At age 50, I was diagnosed with CLL in September 2013. All I heard from the doctor was “you have leukemia and we’re going to just wait and watch it!!” What? That can’t be right. I have cancer and you’re going to do nothing? I contacted the Leukemia and Lymphoma Society and started learning as much as I could. I first heard Brian Koffman speak at my first LLS conference. He helped me understand how I could play a bigger role in my care. I was empowered to be an active participant in my care and not a passive observer. Thank you!
As time went by, I learned about the CLL Society at an LLS conference.
In June 2019, my general hematologist told me that my numbers were high and that I would need to start treatment. I panicked! My thought was “no, it isn’t time to start treatment”. My white count had increased some but not doubled, and I had learned that a high white count alone wasn’t enough of a reason to start treatment. All my other numbers were within a normal range and I was asymptomatic. (I was also losing my medical insurance in July!)
I went to the CLL Support Group at the City of Hope and shared my feelings and thoughts about being treated. Someone suggested that I get a second opinion with a CLL Specialist at the City of Hope. I was able to see Dr. Siddiqi in August 2019. She examined me, reviewed my numbers and agreed that treatment was not warranted at this time!
In October, I saw my new general hematologist (even though I still go to the same office). I explained that I had seen Dr. Siddiqi and he asked why. I said I thought it was a good idea before I was treated to get another opinion. He agreed. He also agreed that I did not need treatment. We talked about current treatments for CLL. I showed him the postcard that the CLL Society created to help doctors provide current information to their CLL patients. When I went to the front desk, I told them about this resource for CLL patient information. The staff was excited. They said they really needed something like that! (I left the postcard with them.)
My current hematologist is Dr. Banta. (I’ve seen three, now four, different hematologists at this office.)
I have noticed in the last six months that my throat feels sore and tight, on and off, and I seem to be choking on things – even just water, not consistently but enough to where I noticed and thought it was odd. In February 2020, I shared this with my general hematologist. I also had a phone appointment with my primary doctor who prescribed antibiotics. She told me to call if it didn’t get better. My throat was better for about a month and then it was sore again. In May, I talked to my hematologist via phone appointment, and he ordered a FISH and IGHV for my September appointment. (And thanks to LLS and the CLL society I actually know why these tests are important!)
In the meantime, since my sore throat had returned, my primary physician referred me to an ENT. I had a phone appointment with the ENT in August. She ordered a CT of my sinuses and neck, which was done in early September.
When the results came in, she wanted to meet with me in person. She said my sinuses were clear but she was concerned about my throat. She said my sublingual tonsils were extremely enlarged. Then, she showed me the CT scan and pointed out other lymph nodes that were enlarged in my throat. My response was “well, doesn’t that make sense because I have lymphocytic leukemia?” But she wanted to do a biopsy to be sure. I told her, “No”, that I wanted to confer with my hematologist and my CLL specialist before I would consider that. As she was reading through my bloodwork, I realized she wasn’t familiar with CLL at all. I was able to tell her what numbers we typically focus on when I talk to my hematologist.
The ENT took my case before a “tumor panel” made up of a hematologist, an oncologist, and a tumor specialist. The panel determined that a biopsy was not needed. But they recommended I get immediate treatment to resolve the CLL; the treatment they wanted to do was chemo. Again, I told her, “No” – I need to talk to my hematologist and my CLL specialist before anything is done. I know that chemo is no longer considered an appropriate treatment for the majority of CLL patients.
I have since spoken to my general hematologist, and he confirmed what I had seen in my blood work – my numbers are good. We discussed my FISH and IGHV results and that my disease is progressing, but slowly, and my prognosis is good. Every month that my treatment is delayed, the more research is done, the more discoveries are made, the more therapies are approved and the greater the likelihood is that I might get better insurance that can pay for treatment!
This may sound odd but when I heard the results of the panel recommending “no biopsy”, I felt vindicated. I was so proud of myself for pushing back and sharing what I know. I was a smart patient and didn’t just follow along. And I know chemo is not appropriate for CLL treatment. And I know this because of all that I have learned through the LLS conferences. But more specifically, I know about CLL due to the CLL Society.
Through the Leukemia and Lymphoma Society I have a general understanding of my cancer. I have been given the tools to be proactive, to learn all that I can, and to make smart choices about my health and my treatment. The CLL Society has provided me with detailed knowledge about CLL, treatments and a knowledgeable Support Group that is there when I need it.
Unfortunately, I have computer issues so I am unable to do any Zoom meetings, so I can’t connect with the support group in the Covid world. So, I really appreciate all the online newsletters because it helps me stay connected!
Thank you! What you are doing is so important! Words cannot express how much I appreciate all that you do! I don’t feel quite so alone in dealing with my CLL.
Ramie Case was diagnosed with CLL in 2013 at the age of 50. She has made it a point to be very vocal and transparent about her leukemia with family and friends. It’s important we talk and share with each other to help dispel fear with facts and support each other. Everything she learns, she shares…even with other doctors!
Originally published in The CLL Society Tribune Q2 2021.