David Rampe: Living With Chronic Lymphocytic Leukemia Since 2006
I was diagnosed with chronic lymphocytic leukemia (CLL) in 2006. CLL usually progresses slowly, so there was a period of “watch and wait” before I needed treatment. In late 2013, I started treatment with a drug that had just been approved by the U.S. Food and Drug Administration (FDA), and now I am in remission and I feel fine. Even if my disease relapses at some point, I am confident that other new drugs will be available to help manage my condition.
I was 48 when I was diagnosed, which is young for CLL. A routine physical examination showed high white blood cell counts, specifically the lymphocytes, which we thought resulted from a case of bronchitis. But the same thing showed up the next year, and my family doctor consulted a hematologist, who said, “That could be CLL.” And so it was.
I didn’t have any symptoms except for the elevated white blood cell counts, so we did “watch and wait” for 7.5 years. I would visit my hematologist-oncologist every three months for checkups and blood tests. During 2013, however, I got progressively more anemic as my blood cell counts dropped, and so did my platelet numbers. That’s called thrombocytopenia, and it meant that the CLL was impacting my bone marrow. I also started to get some swelling in the lymph nodes around my jaw and some swelling in my spleen. I was getting very tired – just going up a couple of flights of stairs left me out of breath. In December, the anemia and the thrombocytopenia were bad enough that it was time to pull the trigger and start some form of treatment.
The standard treatment for CLL is a chemotherapy regimen called FCR for the drugs involved, fludarabine, cyclophosphamide, and rituximab. It works well, but it can cause damage to the bone marrow and other problems down the line. So I wanted something that was new and more targeted toward the cancer itself, and something that would be a little bit gentler on the rest of my body.
My hematologist and I decided to go with obinutuzumab, a monoclonal antibody that had just been approved by the FDA under the brand name Gazyva. It works by attaching itself to certain proteins on the cancer cells and killing them; it also helps the body’s immune system go after the cancer cells.
I had eight infusions over six months. I started just before Christmas 2013 and finished in May 2014. There were a few side effects during the treatment. My anemia got worse and I needed a transfusion to get my hemoglobin and hematocrit back up. And I developed a cough that lasted for weeks. But overall it was pretty easy, looking back on it.
Now I feel great. All my blood cell counts have returned to normal, except that I have low numbers of lymphocytes, but that’s the whole idea behind the treatment. My hemoglobin, platelets, neutrophils, and everything else is absolutely fine.
A few years back, I thought the future was not so bright. The treatment options were limited. But now it looks like there is really going to be a big change in the way that CLL is treated. In addition to obinutuzumab, several other drugs have been approved by the FDA as treatments for CLL in recent months. None of these are curative, but they all seem very effective and I think these new treatments are going to have a significant effect on the natural course of the disease.
I am a pharmacologist myself, so I understand the science behind these drugs, but I still find them amazing. I think that with all the improvements and breakthroughs that are happening in science today, we are really on the cusp of eliminating cancer as we now know it.
A couple of years ago, my daughter asked me if she could also develop the type of cancer I have now. And I said yes, I suppose it is possible, but don’t be concerned, because it is my firm belief that by the time you get to be my age, virtually all cancers will be either preventable, curable, or treatable, similar to how we can treat high blood pressure now. I really think we can look forward to that for the next generation.