Introduction

Theresa: I was born in New York City, grew up primarily in Connecticut, and currently live in San Francisco. I went to college in Boston, moved to San Francisco a month after graduating, and I’ve been here ever since.

I had a great career in human resources. I loved that because I love helping and training people. That helped me a lot in my myeloma journey. I’ve been able to talk to other people who have myeloma, help them, and provide information. It’s always good to extend a helping hand to other people. People have done that to me as well, so I want to give back.

I have three brothers and two sisters. It was great growing up with great siblings. We all get along, which is wonderful. I love my brothers and sisters.

I used to be a lot more active. I love to swim. I love to go to the beach. I wish it was a little bit warmer, but it’s close.

I’m full of energy, loving, funny, sometimes smart, and strong, which is interesting. It’s sometimes hard to take that compliment when you go through cancer. People say, “Oh, you’re so strong. I admire you.” Meanwhile, inside, you’re freaking out.

I’ve had people say that to me a lot, so I guess it’s true. I think it comes from being from a long line of strong women in my family. I have good role models. I don’t know any other way to be.

Scans

Theresa: She sent me to an orthopedic surgeon for a spinal X-ray. He’s the one who suggested that I get an MRI, which revealed lytic lesions. Myeloma tends to create lytic lesions. It’s a cancer of the bone marrow, so it eats away at the insides of your bones.

Between mid-February to the end of June is how long it took to get a real diagnosis. In the meantime, my pain kept getting worse and worse. I was using a cane and on pain relievers. It was frustrating to not know what was going on.

Tom: It was unpleasant and worrisome. We didn’t know what it was. For a period of about 3 to 4 months, she went from working out once a week to being unable to walk on level ground without a cane.

Reaction to the Diagnosis

Theresa: My myeloma story started when there were a lot of emerging therapies for myeloma. I had always been pretty much healthy and didn’t have anything wrong with me specifically. I led a fairly healthy lifestyle while enjoying life, but I was shocked to get this diagnosis.

Tom: It happened pretty fast. I knew what it meant for her and it was going to be a big part of her life from here on out, which meant it was also going to be a big part of my life from here on out.

Theresa: I left his office better informed. It took me a while to absorb everything. I didn’t completely freak out. I was still in a bit of a denial.

RVd Chemotherapy

Theresa: The oncologist had a very specific treatment plan. He said, “The initial treatment you get is RVd (lenalidomide, bortezomib, and dexamethasone). This is the standard of care. This is the best that we can do for you.” At that time, there wasn’t a good alternative.

Tom and I talked about it. One thing that I appreciate he always says is, “It’s your body. You have to make the ultimate decision.” Over the years, we’ve talked about different treatment plans, what they’re going to involve, timing, and everything. But in the beginning, the timing was as soon as possible.

CAR T-cell Therapy Clinical Trial

Theresa: [My disease] became refractory towards my line of treatment. It stopped working. They had a clinical trial available and he thought I was a good candidate. I asked him why he thought that and he said, “You’re in otherwise pretty good shape. You’re doing well. I know you pay attention.” I ask questions and follow orders, so he thought I would be a very good candidate for the CAR T-cell therapy trial.

I was enrolled in the bb2121 trial, which led to the very first FDA-approved CAR T-cell treatment [in myeloma]. I know my number is in there somewhere about my survival with that treatment, so that’s fun.

Clinical trials are a lot. You have to be dedicated. I remember talking to somebody who said, “Why are you doing this trial?” I said, “I want to help other people. Besides, I think it’s going to help me. It sounds really good.” You’ve got to do what you’ve got to do.

CAR T-cell Therapy Process

Theresa: First, they take your cells out. They had to send them to New Jersey and then back to California. Before that, there were three days of chemo. To get the CAR T cells, you have to go to the hospital. It’s like a short infusion.

I got them on a Monday and then I had what we like to call Loopy Tuesday. I did have cytokine release syndrome. I don’t remember most of that day at all. I said some strange things when they asked me questions.

After that, they hooked me up. They did so many things to make sure I was okay. I felt okay. They did tests. Doctors came every five minutes. They wouldn’t leave me alone. Everything was fine, except for that 12- to 18-hour stretch. It was otherwise being bored in the hospital.

Luckily, within 30 days, I had a complete response. There was no myeloma detected in my system. That lasted for about 18 months, which is better than the average of about a year or 13 months. I beat the odds, but it came back.

Adjusting to New Treatments

Theresa: Know that it could get better. If it’s your first treatment, give your body time. Talk to the doctors and the nurses. Ask them what to expect and what’s normal. Don’t be afraid to ask what’s going on. “What can I expect from this? What can I do to change this? Can I change the dosage? Can I change the timing?”

With dexamethasone, sometimes, it depends on the dosing schedule because it can keep you awake. Work with your body to know the best time to take it and if you can make adjustments. Ask the doctor, “What else can I do?”

This is one mistake that I made in the beginning. I thought if I said something to my doctor, they would address it, but they don’t always do that. If you say something, they’ll listen and write it down, so you have to specifically ask them.

I’ve been on this regimen since September 2021. Again, beating those odds.

One thing I know is that I’m very lucky to have responded to a lot of different treatments. Most of my treatments have been pretty good. Maybe a quarter to a third of them didn’t work, but others have, so I’ve been very lucky to have that percentage work for me.

Words of Advice

Tom: When we got the diagnosis, I said, “Okay, we’re on our way. We got a name. We can pin this sucker down.” We’re getting closer to 10. Median survival rate was 7 ½ years and she’s beaten the hell out of that.

Theresa: I have hope. I’ll still be around. I still have stuff to do. I’m not ready to go yet. It gives me hope that there are more treatment options out there. There are so many people working at different levels to help folks with myeloma be better-taken care of. They’re looking for a cure, so that’s very exciting. They’re getting closer than they have ever been.

It’s about survival, doing the right things, getting support, and being tough.