This article was written by Beth Smith who was diagnosed with CLL in 2023.
I learned I had CLL after a checkup, the bloodwork came back and the doctor said my white blood cell count was higher than normal. Further testing showed the type of white blood cells which were out of balance were specifically B-cells, the immune system cells that monitor the bloodstream to check for bad bacteria or viruses. The doctor said they were all replications of the same mature B-cell and had a similar protein pattern that labels them as chronic lymphocytic leukemia (CLL), a type of cancer that is typically slow growing and affects B-cells located in the bone marrow, bloodstream, and sometimes lymph system.
How can I have cancer? I’ve been trying to do my best to eat healthy, exercise, etc. I felt shock, fear, sadness, and so many other overwhelming emotions. When we got out to the car, my husband held me while we both cried. He’s always been my biggest support and said Beth, you have a choice, you can live in fear or faith, both can’t exist in the same space. A huge wave of peace washed over me filling me with calm, love, and an understanding that I was deeply loved, God is mindful of me, and things are going to work out. I don’t feel like I self-conjured that up, I’ve done mindfulness and other meditation/therapy techniques before and at the time wasn’t actively trying to work through my emotions. I’m grateful for the support from my husband and the extra boost of peace I needed from God right then.
I have cancer but I can't start treatment yet?
I was referred to a local hematologist-oncologist (blood cancer doctor) who had experience treating CLL patients. That helped me feel more reassured that he has seen this before and could give me more answers. To that point, I had only ever associated medicines that treated cancer with chemotherapy. I was told that there were actually newer medicines to treat CLL that were not chemotherapy called targeted medicines. They target mainly the CLL cells to reduce them to a lesser or undetectable state achieving a remission for multiple years. They were not, however, a cure for CLL as the cancer cells eventually resurface and another round of treatment is needed. I asked, “When do I start treatment then?” The doctor said that I would actually not be needing treatment right now and they were going to monitor the progression of the cancer during a period called watch and wait.
Why can’t I start treatment right away? I was just told I have cancer, and if it hasn’t progressed to a deadly point why can’t we treat it while it is still small, wouldn’t that be more helpful? What I was told is that because the targeted medicines don’t destroy the CLL cells forever and only help manage the disease, further treatment would be needed so if the CLL wasn’t currently causing issues related to how I was feeling then it would be better to wait to avoid medicine side effects as long as I could. As well, BTKis if taken over a long period of time can cause the CLL cells to mutate to which the cancer cells will no longer respond to treatment. The doctor recommended when I do need treatment, to try a fixed-duration targeted therapy combination of venetoclax with an antibody medicine obinutuzumab.
I was frustrated, doesn’t the body frequently come across damaged cells and recognize them as ineffective to at which point they are destroyed to keep the body healthy? The body should still be smart enough to see that these cancerous B-cells cells are not normal and destroy them like they do other virus-infected cells.
CAR T and hope for the future
While researching, one of the things I came across for blood cancer treatments was immunotherapies. Medicines that strengthen the immune system, instead of the targeted therapies like BTK inhibitors or a venetoclax/antibody combination which suppress the immune system. CAR T-cell therapy popped up, a way to strengthen the body’s cancer-killing T-cells and there were two CLL patients that 10 years ago had gone through CAR T-cell therapy and were still disease-free to this day?! Why wasn’t this a bigger deal?? Why isn’t this approved yet for CLL?
Researching apparently CAR T is in clinical trials for CLL although is approved for other types of blood cancers and is reserved for patients that have tried other types of treatments like BTKis and venetoclax and become unresponsive to them, saving the treatment for higher-risk patients. Are you kidding me… if BTKis and venetoclax only help give extra years but don’t cure it, I feel like doctors should be mainly focusing on enhancing the body’s immune system to cure the disease with immunotherapies like CAR T.
Here I am, not yet even qualified to have a disease progressed enough to start a targeted treatment combination like venetoclax + obinutuzumab and would be in watch and wait like a sitting duck. I feel like I’ve done everything in my control research-wise and trying to still live a healthy lifestyle to help extend my length and quality of life to enjoy more time with my husband and kids.
I’ve accepted this is something I will likely live alongside of and manage with targeted therapies if I ever need treatment, and am hopeful that if for some reason targeted therapies don’t work I can qualify for and enroll in CAR T. For now, I’m going to live my life to the fullest, enjoy the moments I have, and trust God that there is life after this mortal period, things are going to work out. I know I haven’t been through all the medicines or have side effect solutions to share like other CLL patients, but hopefully what I have been through will help someone. Best, -Beth.
about the author
Megan joined HealthTree as a Community Coordinator for CLL in 2022. She is the daughter of a blood cancer patient and has found a passion for helping support patients and caregivers to advance research for their cure and improve their quality of life. In her spare time, she loves to be around family, sew, and cook.