could get my hands on" about her disease, she says. Her doctors at Seattle's Fred Hutch Cancer Center were talking about cancer antibodies and antigens, and "I was trying to boil it down," she explains.
Her myeloma treatment happened during the height of the COVID-19 pandemic when "overnight" deliveries were often a week late. She remembers anxiously waiting for her monthly prescription of Revlimid, which she had to be at home to receive. "It's like if the mail is late by one day to get the pills, the sky will fall and you will die," she now says. "I had a lot of anxiety."
Adding to the stress, Carlson says, were the "burdensome regulations for both doctors and patients." "You need to speak to a pharmacist before they will send it," she explains, "full of warnings that it can give your strokes or blood clots, among other miseries." Revlimid required a new prescription from her oncologist every month because it carries a "Boxed Warning," the strictest warning the FDA mandates for drugs with serious potential side effects.
Revlimid is given on a 28-day cycle, taken orally for 21 days, and then seven days without it.
For the already energetic Carlson, the dexamethasone, a steroid, gave an extra jolt. "You wanted to move pianos and write late-night letters," she says, "but really the side effects at first were mild. It was more the anxiety and the sort of a terror to get going and see what would work." As time went on, she says the side effects got worse.
A Lengthy, Hoped-For Remission, Then a Return
At the time Gordon was diagnosed in 2013, VRd was one of the main multiple myeloma treatments. "The idea was to do the VRd, try to get yourself into remission if possible – or get as close as you could – do a stem cell transplant, and then do maintenance chemotherapy after that."
He says he went into remission within a couple of months. "But I still went through with the stem cell transplant and then did two years of maintenance therapy with one drug, Revlimid." He had the stem cell transplant in 2014, stopped the Revlimid treatment in 2016, and had more than seven years of remission without any issues.
"Then, in December 2023, I started having pain in the backs of my legs, and it just got worse and worse," Gordon says. He went to a neurosurgeon who'd scheduled an MRI, but he never made it. On December 16, 2023, in acute pain and with his wife away from home, he drove himself to the emergency room.
"They admitted me to get my pain under control, but I immediately had testing, and they discovered that I had myeloma." The myeloma had moved to Gordon's central nervous system (CNS).
"Central nervous system myeloma is incredibly rare. About 1% of myeloma patients have it," Gordon says. Doctors are still uncertain how to treat this type of myeloma effectively. Gordon's doctors started him on a four-drug regimen of systemic chemotherapy. "Systemic" refers to the way chemotherapy travels through the bloodstream to target the entire body. The four-drug treatment was: daratumumab (Darzalex), carfilzomib (Kyprolis), pomalidomide (Pomalyst) and dexamethasone. They implanted an Ommaya reservoir under his scalp. This dome-shaped device has a catheter that not only allows doctors to access and examine fluid in his brain and spinal cord, but to deliver chemotherapy as well.
Gordon had the chemotherapy, along with radiation treatments for seven months. This course of treatment was successful, he says, and the myeloma was no longer detectable. "But no one thought I could rely on that. The idea always was, because this CNS myeloma is so high-risk, that I would do what is called CAR T therapy."
Chimeric antigen receptor (CAR) T-cell therapy is a type of cancer immunotherapy in which your T cells are removed, genetically engineered with a gene that attacks cancer cells, and then placed back into your body. Gordon had the CAR T-cell therapy in August 2024.
How They're Doing
Carlson, who's currently at a low measurable level of her disease, has had no further myeloma treatment beyond her initial VRd therapy. Gordon spent six weeks at the University of Pennsylvania Medical Center for the CAR T-cell procedure. "It definitely took a lot out of me, all that treatment for all those months and the CAR T as well," she says. "But so far, knock on wood, there's no myeloma detectable. In fact, I just had a round of testing in the past couple of weeks."
Except for the periodic testing they must have to keep watch over their disease, both Carlson and Gordon say their lives are back on track. Carlson, a business owner, continues to enjoy her work as well as her family. "I'm doing the best work in my life right now," she says. "It means a lot to me."
Gordon, a lawyer, says he's "95% retired" but has a job at a firm that allows time for his extracurricular activities. "I ride my bike every day. I go to the gym every day." At the time of his interview, he planned to travel to Death Valley, California, for a fundraising ride for the Multiple Myeloma Research Foundation (MMRF). He also works with other myeloma patients through MMRF's mentor program and tries to raise awareness about the disease.
Both have a bit of advice for fellow myeloma patients as well as their families and friends:
Be honest with your care team about symptoms and issues.
Carlson says she would tell hers she was feeling "fine," even when she should have mentioned something. "I was kind of a strict interpreter of the questions," she says. She didn't think there was anything special about the tingling and burning she was feeling – the beginning of neuropathy – so it got much worse before she mentioned it. Her doctors took her off the drug that was causing it right away. "Don't try to be brave," she now advises. "I think I just wanted to get better so badly that I just [blew past] the symptoms."
If you're struggling, ask your doctors if they can adjust your medications.
At first, Carlson's doctors were, in her words, "trying lots of dexamethasone" to treat her myeloma. "It turns out now that we are learning more that you don't need as much, so I wish I had been privy to that information," she says. But she talked to her doctor, who allowed her to take less. If you need to go back to the higher dose, "they can always dial it back up," she adds.
Don't be afraid to ask for help.
Consult online resources, but also reach out to people who've been through what you're going through. "Being a mentor, I'll connect with someone, and they'll say, 'Oh, I don't want to take your time. You're giving so much time,' " Gordon says. "And what I tell them is you have to understand that this is important to me, too. It's not just one-sided. I get something out of it myself."
You can find more information about myeloma from these organizations:
- Multiple Myeloma Research Foundation
- American Cancer Society
- Blood Cancer United
- International Myeloma Foundation
Tackle cancer on your own terms.
Because of his own difficulties in getting a diagnosis, Gordon works to raise awareness about myeloma. "The average myeloma patient sees their primary care physician three to five times before they are diagnosed," he says. "That is something that we need to try and deal with. I know MMRF is doing a lot to raise awareness. I try to do my part, too."
Carlson says she wasn't a fan of the widely held notion of "fighting" her cancer. "Why do we cancer people have to fight our disease? Nobody tells a stroke patient, 'fight that stroke and win over it!' Ditto to fighting Parkinson's, MS, or anything else," she says. "Besides, I'm a sore loser. If I die from it, I don't want to 'lose my battle' to it."
She told herself, "No, I can't fight this thing. It's not like that. But I don't mind if other people want to fight. I mean, if that metaphor or that conceptualizing works for them, just go for it." For her, humor did the trick.
Lessons Learned Along the Way
When you love someone who has cancer, "we all go through the ordeal – it's an ordeal together," Carlson says. In any case, cancer gives patients as well as their family and friends the gift of clarity, she says. "You just love people more and they love you. They show their love for you. They've always loved you, but it's more intense."
Gordon now spends a lot of time talking about his experiences with myeloma. He's a kind of mini-celebrity in the myeloma community. "One of the things I like to say in a half-joking way is if it wasn't for the fact that I have this incurable disease, this might be one of the best things that's ever happened to me because I get to help other people," he says. "It has made me a better person. I'm a better person now than I was before I was diagnosed. There's no question."
