I was diagnosed with CLL, Chronic Lymphocytic Leukemia more than 7 ½ years ago. Despite one relapse three years later, I’ve lived a normal life. I’ve continued to teach communications skills domestically and abroad. I have traveled extensively overseas to a dozen countries and joyously witnessed our older son’s marriage in November.
Nonetheless, when a notice arrived announcing a CLL Patient Forum, I was curious and intrigued. The invitation sat on my desk for several days.
“Why bother to talk with other cancer survivors?” I asked myself. I was doing just fine on my own. What would I learn? I’ve kept up with research through the internet and, in particular, a website called Patient Power, whose founder and host Andrew Schorr is a long-time CLL patient. I get my blood checked every 3-4 months. I know that the FDA has approved the first oral agent to treat CLL and that there is technology being tested in clinical trials to train the immune system to reject CLL cancer cells.
However, the MD Anderson Cancer Center, where I have been treated, and the CLL Global Research Foundation, launched by my hematologist Dr. Michael Keating, were sponsoring the forum. It would feature medical speakers including Dr. Keating, but also several patients. Some patients newly diagnosed and some who have been living with CLL for a very long time. Though the event was in Houston and I live in Maryland, I signed up.
The day of the event at MD Anderson I walked into a sea of patients. Everyone was smiling and excited to be attending. Many were from the Houston area, but one CLL patient had flown in from Australia to attend. Immediately, people including me began to talk with each other. We asked each other about our disease, how long, which type, which treatments if any (many CLL patients are what are called ‘watch and wait.’) Suddenly it became comforting to know that I am not alone. Intellectually, I knew that. Some 15-thousand Americans each year are diagnosed with CLL. But chatting with people like me, who wanted to know about me and I about them, was exhilarating.
Friends and family are loving and supportive. But while they can sympathize, they cannot empathize in the same way as another patient. And truthfully, friends and family may not want to listen to the details the way another patient patiently will listen.
What else did I learn?
• Future treatments may come from research for other diseases such as colon cancer.
• Future treatments for CLL may not require chemotherapy! Oral agents like the recently approved Ibrutinib and new targeted therapies soon may replicate chemo’s effectiveness to destroy ‘bad’ cells without damaging our healthy cells.
• There will not be a one-size-fits-all treatment because this disease, like so many, is unique for each patient.
• Raw data often do not translate into patient-friendly information, which is why patients need a good “interpreter” of the data.
• It is critically important to have a conversation with our children. When we withhold information for fear of frightening them, they often pull away from us. Kids need to be reassured that they won’t “catch” our disease like a cold or the flu.
• Patients, if feasible, should look for the nearest research centers for three reasons: They can seek a second opinion; they can learn more quickly about clinical trials; and they can receive more personalized treatment (NOTE: it’s not always possible for patients to do this)
As for the best way to talk with our doctors for any type of visit:
• Pull together IN ADVANCE a list of questions and write them down. I tell my workshop participants that no one thinks and speaks at the same time and does it effectively. We need to prepare.
• Focus on the issues that worry you the most.
• Focus on a particular topic for that appointment. Medications? Next steps? Side effects? You decide in advance.
• Bring a family member or friend as a second set of ears. Again, from my workshops, memory retention is a paltry 10%. We patients remember very little, especially when we are stressed.
• Record the conversation. Dr. Keating made this suggestion, so get the OK from your physician to pull out your smartphone. That way you can review the information later, relaxed and un-hurried. Then listen again.
I learned so much during this one-day patient conference. Mainly I learned that going it alone is not the only way and probably not the wisest way to feel ‘normal,’ that in fact we patients draw strength by sharing knowledge with other patients. A powerful lesson indeed.