IMF Communications:
Hello, everyone. You're listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast brings messages of resilience and hope to members of the myeloma community and beyond. Today I am talking with Donna Kidder, who is living with multiple myeloma. Welcome, Donna. Thank you for taking time out of your schedule to talk with me today.
Donna Kidder:
It's my pleasure. And I like the way you phrased that, living with multiple myeloma.
IMF Communications:
And can you tell me a little bit more as to why you like that?
Donna Kidder:
Because some people say they're suffering from it or dealing with it, and I'd like to think of myself as living fully with multiple myeloma.
IMF Communications:
That's good to know. I think that's important for listeners to know as well, especially for those who are newly diagnosed. Speaking of diagnosis, can you tell me what it was like when you were diagnosed with myeloma? Had you had ever heard of the disease before?
Donna Kidder:
I had never heard of it, and I think I felt impervious to cancer because I was running marathons, cycling centuries, and drinking green smoothies for breakfast. So it was quite a shock for me to find out I had multiple myeloma, but fortunately I found out early, not after my bones had degenerated. I had been dealing with osteoporosis and I had been getting a drug to deal with osteoporosis, and it had been a year. So I asked my doctor to do a bone density test to make sure it was working, and they discovered that I'd lost far more bone density than was reasonable with osteoporosis. In addition, my blood work, my annual blood work showed high protein in my blood. The combination of those two things alone alerted them that I probably had multiple myeloma and I actually was able to self-diagnose based on test results before I saw an oncologist.
IMF Communications:
And so you were diagnosed through lab reports and through your own self-advocacy of asking further and getting the bone density scan. So when you were diagnosed, it sounds like it was smoldering at the time or was it?
Donna Kidder:
No, it was full-blown multiple myeloma. I have a hundred holes in my skull.
IMF Communications:
Oh, my goodness.
Donna Kidder:
Yeah, that's why I tell people I can't remember things, but I also had some bone degeneration in my pelvic area, but nothing, I had no structural damage, so it was early enough to prevent structural damage. My spine is still fine, but I did have some bone damage, and so it was definitely not smoldering. It was full-blown.
IMF Communications:
And I'm sure that was very surprising. Like you said, with leading an active lifestyle and being very health conscious to be diagnosed at that time with that. Have you been able to continue working and what does your life look like now?
Donna Kidder:
Well, when I was diagnosed, I was already retired. I was lucky to be able to retire early. At the time I was cycling, as I said, running, gardening and taking care of my grandkids. Once my treatment was completed, I actually went to Little Rock, Arkansas for 11 months for my first treatment.
IMF Communications:
With Dr. Barlogie?
Donna Kidder:
Yes, Dr. Barlogie. Once I returned, I resumed every activity, just not quite as fast, quite as long, but I resumed everything, including watching my grandkids. I was their nanny for many years.
IMF Communications:
And what kind of treatments did you undergo?
Donna Kidder:
I have undergone, I think just about everything except bispecific. I had tandem stem cell transplants, which is part of Dr. Barlogie's Total Therapy 4, I had that in Little Rock. That allowed me four years of treatment-free living. When my cancer came back again, I was taking Kyprolis with dexamethasone, and I think that was it. And that actually, again, took me to complete remission, and I chose to stop subsequent treatment for a while so I could see Niagara Falls and do some other fun things.
But after a year, my cancer came back. That's when I tried Darzalex, which did not work for me. It works for a lot of people, but it didn't work for me. And in 2020, I had my first CAR T, so I had a BCMA CAR T when it was in trial mode. That never took me to complete remission. And so after that CAR T, that's when I started on Kyprolis and selinexor, which I was on for three years until just recently. Then back in December of 2023, I had a second CAR T, which most people don't have, this time Carvykti, and I am very happy to say that I am in stringent complete remission now.
IMF Communications:
Oh, that's excellent.
Donna Kidder:
They tested 2,500,000 cells and not a single one had myeloma. And that's from that second CAR T.
