CLL Watch and Wait supplements/diet

Actually my labs were better this time. I did start taking magnesium. I have CLL. I guess I will add your other supplements and see what happens… so Lysine, vitamin C and D .what is EGCG. I do take a multi vitamin…is that enough?

@54321kl. I take Vitamin D and plan on adding magnesium. What is EGCG? How long have you had CLL? Hopefully the supplements will improve lab results

I was just wondering if anyone had any results to share if they had taken them. EGCG is found in green tea. I am going to discuss with my hematologist/oncologist this week. I have read studies and vitamin D did help increase time to treatment.

I was diagnosed one year ago. EGCG is in green tea. My WBC is normal just the lymphs are slightly elevated so far. I just want to be proactive.

@54321kl Thanks for responding I was also diagnosed one year ago with elevated lymphocytes. No other symptoms at that time. Lately I’ve been feeling tired. I’m scheduled to have bloodwork done late December but probably should do sooner. I’m not being followed by my Hematologist as I am considered stable. Being followed by my Nurse Practitioner. Kind of nerve wracking…….

You might be interested in this older discussion with members who have CLL and were curious about EGCG.

Chronic Lymphocytic Leukemia: Study of green tea extract inconclusive
https://connect.mayoclinic.org/discussion/chronic-lyphocetic-leukemia/
It’s important to discuss the use of supplements with your hematologist. Some can interfere or interact with medications or have unpredictable side effects. Especially if you’re taking other meds. I had AML and wasn’t able to consume turmeric and had to avoid pomegranate and orange juice for a period of time. Innocent foods that you would think are innocuous. But they can have serious consequences in some situations.
How long ago were you diagnosed with CLL?

I found the article on Vitamin D and CLL. By coincidence, I am taking that supplement for osteoporosis but my level was in the normal range before I started that. No one has monitored it for CLL.
https://cllsociety.org/2024/10/more-vitamin-d-in-early-cll-improves-treatment-free-survival/
https://pubmed.ncbi.nlm.nih.gov/27333923/

I am not sure anyone would monitor for CLL since it's in research phase. I feel like it is a low stake intervention and I was impressed by the increased time to require treatment. Everything I read does not warm about overdosing vitamin D. We also can't forget the mental health benefits with vitamin D!

I am meeting with my hematologist/oncologist tomorrow. I was diagnosed one year ago just a random CBC. I spent time in the Gulf as a Navy Nurse so I am currently seeing the VA in Ann Arbor MI. I plan to request a referral outside the VA for a CLL specialist. As a nurse practitioner I have to advocate for myself like I would my patients! I know there are people with tons of experience and I really like to hear from them. The EGCG and Tumeric was mentioned by a person writing an article for the CLL society and I have reached out to him for an update since it was in 2016. To my surprise I got a great response full of information! So far my WBC is normal range as are all of my other labs, I just want to be proactive and know I did everything I could do about my situation. Thanks for your response!

Is your NP your primary provider? I am a Family Nurse Practitioner and when I got lab results it reassured me when my collaborating physician said "well if you're gonna get one it's a good one to get" I really try to keep that in mind! I spent time in the Gulf War and did see an outside hematologist/oncologist then completed all the necessary paperwork to apply for VA benefits since CLL is on the short list for service in the Middle East. I am going and have a long list of questions and requests, one being how can I see CLL specialist. I refuse to wait I firmly believe in making changes so I can do my best to delay and I feel I need a care team not just my PCP. It makes sense to just be reassured if nothing else!