Brad Adams was diagnosed with chronic lymphocytic leukemia (CLL) in 2010. For four years, he was on watch and wait at MD Anderson Cancer Center until 2014 when it was time for him to undergo his first round of treatment.
In this installment, the first of a three-part series, Brad describes his first round of treatment of fludarabine (Fludara), cyclophosphamide (Cytoxan or Neosar), and rituximab (Rituxan), a combination known as FCR.
Support for this series has been provided by BeiGene. Patient Power maintains complete editorial control and is solely responsible for program content.
Graphic: After being diagnosed with CLL in 2010, Brad Adams was in watch and wait until 2014.
Brad Adams: It's nerve-wracking. Because the way that do it at MD Anderson, they call you back and the nurse takes you back to the exam room, and she's holding a piece of paper. That piece of paper has all of your blood test results on it. So the first thing you want to do is grab that piece of paper and look at your CBC – your white blood cell count, or your absolute lymphocyte count, your platelets, and your hemoglobin, unless you’re clearly having symptoms. Like by the time March 2014 rolled around, I looked like a professional football player because my lymph nodes were so big, and my neck was thick with lymph nodes. I'd put on weight in my abdomen from lymph nodes. So it was clear that it was getting close to it.
And this is back in 2014. Really, ibrutinib (Imbruvica) was just coming onto the scene. And I think it was only approved for relapsed CLL patients, so I couldn't take ibrutinib, and I'm glad I couldn't. Well, I'm glad right now, maybe not later. So FCR was the only treatment option. I guess they could have done bendamustine (Bendeka and Treanda) and rituximab (Rituxan). But Michael Keating, who was my doctor after O'Brien left, he is the inventor of FCR. The inventor of FCR was working at MD Anderson while I was being treated with FCR, so, no, I did not research it in any depth before we started.
I consider myself pretty fortunate in my experience. It was supposed to be six rounds of treatment, and they were about roughly, I think the cycles are like 28 days apart, and it was three days of infusions. The first day, you would get all three of the drugs, and then on the second and third days, you would only get two of the drugs. So the first day usually took eight hours maybe, and then the next two days took four to six. And before the first round, they warned me about the reaction you might have to rituximab, and so that was nerve-wracking. And they gave me Benadryl and a steroid before they started pushing in the rituximab, and fortunately, I had no reaction.
And, at the time, I was working from home, so my laptop was my office. So I brought my laptop, and I worked for three days at MD Anderson in an infusion room without missing a beat. Now, when I'd go home after that day three, probably, about two days after that, I didn't feel very good for a couple of days. Kind of lousy. The PA said, "You'll feel malaise." You and I both, we've seen that word. I'd never experienced it. But now, I know what it means.
Now, after the first round, I think what happened was that my lymph nodes shrunk dramatically. And so my abdominal cavity, all of a sudden, the organs are moving around again, and I was in pain, and I ended up going to the ER. And they checked me, and didn't find anything wrong, and sent me home. Gave me pain medicine. And then, after the fourth round, the timing didn't work out right and so I didn't get my Neulasta shot as soon as I should have. And my white cell count went to zero, and I got a sinus infection, and my temperature went up to 101, which, at MD Anderson, is the trigger to go to their ER. So I did. They kept me overnight I think, maybe two. Looked me all over. Couldn't figure out what was wrong. The fever had gone down. They sent me home. That afternoon, I went to my ENT, actually, to the PA of my ENT, and she said, "You have a sinus infection." Gave me an antibiotic and I was better.
After round four, the PA at MD Anderson comes in and says, "You're in remission." And we hug, and we cry, and "You're through with the treatment," and so forth. And then she said, "Oh, wait a minute. Dr. O'Brien may want to do another round of treatment because your lymph nodes may still be outside the normal limits." And sure enough, Dr. O'Brien comes in, and he said, "Yeah, we've got to keep going."
So the high and then the low. And we did another round, and my lymph nodes had not shrunk that much. But Dr. O'Brien said, "You know, you didn't really – you had a tough time with this FCR." I didn't. I didn't think I had a tough time, but apparently, I did. "So we're not going to do round six. We're just going to quit. In your bone marrow, you're in remission. The lymph nodes are – yeah, they're a little bit bigger than they should be, but you're okay." So we finished, but I did five rounds instead of six.
Brad's CLL Series
“I’m the Guardian of the Clinical Trial”
Nichole Cruz, RN, BSN, OCN, describes her role as the “guardian” of a clinical trial: someone who ensures compliance and patient safety.