Multiple Myeloma: Donna's Story

Donna Kidder 

Raleigh, North Carolina 
Multiple Myeloma  
Transplanted in 2012, CAR T-cell Therapy in 2020 and 2023  

Many thanks to Duke University and the American Society for Transplantation and Cellular Therapy for helping us share Donna’s story.  

Before diagnosis, what was your life in 2012? 

I was living in Raleigh and I was incredibly active. I was extremely health-conscious—drinking green smoothies, riding my bike, and running at least 10 miles a week. I had just returned from a wonderful trip to Washington, D.C., where I ran the Cherry Blossom 10-Miler. I loved to head out and explore. For company, I had three fantastic dogs: Jake, Dixie, and Beau.

I’d been divorced for a while but remained very close to my ex-husband. I was 59 when I was diagnosed, but I’d already been retired for 12 years. I retired at 47, when I quit my full-time job.

That’s a bold move to retire at 47. What led to that decision?

When I was a kid, I used to read Mother Earth News and articles about how to live off the grid. I had managed to pay off my mortgage early, and I realized that if I could afford to live on less, I could walk away from the corporate world. I decided time was more important than money.

Being free from full-time work was amazing. Retirement doesn’t mean you stop doing meaningful work; it just means you don’t get paid for it. I became the “nonni nanny” for my grandkids. And I volunteered. I took inner city kids on camping trips with the Sierra Club, I helped build Habitat homes (especially women' s builds), I fostered dogs and worked at homeless shelters and contributed to trail maintenance. I kept busy.  

You mentioned that you were divorced but remained close with your ex- husband. What was your support system like when you were first diagnosed?  

I like to joke that I don’t play well with others, which is why I’m single. Or, as I also like to say, relationships are a lot of work, and I’m retired! But my ex-husband, Dean, to whom I was married for 20 years, remains my best friend. He became my caregiver for 11 months in Arkansas during my tandem transplant. And my former mother-in-law, Margaret—who everyone called "Umma"—was wonderful. I used to take her all over New England. I took her to the Ben and Jerry’s factory and once we went to a ski lodge. I’m afraid of edges, but she wanted to do the chair lift. I was so scared I had my eyes closed, but her eyes were wide open. Looking down, she said, “I feel like I’m seeing God!” She lived to be 101. When I was sick, I sent her letters constantly so she could track what was happening.

How did you first discover that something was wrong?

I was seeing my gynecologist, whom I essentially used as a general practitioner. I asked her to run complete blood work and check my bone density because I had been taking Boniva. When the results came back, there was an abnormal protein in my blood. She sent me to a local hematologist.

I remember that first hematologist gave me this glib smile and asked why I was there. I looked right at him and said, "I think I might have Multiple Myeloma."

Unfortunately, you were right, and a diagnosis of Multiple Myeloma was confirmed. What did you do next?

My former boss had a neighbor with myeloma. They joined us for dinner with a full PowerPoint presentation to show me exactly where I needed to go. They told me the absolute best place in the world for this disease was the Myeloma Center for Research in Little Rock, Arkansas.

The entire center was dedicated to myeloma. I was incredibly fortunate because Blue Cross Blue Shield of North Carolina was stellar—they covered almost everything. Later, the Biden administration's cap on Medicare out-of-pocket prescription costs at $2,000 kept me from paying $10,000 a year for drugs.

Moving to Little Rock for treatment must have been a massive disruption. What was that experience like?

For transplant I was required to have a dedicated caregiver. I didn't have the money to hire someone full-time, so my friends were putting together a plan to rotate caregiving. They were making a schedule when my ex-husband, Dean, said he wanted to do it.

I went down by myself initially, and then Dean drove my car down, packed with everything I’d need to live. The program is unique in that it’s entirely outpatient. I went to the center every day, and later a nurse came to my apartment daily to do my blood draws.  

But even with this outpatient model, it was hard. Dean had to sleep on a sofa bed, I was in a bedroom without air conditioning, and I hated having to rely on someone else for every small thing. The hardest part of being sick, for me, was losing my independence.

The “tandem stem cell transplant” you received in Little Rock is unusual. Can you explain that protocol?  

It was an aggressive protocol called "Total Therapy 4." It consisted of two inductions, two transplants, and two consolidations. My first stem cell transplant was in October 2012, and the second was just six weeks later in November.  