IMF Communications:
That's excellent. That's excellent.
Donna Kidder:
And this is very unusual, but I am actually using selinexor as a maintenance drug, which it's unique. It's kind of a new thing. Let's see if this works. But it makes sense because it makes your T cells, which have been modified to be effective against myeloma, selinexor makes the T-cell more effective.
IMF Communications:
So you're taking Xpovio® (selinexor). Do you take it once or twice a week, or how?
Donna Kidder:
Now, I'm taking it once every two weeks. When I was taking it for therapy, I was taking it once a week.
IMF Communications:
And as far as side effects, are there any that you have to work toward preventing or managing with selinexor?
Donna Kidder:
Well, when I was taking it in a higher dose along with Kyprolis for three years, I had horrible nausea until I heard about a drug called Emend E-M-E-N-D. It's usually given for people who have had stem cell transplants to help them with nausea. And it worked so well for me that my nausea was very tolerable.
Now that I'm taking a lower dose, I still get nausea and it's more tolerable because it's a lower dose. And I have a few tricks that I thought I would mention to people for whatever kind of nausea they might have. I think it's important to keep eating, even though you don't want to, because if your stomach gets empty, you're going to have stomach acid. So sometimes the first thing to do before you run for anti-nausea medicine is to take an antacid because sometimes the nausea is caused by stomach acid. But of course, I'm on Zofran every time I take selinexor, which as I said, we recently switched to every other week.
IMF Communications:
And aside from treatment, you already mentioned how you were diagnosed and how you self-advocate as a patient. What advice would you give to other patients who might be a little reluctant to ask questions or find ways to deal with some of these side effects? How would you recommend that they advocate for themselves?
Donna Kidder:
Well, when I am contacted by people who have just recently determined that they have multiple myeloma, I tell them a couple of things. First of all, I tell them to find an expert in multiple myeloma. I think that's extremely important because so much research has been done and the game is always changing. You want to get the most recent treatments and the best possible treatment plan.
The other thing I tell myeloma patients is that every myeloma cancer is different, every patient is different and every treatment is different. So what works for me might not work for someone else and vice versa. But for that reason, it's important for them to do some research to study what's out there, what's possible, and figure out what they think would fit best for them in terms of where they are, what their health is, how their liver is doing, all kinds of things. So there's so much information out there to help guide people through that process.
IMF Communications:
And on another topic, I know you mentioned you took some time to spend with your grandkids. Do you have anything in mind that you'll be doing to kind of get your mind off of myeloma?
Donna Kidder:
Well, you know what's funny, every time I am in stringent complete remission, I kind of forget that I have multiple myeloma. I have it. I don't look like I have it. I'm still walk, running very slowly, but I'm still doing it. And I just live my life as fully as I can because worrying about the future is actually unhealthy, and if you make every day as good as possible, then your life is as good as possible. It's all about living in the moment and living fully and doing the things you love and when you can making a difference.
IMF Communications:
I felt my shoulders sink down into a state of relaxation when you're saying that, because I heard someone once say that, "Worry is the space between now and then."
Donna Kidder:
These are the things I like to tell people when I hear that they've got multiple myeloma, and I do hope that people reach out if they need help. I found out about Emend, that drug that helped me with nausea from another myeloma patient in Nova Scotia, who somebody put me in contact with it. It helps to talk to people who have been dealing with it. And I didn't mention this. I've been dealing with it for 12 and a half years, and I'm doing really well right now. So I do like to think that I offer hope to people who are newly diagnosed.
IMF Communications:
Thank you. I agree. You definitely do. It's been wonderful talking to you today, Donna. Thanks for sharing your story with us.
Donna Kidder:
You're welcome.
IMF Communications:
You've been listening to A Day In The Life Podcast, brought to you by the International Myeloma Foundation. To learn more about the IMF and myeloma, visit us at myeloma.org.
