This is the story of how I got to the treatment that was most likely by far the best for my genetics.
I was first diagnosed in January 2016. I was diagnosed by a general hematologist and he put me on Watch and Wait.
A good friend of mine suggested that I should get a second opinion at the University of California San Diego (UCSD), which I did. It took a little while to get in, but it was well worth it. I continued seeing both doctors for another 6 months.
After six months, the general hematologist flat out said I needed to be treated with fludarabine, cyclophosphamide and rituximab (FCR). He provided no real explanation and only said, “It’s the gold standard”. Perhaps either ignorance or financial issues caused the general hematologist to be very biased towards chemotherapy. Another orthopedic surgeon I know explained to me that Doctors do not make money if they just put a patient on a prescription drug….
I asked about ibrutinib in the past and he told me all the negatives about it, specifically talking about bleeding in the brain and other stuff. He never told me about the negatives about FCR, such as damaging the bone marrow, increased risk of secondary cancers and other disorders I recall. He gave me the medical orders and told me to schedule it. Fortunately, I was educated about what needed to be done and the trade-offs.
I asked him, “What about my genetics?” and he replied, “Oh yeah, we need to check that- I thought we did.”
I remember walking out of his office with the orders in shock. I thought I was supposed to be on “watch and wait” for a while. I later remembered the Doctor saying that he puts people on watch and wait for 6 months then starts treatment for CLL. This is very wrong since many patient don’t need treatment for many years. At this point my WBC was still less than 30,000.
I decided to just continue to watch and wait and to work closer with UCSD on possible clinical trials. There was a trial available that was studying the combination of ibrutinib and Obinutuzumab and I was encouraged to consider it.
I signed up for the trial and had my FISH test performed. Unfortunately, the results showed that over 50% of my cells were 17P deletion and I had Trisomy 12 as well.
At that point, I still felt OK. I started to think about the negatives that the pro-FCR doctor told me about the ibrutinib therapy (which was helpful in this situation). He gave me a bunch of negative articles on ibrutinib as well. People with 17P Deletion on Ibruvica unfortunately sometimes have their disease progress after about 30 months. People who have never had Cytotoxic Chemo Therapy are less likely to progress as quickly though.
In general, the less Cytotoxic Chemo Therapy (FCR, BR) one has the better then new targeted therapies respond.
It was a difficult decision but I since because I was still feeling OK and 17P deleted, I decided to watch and wait further. I might have started treatment but I had to do a root canal for a tooth resorption. Sometimes a root canal can be a good thing.
By this time, it was August 2016, nine months after my diagnosis. I wasn’t sure what I wanted, but I kind of knew I wanted to have a treatment that included Venetoclax.
It was a very good thing I waited because if I started the first trial I would have NOT qualified for the trial I really wanted. Trials are tricky since you must have the characteristics they need.
After another couple of months, I had a doctor’s appointment at UCSD with another UCSD Doctor and found out they were opening a Venetoclax plus Ibrutinib trial. Through my own research and the resources on the CLL Society website, Support groups and other online videos I decided this was the treatment for me.
Unfortunately, the trial would not be open for me to join until early 2017. At the same time unfortunately, my CLL started to progress; my lymph nodes in my neck were getting very large and my counts were going up. I was also starting to get fatigued and was losing weight. My WBC was now about 50K and rising.
At this point, I knew I was ready and I needed treatment soon. Unfortunately, I still had to wait another month and deal with very big nodes and fatigue before the trial is ready to start. My WBC peaked at about 90K.
I have been on the trial since January and as of this date, my numbers are pretty much all back to normal or even low. My white blood cell count is 4K. I have some side effects from the drugs but they really have not been too bad so far.
The clinical trial protocol is a bit rigorous, but it’s also, in some ways, easy because I have a clinical coordinator who acts as a concierge for my treatment and appointments. Also because I’m being treated within a clinical trial, I’m being watched very closely because they want to have very accurate information for the study.
The hope of the trial is to get to a deep remission (MRD negative) with the two drugs and then to possibly discontinue treatment with both drugs for a while.
I have heard of people who were on Obinutuzumab plus Venetoclax doing that already.
I have to thank the CLL Society website and UCSD for great advice and treatment so far.
Mark is 53 yrs. and lives in San Diego with his wife and 3 children. He was diagnosed with CLL is December of 2015. He enjoys biking, back packing and other outdoor activities.