Jun 25, 2020 Latest post:
Sep 10, 2020
Here is my story as it unfolds. If you are here reading “hello”😉. I was diagnosed in summer of 2014 with Chronic Lymphocytic Leukemia(CLL). It was first detected through routine blood work I had to get every 6 months because of a particular medication I was taking at the time. My doctor at the time was concerned about my elevated White Blood Count not going back down to normal range after 6 months and my lymphocyte levels were indicating something was going on as well. So Dr Fry referred me to an oncologist/hematologist to rule out any blood cancer. This new dr was suspecting chronic lymphocytic leukemia based on my current labs I came in with. In my mind there was NO way I would have the same type of blood cancer my dad had when I was growing up because: 1. It wasn’t known to be hereditary (at the time) 2. It was typically diagnosed in old men and 3. blood cancer was just NOT going to fit into my life. I had to wait about 2 weeks to get results back. But I really wasn’t too concerned to be honest because the type of blood cancer they were suspecting within me was considered an “old man’s” cancer (seriously- all of the pamphlets and resources of info they provided me said “old men” and the pictures were ALL old men using canes or in wheelchairs with grey hair). Lol. Kinda laughable looking back. Maybe I can become the newer generation pamphlet picture. Hahaha So I went in to my appointment to discuss results and what a shocker it was for me to hear the words “Adrienne you have Cancer” and “it’s the same type your dad had years ago”. I was in shock to be honest. I was 39 at the time-much too young to get this old person cancer AND I had too many painful memories buried within from seeing my dad go through what he did before he died at 58 years old. Needless to say, I went on to receive 3 other opinions from specialists and all 3 were the same. I have Chronic Lymphocytic Leukemia (CLL)and Small lymphocytic lymphoma (SLL). CLL and SLL are primarily the same disease, but CLL cancer cells are found mostly in the blood and bone marrow. In SLL cancer cells are found mostly in the lymph nodes. Some people can have CLL without SLL or vice versa. Or there are extra special people like myself that have both CLL and SLL. CLL/SLL is a type of non-Hodgkin lymphoma.
After being diagnosed I was put on what doctors refer to as “Wait and Watch”. This means that no treatment is needed/recommend at this time. People can be on Wait and Watch for years. However, early on some of my genetic markers indicated that I would probably need to start within 5 years from diagnosis. They were pretty dang close. Over the past 5 plus years since original diagnosis I have been primarily under the care of Dr. Javier Munoz at MD Anderson Banner Care in Gilbert. I went for lots of blood tests, scans, bone marrow biopsies, genetic testing to help monitor the progress of disease within me. I was told last Dec 2019 that the direction I was heading was towards starting treatment in 2020. Dr Munoz suggested this would be a good time to get a second opinion from a colleague of his over at Mayo Clinic Phoenix(Dr. Leis). I got in to meet with Dr. Leis fairy quickly at Mayo and connected with him right away. He agreed with me needing to begin treatment this and suggested he had a trial for me if I was interested- um, heck yes I want to be in the trial. It is a trial that has already be underway for over a year with promising long lasting effects with the “younger” CLL population. Fast forward to today- Dr Leis is my main doctor now at Mayo and my previous Dr that referred me, Dr. Munoz, has since transferred over to Mayo as well. Coincidence? Who the heck knows. I just know they are both very reputable specialists within the CLL community and I am grateful I am able to be in their care❤️ I have been assigned a trial coordinator named Cammeron that helps me with all my planning of appointments and pretty much will hold my hand throughout this journey. Cameron is on top of his stuff so it makes me all the more excited that he is my go to guy. The trial: The trial I am starting consists of 2 arms. One that has 2 drugs and 2nd arm has 3 drugs. All of the drugs have been used in treating CLL/SLL for a while. However, it’s the combination of the drugs being used together and for a specific duration of time 18-19 months vs indefinite(for life) use of 1 drug which is current standard care. Selection for Arm 1 or Arm 2 of the trial is selected through a generated computer program🤷♀️ I won’t know which arm of the study I am in until month 3. Moving forward I have a big day of testing on June 25th-scans, bloodwork and another bone marrow biopsy. I should I have one more IVIG infusion day(trying to help build my immunity up) before I actually start treatment. As of right now Treatment is to begin July, 8th. Treatment will be a combination of infusions and target therapy drugs and immunosuppressant drugs that I will take orally. For those that want to follow along I will keep you posted on here as I walk, crawl, run on this newer part of life for me. I am scared, I am hopeful and I am confused just as much as you are. I am sure I will keep it real cause that’s what I do.