Living Longer with Multiple Myeloma: The Emotional Issues
Jenny Ahlstrom, who was diagnosed with multiple myeloma in 2010 at the age of 43, has outlived the life expectancy for her particularly aggressive form of multiple myeloma. She has tamped down her anxiety and thrown herself into the fight against multiple myeloma in a way that will help other patients as well as herself.
With her husband, Paul, the Utah-based mother of six has used her background launching start-up companies to create a number of projects aimed at fighting multiple myeloma on several fronts, including a radio program; a website called Myeloma Crowd; and a research initiative to fund studies on high-risk myeloma.
Jenny and Paul’s latest effort, introduced in the summer of 2018, is a digital platform called HealthTree that allows patients to share data about their multiple myeloma treatment—what worked, what didn’t—to better analyze the medical options, connect with clinical trials, and discuss possibilities with their doctors in a more informed and assertive way.
“I would say this advocacy work is my therapy,” says Jenny. “I don’t go to counseling because this work makes me happy. I feel optimistic. But I never feel settled or like I can relax now and just enjoy my life with my kids.”
Here Jenny talks to HealthCentral about battling her disease with data, loving her life as an advocate, and facing an uncertain future.
HealthCentral: When you were diagnosed with multiple myeloma, did your doctor discuss your life expectancy?
Jenny Ahlstrom: The oncologist who diagnosed me never told me anything. But online, they say life expectancy used to be two to four years and now it’s four to six years, so isn’t that great.
But you know, it’s alarming. It’s completely alarming.
I have a particular translocation (a genetic feature) in my myeloma cells, the t(14;20) translocation. When my husband and I started doing research about my type of myeloma, we found out the life expectancy of the average patient is 22.4 months.
HC: How did you feel when you saw that number?
Jenny: Well, I was 43 and my husband and I had six kids all under the age of 15. So of course it was sad.
But I have to preface anything I say by talking about my husband’s brother David. Five years prior he had been diagnosed with AML, acute myeloid leukemia. He was 33 and had six kids under the age of 10. He lived for a year. It was such a traumatic experience for our family.
My husband was with David when he got his diagnosis. The doctor told David, you can get chemo or you can do the stem cell transplant, so which one do you want to do? And David was like, well, I don’t know, which one is going to help me live longer? So he tried the chemo first and by the time he went to transplant it was too late.
So my husband’s sitting in the same hospital with me when I get my diagnosis, and the doctor’s saying the exact same thing to me about treatment. And that completely changed the way we responded. We decided we’re going to transplant immediately. I’m fit, I’m young, we’re going to hit it as hard as we can.
HC: So that motivated you to find a specialist and go for more aggressive treatment from the very beginning?
Jenny: Exactly. I ended up seeing a doctor up at Huntsman [Cancer Institute in Salt Lake City] who had data showing he could get 30 to 50 percent of multiple myeloma patients out eight to 10 years. So he had more optimistic data and we said OK, we’re gonna do that protocol. I ended up doing tandem transplants [two stem-cell transplants done six to 12 months apart].
My number one piece of advice for anyone with a multiple myeloma diagnosis is to get a specialist on your team. There was a University of North Carolina study that showed that multiple myeloma patients seen by a specialist within the first year of diagnosis lived longer than patients who were seen in the general community settings.
So why is that? General oncologists are using protocols that are probably several years old; they are not going to the multiple myeloma medical conferences because they’re also treating breast cancer, lung cancer, kidney cancer, other types of cancer. I don’t know how they do it.
HC: I imagine a lot of people would probably react very differently to hearing a life expectancy of 22.4 months. Rather than springing into action like you did, they might just curl up into a ball.
Jenny: That is what a lot of people do. And we knew that doesn’t end well.
I did the tandem transplants and had two years of maintenance therapy. And then once I felt a little more normal I thought, OK, we have to do something to help other patients make their treatment decisions. We have to advocate.
When I was diagnosed I wanted to look at all the data about all the younger patients who had my translocation. What did they do for treatment and what was the outcome? Doctors are awesome and wonderful but I also wanted to make an educated decision based on data. There are umpteen treatment combinations you can use in myeloma and who knows which is the best one? The answer is no one really knows because they’re running one-off clinical trials and not doing comparative analysis. That data doesn’t exist. So that’s why we built HealthTree.
HC: You’ve been in remission for a long time and surpassed your initial life expectancy by years. How are you feeling about that?
Jenny: I still feel like I’m playing beat the clock. Because multiple myeloma is a terminal cancer. I don’t know how long I have. I still have young kids at home, I still have a big family that I want to raise. If I’m going to go down, I want to go down swinging, saying that I’ve done everything I could think of to do to save my life and other people’s lives.
When I was diagnosed in 2010, nobody was saying the word “cure” — nobody. If you said the word “cure” as a myeloma doctor you were made fun of. Now I’m hearing, “We could potentially be curing a certain percentage of patients. We don’t know who they are, what treatment they got or why they were cured but they’re now living 20, 20-plus years, so is that a cure?” You’re really starting to hear it in the general research community, at hematology conferences. All the immunotherapies are giving people a lot more hope.
So yeah, there’s lots of hope. But I still have this cancer.
Every single time I get labs, I still get nervous. I have a bone marrow biopsy on Friday and I’m still nervous. I don’t know where my numbers are going to be. Will I need to start treatment? I’ve been in this great remission for a really long time but I’m never completely worry-free.
My goal isn’t to live another five years. My goal is a cure.
Interview has been condensed and edited.
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