Sue is
Blood Cancer United

My story begins with a routine yearly mammogram in April of 2020. I am currently a 25-year breast cancer survivor. So, regular mammograms are just a part of my yearly routine, a simple procedure that I endure yearly with no big issues to speak of ― until now. During the mammogram, they noticed enlarged lymph nodes. My doctor thought it was no big deal, and we would watch them for two weeks and then do another mammogram. I wasn’t worried. She explained that I could be fighting an infection or that I just had large lymph nodes as a normal thing. So, two weeks later I’m back, and the size of the nodes hadn’t changed. A biopsy was ordered. Then three days later, I was called and told by the very same doctor that I had chronic lymphocytic leukemia (CLL). She told me she really didn’t know much about it and would tell my oncologist. She didn’t offer much information, and I felt like I was just left hanging with a devastating diagnosis and on my own. I hung up the phone and felt complete helplessness. That was May 1, 2020. My weekend was shattered. How could I have cancer again?

This cannot be real. So, of course, I turned to Dr. Google and was completely devastated by everything I read. Luckily, I found a few CLL support groups that same weekend. Some very kind and knowledgeable people were able to talk me off the ledge of the unknown and help me see that there was light at the end of this tunnel. Most encouraged me to seek out a specialist. I found a specialist and called to make an appointment. I met with an amazing doctor who told me I was stage 4 and needed to start treatment immediately. Three different treatment options were presented to me. I took the options home and started researching and asking other CLL patients for advice. I also asked my doctor if I were her sister (a sister who she likes A LOT), which option she would choose. She said a new clinical trial that includes Bendamustine®, Rituximab®, and Venetoclax® was the route she would choose. So, after a lot of research, input from others, and prayers, I decided to start the clinical trial. I started treatment the following month. The clinical trial would be 16 months, and I was prepared to do whatever it took to knock this CLL beast down.

I was very lucky in that I didn’t have any side effects from any of the treatments I was given. I was able to handle all of them relatively well. During treatment, I started working out daily and also added walking to my daily routine. The walking turned into some running and some stair climbing too! I feel the best I have in years! I reached MRD negative in my blood on April 16, 2021. Then on September 8, 2021, I reached MRD negative in my bone marrow! My clinical trial is now over, and I’ve graduated from monthly doctor visits to visits every three months!

I must say I was devastated by the diagnosis, and the wind was definitely knocked out of my sail. But I have found some amazing friends in these support groups, and I knew I wasn’t alone. Now, I’m MRD negative, and I try to encourage other “CLLers” that there is a light at the end of the tunnel. The new treatments are amazing, and I want others who are new to the CLL journey to know they are not alone.