I used to think it was totally unfair that I got cancer because I was so healthy. But during those 11 months of treatment, I realized that my baseline fitness was the only reason I survived it. At one point, I was so weak that I needed to sit on a tripod chair just to fry an egg. And yesterday, I did a one-arm, 20-pound shoulder press in a pike position! Your body can come back.  

The tandem transplant gave you years of wellness, but multiple myeloma is notorious for needing multiple rounds of treatment. When did your myeloma return and what treatment did you pursue then?

I was good until 2017, just a little short of five years. In that time, I bought a teardrop trailer, and I traveled. I ran a half-marathon! After I relapsed, I spent the next few years cycling through numerous different forms of chemotherapy.

Then, in 2020, I had my first CAR T cell therapy using the Abecma protocol, though I didn't achieve full remission with it. Luckily for me, this first round was a clinical trial. Typically, insurance won’t cover two separate CAR T treatments, but I was eligible. The second time, I received Carvykti. I still didn't hit a stringent complete remission initially, so my oncology team added an immunomodulatory drug called Selinexor to boost the efficacy of the CAR T cells.

And that worked! I achieved MRD-negative status (Minimal Residual Disease), meaning they did a bone marrow biopsy and couldn't find a single myeloma cell out of two million. I think the Selinexor was what finally did the trick.

When I was first diagnosed back in 2012, they were just starting early CAR T trials in Pennsylvania. I read everything I could get my hands on back then, and I remember thinking: One day, that technology is going to save my life. I just felt it in my bones.

What does undergoing CAR T therapy actually feel like compared to standard chemotherapy?

Oh my God, I love CAR T. I would take it over any other treatment a million times over. Before CAR T, standard chemo left me sick to my stomach three or four days out of every single week. I couldn't work out; I felt miserable.

With CAR T, they take your T-cells out, bioengineer them to target the cancer, grow them, and reintroduce them. When they first put the cells back in, you feel completely fine. I remember walking around the hospital during my first round saying, "I don't think this is working," because I felt so normal. Ultimately, I did have some of the flu-like symptoms CAR T-cell therapy can cause, but it was so much easier than chemo.  

How are you doing today, and what does maintaining your health look like?

I am healthy well past my typical expiration date. Often, patients can get about two and a half to three years of remission with CAR T, though for a lucky few, it never comes back. I’ve pulled the short stick so many times in life; I'm hoping that in this one thing, I got the long stick.

My immune system is pretty shot from the treatments, so I have to keep my distance from my 12-year-old, germ-

carrying granddaughter, Emory! But my son Mathew, his wife Amanda, and my three grandkids—Caed, Savannah, and Emory—live just five miles away from me here in Raleigh. We belong to the same swim club, and we spend our Sundays hanging out together.

When I was first diagnosed, I cried so much because I just wanted to live long enough to see my oldest grandson, Caed, graduate from high school. This year, the second oldest is graduating. I'm living like I don't even have cancer right now. I recently emailed my nurse practitioner, Melissa—who is an absolute angel and part of my core team alongside Dr. Christina Gasparetto—about some new in vivo CAR T research. I told her, "If the disease comes back, this is the one I want next." Melissa wrote back and said, "Donna, we’ve already cured you."

Looking back, what is the biggest lesson you've taken away from this twelve-year journey?

Cancer gave me the ability to pay exquisite attention. I remember driving home from the cancer center in North Carolina early on, and the trees were turning a vibrant, full green after a long winter. I looked at them and thought, I am not ready to leave this yet. I started paying attention to every single flower, every drop of water on an elephant ear plant.

And I learned to be an active participant in my own healing—not a passive recipient. Every day, I actively tell my body that it is an important and necessary body. I eat food that doesn't taste good simply because it is good for me. 

I don't know how long I have to live, but I don't fret about it. I am a test case of one without a control group, but it worked for me. Every single day, I wake up like I'm going to live forever.

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A leading center of clinical care, medical education, and biomedical research, Duke Cancer Institute is consistently ranked among the nation’s premier healthcare institutions. Patients directly benefit from Duke’s leadership in cancer research, thanks to a “bench to bedside” approach that focuses on making promising new therapies quickly available to those who need them most. Duke continues to earn national and global recognition for its innovations in blood and marrow transplantation.  

The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.