I am very pleased to report I am still MRD Undetectable (UMRD) in the blood after 3 years on a Placebo in the Captivate clinical trial!! I believe I am in the Placebo arm of a trial, because the Imbruvica side effects totally went away. Imbruvica can have some side effects; my nails and fingertips have gotten so much better!
I have been in the Captivate clinical trial at UCSD for about 4.5 years. The Captivate trial combines Imbruvica with venetoclax, or Venclexta®.
See: https://cllsociety.org/2019/06/ash-2018-dr-nitin-jain-on-a-fixed-duration-of-ibrutinib-and-venetoclax-in-treatment-naive-high-risk-chronic-lymphocytic-leukemia-cll/ for more information about the results of the study.
Imbruvica is taken for 3 months, then venetoclax is ramped up; (20 mg to 50 mg to 100 mg to 200 mg to 400 mg)
This protocol worked great for me. I had very bulky nodes and the Imbruvica brought them down in about one week. It was amazing.
Debulking the nodes helps avoid Tumor Lysis Syndrome (TLS) which can happen when venetoclax works too well and contents of the nodes crash too quickly, releasing the content into the bloodstream faster than the body can process it.
Besides the normal side effects of Imbruvica and venetoclax, the combo tends to cause low ANC (neutropenia) for a lot of people. I had this issue and was given a Neupogen shot a couple times. Low ANC could be a bit of an issue since neutrophils are the frontline for our immune system.
Overall, I feel very good and normal.
I have had an ear infection and a toe infection over the last year but nothing antibiotics did not cure quickly. I have some itching occasionally.
I try to keep a healthy lifestyle with plenty of sleep (about 8 hours per night) and low stress. My CPAP really helps with my sleep as well.
I have gone on a couple of nice ski trips this winter so far. I am sometimes tired, but I used to be tired before my CLL diagnosis.
I continue to eat mostly vegan with a lot of good vegetables, fruit and nuts. I drink a lot of high-quality Japanese green tea and drink juiced turmeric. I drink 3-4 glasses of strong green tea in the morning until about 2 pm and then drink juiced turmeric in the afternoon with orange juice. I drink turmeric ginger tea or take turmeric supplements in the afternoon sometimes, but not that often. Green tea and turmeric oppose each other, so that is why I don’t take them at the same time.
I want to eat foods that hopefully fight cancer cells, not encourage them. I try to get a lot of sleep and exercise as well.
If you want to know more about nutrition, I recommend the movies, Forks over Knives and The Game Changers on Netflix, and the books, The China Study and Whole. Also, I suggest the book, N of 1, by Glenn Sabin. Being vegan is also very good for the planet and animals (good Karma)!!
Since I am mostly vegan, I take Vitamin D once a day ( 5000 IU) and B12 (2000 IU) once a week. I also started taking Vegan Omega 3 EPA/ DHA made from seaweed (that’s where fish get it too!!) When possible, I try to get most of my nutrients via whole foods.
I eat one Brazil nut a day to have a good selenium level (only one nut a day or my level gets too high). I have my B-12 and Vitamin D tested once a year. I am told too much Vitamin D can be problematic. As a vegan, it is good to take some B-12.
I feel very fortunate, lucky and blessed that I got to participate in the “I plus V” trial, given my 17P deleted, Trisomy 12 complex karyotype, unmutated cytogenetics, which started with large nodes.
Dr. Kipps says that based on my CBC blood work, no one could tell that I have CLL.
The CLL Society and UCSD have been very helpful along the way.
I will keep you posted.
So far so good!!
Mark is 56 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.
Originally published in The CLL Society Tribune Q1 2021.