CLL leukemia: Just diagnosed, what can be done?

Hi Kellim, I am 84 and diagnosed w CLL just over 2 years and have been under care of a hematologist. I have an enlarged spleen over a year and some swollen lymph nodes. I started to have days of extreme fatigue in between days of normal energy. When my WBC hit 280k with RBC at 9.1 Il they said it was time to start treatment with Calquence 100mg 2xday. I was in denial and scared so refused. Talking it out with family & friends helped me to remember that I am fortunate to have a cancer that they have targeted oral chemo for & also that I could stop anytime. It’s been 5 months and my WBC are down to 15k and RBC up to 12.1 I have had no significant side effects, except a bit edgy anxious and now after 5 months I’d say I have a hard time staying focused on one thing and am confused alot. Let’s call it “chemo brain”. I plan to ask the doctor about this at my mid January check-in. Does anyone else on Calquence, or with CLL have this issue?
I am pleasantly surprised to be able to enjoy an active lifestyle and am feeling good most of the time so far, despite CLL. Be encouraged!

I don't know where the idea that Mayo "suggests 2 cups per day" of green tea comes from. Two cups are just a nice refreshing drink--it will do nothing for CLL. A healthy diet is always wise and perhaps green tea is a part of that. As a participant in the green tea study in 2008-09, I can tell you that the maximum dosage was 2 grams twice per day. In my case the dosage was reduced numerous times due to elevated liver enzymes. Eventually I got down to the minimum dose of 400 mg twice per day, and then taken off the study when it still affected liver enzymes. EGCG is NOT a harmless supplement. Be careful if you're taking it without close monitoring. As for the conclusion of the study (which didn't get to Phase III), this is a quote from Dr. Neil Kay, one of the principal investigators of the study: “Without a phase III clinical trial, we cannot make a recommendation that EGCG be used by CLL patients, but those who want to take supplements should consult with their oncologists and need to receive appropriate monitoring using laboratory tests.” Note: I was diagnosed in 2006, and have been a Mayo patient since 2007, currently on a clinical trial BTK inhibitor and doing fine. I don't drink green tea (unless it happens to be an occasional glass) or take EGCG and never would.

The exact amount participants took, of EGCG, I can not recall. Sorry. I do remember Mayo said to use 2 cups per day to be less likely to cause liver problems. So, I've been drinking 2 bags of green tea in 1 cup of hot water after my breakfast every day for the past 14 months. I listen to my body. If I'm craving tea, I have 1 bag in a cup in the afternoon or evening. Then I'm sure to follow it with 1 or 2 glasses of water to stay hydrated. I eat 2 boiled beets per day in addition to drinking a cup of beetroot or beetroot/carrot juice b4 breakfast everyday. As far as I know, my labs are unchanged. I feel well.

My husband was diagnosed 20 years ago when he had blood work done for a simple cosmetic procedure on his face. To date he has had no treatment. He has blood work done every 4 months. His white count goes up and down but has never reached a level where intervention was required.
In 2014 he survived a very serious case of sepsis. The oncologist was amazed that at age, 73, and even with CLL, his immune system responded quite well to the infection. He’s still kickin it at age 82.

Thank you so much for such an encouraging message!!! I truly appreciate it!!!
MaryAnn from Boston

please explain-per your doctor-how this tiny amount affected your liver enzymes- i have been taking EGCG for 7 years-5-10,000 mg daily and enjoy a vodka every night before bed-happy new year

also take milk thistle for liver-did your m.d. ever recommend this ?

Common side affect of high dose ECGC. Diagnosed by blood work. If you’re not affected then go for it.

I worked liver transplant and milk thistle is dangerous for your liver can cause damage.

take it every day-doc did not recommend