I exhausted but I know there are people who are anxiously waiting for an update about my appointment. I have quite a bit to say but for right now I have just about enough mental energy to update quickly before I take a long hot bath and fall into bed.
Dr. Leonard is wonderful. He is a teacher in the way that you wish every doctor was a teacher. He patiently explained to me what the type of lymphoma I have means, how it will affect my life and how he will help me over time. He was genuinely warm and caring and somehow managed to explain the basics of my disease with enough enthusiasm and empathy that it almost didn’t seem as if he had explained it hundreds of times this week alone.
Dr. Leonard confirmed that I have low-grade, indolent lymphoma. He asked me to think about it as a hitchhiker in the car I am driving through my life. Most of the time this hitchhiker will sit quietly in the back seat. Occasionally, he will become badly behaved and fiddle with the radio. When this hitchhiker decides he gets to control the tunes we will take action to push him to the back seat again. Dr Leonard repeated the standard phrase I have heard many times now — “You will die with Lymphoma, you will not die from Lymphoma.”
We talked about how we will make the decision to treat this illness. He said there are three outcomes he uses when deciding to treat an illness. 1) To cure the disease 2) to make the patient feel better and 3) to help the patient live longer. Since follicular lymphoma is not considered curable that outcome is off the table. I do not have any symptoms and feel just fine so that is also a non starter. Interestingly, longitudinal studies that compare patients who are treated early with patients who wait to treat until they have symptoms show there is no clinical advantage to early treatment of follicular lymphoma. Dr. Leonard said while it is impossible to tell, in all probability I would continue to need no treatment for a few years. If my nodes start to grow or if I start to have classic lymphoma symptoms then we would move to treatment.
What treatment would we do? This is where the conversation got even more interesting. Dr. Leonard told me he believes it is his job to work to eliminate the use of chemotherapy for treating lymphoma. He said there are numerous other drugs available to us and new drugs in development that are promising. He said he would love to get me enrolled in a cutting edge clinical trial when the time was right. For now they enrolled me in a study that involves them banking some of my blood for analysis at a later date coupled with surveys every 6 months over the next three years. I am excited to help the researchers learn more about how to treat lymphoma better.
Dr. Leonard did give me a parting gift! In addition to several books about lymphoma he told me that I do not need to have a bone marrow biopsy at this time! He said he would probably order one when I need treatment but at this time he thinks I do not need to have needles poked into my bones. What a relief!
I plan to continue to see my local oncologist because I trust her and her office is calm. Dr. Leonard’s practice is an hour from home and the office itself is crowded and slightly chaotic. I am thrilled to have added the wonderful Dr. Leonard to my team. He is more than willing to consult with my oncologist and answer my emails and phone calls.
I am too tired to proof read this so please excuse the typos and random bits of unintelligible text.