By Mark Hoffman – CLL Patient
I am pleased to give an 8 year update.
I was first diagnosed in January of 2016. You can see my 3 year article update here. I unfortunately progressed quickly having large lymph nodes and my FISH test revealing 55% 17p deleted and trisomy 12.
Fortunately, through knowledge gained via CLL society I was able avoid cytotoxic chemotherapy (FCR) and to find the Captivate trial at UCSD. This trial combined ibrutinib with venetoclax. I switched from a local hematologist to a top CLL specialist Dr. Kipps at UCSD (a regional cancer center). The local hematologist recommended FCR. I had to remind him that my cytogenetics were not tested. The local hematologist was trying to push FCR as the “gold standard” discounting the new targeted drugs. He was not up to date with respect to modern CLL treatments. After testing I found out I was 17p deleted so FCR would have been very bad. This might be the most important knowledge and decision I have ever made.
I began the Captivate trial in January of 2017. I responded well having my large nodes go down in 1 week and my numbers improving dramatically within months. Fortunately, I achieved uMRD status by March of 2018 meaning undetectable measurable residual disease. When tested, no CLL cells were found in my blood.
Getting to uMRD qualified me to be randomized to either stay on ibrutinib or a placebo of ibrutinib. I originally thought I was on a placebo because there were more side effects when I was on the two drugs, ibrutinib plus venetoclax. The one drug alone did not have as many side effects. Over time I did realize the side effects were there though. My main ibrutinib side effects are weak nails and fingertips with dry skin. Also, some muscle cramps and difficulty swallowing at times.
One other thing I noticed is when I paused for a few days of taking ibrutinib an itchy feeling on my body increases. The ibrutinib seemed to control the immune system for itching.
The Captivate trial was ended in March of 2023 and I switched to taking ibrutinib on a prescription. Abbvie has a program that covers my copay, so I have no out of pocket expense this year. I will see what happens next year.
Dr. Kipps recommends I stay on ibrutinib over the newer drugs since it is so well test and I am doing okay. He also recommends that I stay on treatment with ibrutinib because I was 17p deleted and he wants to keep pressure on the disease.
Overall, I feel very fortunate that I have done so well given my initial diagnosis. The target drugs like ibrutinib and venetoclax have shown very good results, especially as a combination.
Unfortunately, the US FDA has not approved the V plus I combination yet. They appear to want to study the side effects more before approval. With that said some doctors approve the combo off label and insurance many times pays for it. A person maybe on ibrutinib and then the doctor add venetoclax and the insurance may then pay for both.
Fortunately, my immune system has been good since I have been on treatment. I did test positive for COVID-19 recently, but I was only sick for two days! I had received the COVID booster about six weeks earlier, which I think helped lessen the severity. My IgG, IgA and IgM are close to normal.
I have been able to continue my activities such as biking, back packing, and scuba diving.
I need to thank CLL Society for all their good work on behalf of the CLL patients and the immunocompromised.
