Hello,
I am very pleased to report I am still MRD Undetectable ( UMRD) in the blood after 2 years on a Placebo!! I know it is a Placebo because the Imbruvica side effects totally went away. Imbruvica can have some side effects...:). My nails and fingertips have gotten so much better!!
I am now ~ 3.3 years ( 41 months) on the Captivate Clinical trial out of UCSD. The Captivate trial combines Imbruvica with Venetoclax.
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 1 week. It was amazing.
Debulking the nodes helps avoid Tumor Lysis syndrome 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 for a lot of people. I had this issue and was given a Neupogen shot a couple of times. Low ANC could be a bit of an issue since Neutrophils our 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 ( ~8 hours per night) and low stress.
I have done a couple of nice ski trips this winter so far again. I am some times tired but I use to be that way before CLL as well. My Cpap really helps with my sleep as well.
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 till about 2 pm and then drink Juiced Turmeric in the afternoon with OJ. I drink Turmeric ginger Tea as well and take some Turmeric supplements in the afternoon ( but not that often). Green and Turmeric oppose each other so that is why I separate them.
I want to eat foods to hopefully fight cancer cells- not encourage them... I try to get a lot of sleep and exercise as well.
I recommend the movie "Forks over Knives’ and the "Game Changer's " on Netflix and the book the China Study and Whole if you want to know more. Also 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 food.
I eat 1 Brazil nut a day to have a good Selenium level ( only 1 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 the I plus V trial given my 17P deleted, Trisomy 12 complex karyotype Unmutated Cytogenetics starting with large nodes.
Dr. Kipps says that based on my CBC blood work no one could tell that I have CLL.
I did feel a small node ( < 4 mm) that came up about a month ago up but it appears to have gone away mostly- I believe ( < 1 mm).
CLL Society and UCSD have been very helpful along the way.
I will keep you posted.
So far so good!!
Be well,
Hoffy
What symptoms of CLL do I really have to worry about?!
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