Published on April 21, 2021
Sharing My CLL Story
Sometimes the first treatment is all you need, and for many patients with CLL, their first treatment experience is during a clinical trial. Hear CLL patient Dorothy Jaasma and her husband and care partner, Ed, share the story of how a routine mammogram led to a very frightening diagnosis, several years of watch and wait, and a referral from a local oncologist to join a clinical trial at an academic center.
Support for this series has been provided by AstraZeneca Oncology. Patient Power maintains complete editorial control and is solely responsible for program content.
Transcript | My CLL Story: My First Treatment Was a Clinical Trial
Dorothy Jaasma: Hello. My name is Dorothy Jaasma and this is my CLL story.
When Were You Diagnosed With CLL?
In December of 2010, I went in for my routine mammogram and it was discovered that I had enlarged lymph nodes. I was asked to visit an oncologist and he took further tests, CT and PET scans, before the other tests and suggested that I probably had CLL or SLL. He further suggested that perhaps I would like to get a second opinion.
Even though my oncologist was on the top of everything, he did all the required tests, the PET scan and the FISH test, he suggested that I get a second opinion at a hospital that focused on CLL. And I would suggest that, because it just gives you a little bit more confidence in what your doctor has suggested or diagnosed.
Since my husband and I were planning to go to Texas to work on hurricane recovery, we made an appointment at MD Anderson, which was one of the three hospitals that he had suggested. I met with a doctor who confirmed the diagnosis after similar tests and a bone marrow test, and her recommendation was that I watch and wait. At the time, I wanted to know what I should tell people and she said, "Tell them you're going to live a long time."
Dorothy was on “watch and wait” for three and a half years. In June 2015, she reported fluid around her lungs and trouble breathing.
Dorothy Jaasma: My doctor in New Jersey had wanted me to begin therapy and he wanted me to get on ibrutinib (Imbruvica), but I was not eligible because I had not had previous treatment.
Ed Jaasma: I would hesitate to call myself a caregiver. I view my responsibility as to support my wife. She's very self-sufficient, so in a way, I'd say she didn't need a lot of support because we pretty much approach things the same way, doing what we have to do. And also, I did a lot of research, in terms of trying to find out what the options were and what people's experience was with the disease.
How Did You Transition from Watch and Wait to a Clinical Trial?
Dorothy Jaasma: My husband decided that we should look into clinical trials, and therefore we wrote to MD Anderson to see if they had any clinical trials.
As Dorothy and Ed made arrangements to relocate to Houston, her symptoms worsened. While admitted in the hospital cardiac leukemia wing, Dorothy was admitted into a clinical trial and began treatment.
Ed Jaasma: What made us comfortable about this particular clinical trial was that this was a second-generation BTK inhibitor, and the experience with most people had been very good with the first-generation, and we were hopeful that this would be at least that good.
Dorothy Jaasma: I began my regimen taking acalabrutinib (Calquence) in the hospital at MD Anderson on December 15, 2014, and I have continued taking them since then. And my MRD, I am considered in remission, but I still have MRD, but it's down to 0.15%.
Ed Jaasma: A month after the clinical trial and then after she had been in the hospital for the second time, the improvement was very rapid. And within a few months we were able to virtually resume our normal life, and her energy returned. And in general, she's had lots of energy.
Dorothy’s latest MRD test in December 2020 continued the good news. She remains in remission.
What Advice Would You Give to Fellow Patients?
Dorothy Jaasma: We would seriously suggest that you try a clinical trial, because you have the doctors follow you and we have had nothing but positive results. I've had no side effects. I’ve been able to travel around the world and we have bicycled every single day in the last year.
Ed Jaasma: Many of the trials that are now available are combinations of drugs that have proven to be effective. And it appears to us that there's a good chance, and there's real promise that with some of these combinations, the outcome may very well even be better than what has been experienced with the individual drugs.
We've been many places in the world, probably, with cruises and land tours, to about 70 countries. It would be difficult to say where the most interesting one was.
Dorothy Jaasma: Probably Antarctica.
Ed Jaasma: I guess we would kind of both say Antarctica was one of the best.
In 2021, Dorothy and Ed’s 16-year-old granddaughter, Juliana, was the co-leader of a student campaign to raise money and awareness of the Leukemia and Lymphoma Society and to cure blood cancers. They raise $111,012 in 7 weeks.