Edward Ratner, MD – Patient
As I finish my year-long, time-limited treatment for chronic lymphocytic leukemia (CLL), I have two questions: When do I celebrate? and What do I call myself?
I do have reasons to celebrate! After about 7 years of Watch and Wait (and worry), I started treatment with obinutuzumab (Gazyva) and venetoclax (Venclexta). I have previously written about the decision process for initial treatment in this article. That was based upon my experiences in the months leading up to starting therapy. Now, about a week after taking my last dose of venetoclax, it is a good time to again reflect.
Today, I can celebrate feeling better than I have in a long time. The initial month of obinutuzumab almost completely eliminated a variety of vague symptoms I had endured for several years, such as abdominal pains at night and leg cramps. Unfortunately, within days after starting venetoclax, I developed a productive cough that kept me up at night, associated with a runny and stuffed nose. A dose reduction after two months helped, but I barely tolerated the cough for the rest of the year. Standard treatments for allergic rhinitis (antihistamine and nasal steroids) didn’t help. Today, off venetoclax (and after several days of a different type of nasal spray, ipratropium), I would describe the cough and nasal symptoms as mild and improving. So, I could celebrate, but maybe I should wait until the cough resolves completely.
Statistically, my prognosis is very good. Research on initial treatment with obinutuzumab and venetoclax has shown a large majority of patients with CLL will have little or no detectable disease for at least 5 years, for those who completed a full year of venetoclax. Even with the dose reduction I required, odds are very good that I have achieved a full remission, by at least some definitions. So, I could celebrate completing the year on treatment, but maybe I should wait until next week when I find out the results of my end-of-treatment flow cytometry, to see how few CLL cells might remain.
My third alternative is to celebrate every day that I can enjoy my family, friends, and activities that bring me pleasure and fulfillment. Completing a year-long treatment process brings me closer to that place in my journey.
Since my diagnosis of CLL, I have progressively expanded the circle of people to support me in my journey. For the first several years, that included only my wife and a single close friend. Even after I began facilitating a local support group, few other people knew of my diagnosis. Treatment led me to need, and feel comfort from, support from most people I interact with regularly. Now that I have finished the planned course of treatment, I would like to label myself in some way. Yet the common terms used for those who have been on such a cancer journey seem inappropriate for me. I don’t feel like a “survivor,” “victim,” or “sufferer.” Each of those terms seem more passive than my experience. I cannot consider myself cured, only at best at the beginning of long-term remission. I invested much of about 20 days to my appointments and treatment over the year. That included my first ever, and fortunately short and uneventful, hospitalization. I had both the cough and a few weeks of intermittent diarrhea, but don’t look back and say I suffered. I would describe my experience as time-consuming and irritating. I also didn’t travel far (except the 90 minutes to Mayo Clinic), mostly due to anxiety about getting sick far from home or catching COVID. I simply got through the year, continuing to work from home, taking walks almost every day (regardless of weather) and spending time with my 3-year-old grandson.
I have looked for a word to now describe myself in this journey. I don’t like the common words used by those who undergo traditional cancer treatments, such as chemotherapy, radiation, or surgery, but haven’t found one for those of us who have endured a different set of challenges with targeted immunotherapy. I have spent a year thinking about my CLL every day as I took my pills, and almost every night as I sat up to cough. I also counted the days until I was done, but remained uncertain whether the treatment would be successful at achieving remission. There may be no good single word for the complexity of this journey, which continues.
I have much to celebrate, and plan to in a variety of ways. While I do that in the coming days, weeks, and maybe months (or daily for the rest of my life), I will continue to consider if there is a good label for my experience and response. Regardless, I have new confidence in my strength and endurance, and will use that for whatever comes next.
Dr. Ratner is a 67-year- old geriatrician in Minnesota who serves as a support group facilitator for the CLL Society. He has contributed several other articles to the CLL Society website.