Anita Lawson was paying the doctor a visit for her annual checkup in 2003 when she was told something that surprised her: she had anemia. She had some issues with bleeding in the past so anemia had been a problem before, but at that juncture she had been getting in shape for a class reunion and practically felt healthier than ever. The blood work also revealed that her IgM levels were abnormally high, which is a possible warning sign of Waldenstrom’s macroglobulinemia.
“I’m sorry to have to hit you with all this.”
“Hit me with all of what??? I don’t know what you’re talking about.”
It’s never a good sign when your doctor is apologizing and you don’t know why. A CT scan showed that Anita also had enlarged lymph nodes. She also underwent a bone marrow biopsy, but her doctor said she that she was a “dry tap:” the lymphoma had affected her bone marrow to the extent that there was no fluid that could be drawn. In just over a month (remarkably fast for a rare disease patient), Anita had been diagnosed with WM. In that month, Anita’s health had already declined significantly. She had had multiple colds as well as infections in her eye and gums. She also was losing weight far more quickly than she would normally expect.
Anita has been a patient ever since and has managed to maintain long term survival with the disease. Through that period, she has tried several different treatment approaches. Right now, Anita successfully controls her WM with ibrutinib (marketed as Imbruvica).
Not long after the diagnosis, Anita was starting to really feel the effects of the disease for the first time, and it wasn’t good. Anita’s first therapy was the chemotherapy agent fludarabine. She received five rounds of the treatment and it successfully lowered her IgM; thankfully, side effects were mild for Anita.
“It was not a difficult chemo for me.”
For around three years (until 2007), the WM was in remission and she was able to go without treatment. However, her IgM levels began to rise once again. She was put on a combination therapy called R-CVP, which was cocktail of the drug rituximab (marketed as Rituxan) alongside cyclophosphamide, vincristine, and prednisone. Unfortunately, this therapy had almost no effect on her WM.
The next treatment that Anita tried was bortezomib (marketed as Velcade), a proteasome inhibitor. Unfortunately the side effects were unacceptable and included severe and painful peripheral neuropathy.
“It gave me the worst neuropathy in the world.”
Anita would rule out Velcade as an option in the future as a result. After three years of maintenance therapy with the rituximab, Anita’s symptoms began to worsen again.
In 2011 she started five rounds of combination treatment with rituximab and bendamustine, another chemotherapy agent. Although this treatment was effective, this therapy also came with significant side effects.
“Very effective, but it gave me a lot of GI side effects that were very, very unpleasant.”
Unfortunately, remission did not last long; while Anita felt pretty good, a CT scan revealed that her lymph nodes were enlarged again by the end of 2013.
By January 2014 Anita was using ibrutinib, although it had yet to gain approval for use in WM. Within a few months, the drug had brought her IgM levels into the normal range and her lymph nodes were back to their regular size. Anita experienced some fatigue when she began treatment, but overall side effects have been minor.
“Within three or fourth months my IgM was in the normal range. It was also the only treatment that got my lymph nodes back to normal.”
Ibrutinib has turned out to be her ideal treatment. It has really been a breakthrough and has allowed her live a more or less normal lifestyle for the last five years and beyond. Some rare diseases have a variety of different treatment approaches. It is essential to have informed conversations with your doctor about which approach is best for your needs.
I first met Anita at the 2019 IWMF Educational Forum. Check out our story about the event here.
To learn more about the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), click here.
