CLL leukemia: Just diagnosed, what can be done?

Thanks for sharing this wonderful news. How much green tea extract and for how long did you take it? Would you mind sharing the brand and the amounts that you took? This is very helpful for the rest of us.

hi-
i started taking the green tea extract in june of 2016, after being diagnosed in april of that year- brand is ZenWise 725 mg,50% is EGCG ,which is 360 mg-i took between 20 and 30 capsules a day-7-10,000 mg. i now take approximately 5,000 mg per day . and this seems to be working to keep everything stable. hope this helps.
best to all,valerie

. thanks I will look into it, hoping to find an uncaffinated brand . Did you get your liver enzymes tested? A few people in the Mayo study dropped out due to elevated liver enzymes.

Im new to the group and just diagnosed about 2 weeks ago. I was caught completely off guard and didnt even ask any questions. I go back in a couple weeks for results on the last blood tests. Ill see where it goes from there. And I have lots of questions this time.

Definitely check out cllsociety.org website, join one of their regional support groups (now done via Zoom), and consult with a CLL EXPERT (not a generalist) at a cancer center like Mayo even if you are using a local hematologist/oncologist.

Hello,

I would like to discuss further and am very pleased w/ your results! I'm at work now,, so can't chat much & recently diagnosed, 8/22, stage "0", no symptoms, it was caught as WBC peaked at 19000, Hematologist Appt tomorrow. Eating Cabbage daily, 7,000 steps daily, trying to incorporate Tumeric/ Curcumin & Green Tea in diet, as bought EGCG sublingual and Tumeric supplements, (but doing a deep dive on research & would like, may not get Dr' blessings on taking). We'll talk. TY, and keep, keeping on......

Hi,

I just found this group and I like what I'm reading/seeing (as opposed to the International group, abbreviated as Health U.....) I'm new to this, (diagnosed 8/22, w & w, stage 0, and doing my best for right now by eating good & exercising daily. Would you please elaborate of getting connected with a CLL specialist, and how I would do that with Mayo Clinic? Previously I found that there's several CLL specialists in Texas, with the closest ones are in Dallas, (30 mi). Do most CLL patients have a regular hematologist / oncologist and also a CLL specialist? Thanks for the info...

Hi @skycountry, welcome to Mayo Connect. I’m happy you found us. We have quite a few members with CLL and they’ll be happy to offer their support and information. I’m guessing you’ve read through some of their stories already. CLL is generally slow to develop. People can go years without treatment.

If you’d like to request an appointment with one of the Mayo Clinic Campuses in Rochester, Phoenix or Jacksonville here is the link to contact the campus of your choice to initiate a visit. http://mayocl.in/1mtmR63

If you live in Texas and are near MD Anderson that would be another top tier cancer center you may want to try.

Most Hematologist/Oncologists are familiar with CLL and I’m not sure you need to have a another specialist. A hematologist oncologist is a specialist in blood cancers. There are some who do direct most of their research to the area. However, since this is slow to develop it gives you time to find a doctor you feel comfortable working with and trust.A second opinion is never a wasted trip.

How’s your current hematologist? Are you feeling satisfied or needing maybe a little more reassurance that you’re doing the right things at this time?

I can’t speak for “most” CLL patients. I use a specialist at Mayo exclusively for my blood issues. I’m sure many use a local hematologist and use a cancer center for a second opinion. To find experts go to cllsociety.org/newly-diagnosed/CLl-doctors/
There you can find all in your area. Specifically for Mayo, call 507-284-5363 or check Mayo website.

Thank you Lori. Good to know and I felt that way already about possibly not needing a specialist. I let the first Hematologist/Oncologist go after two visits and I got the diagnosis, because I really didn't like him and too gloom and doom. I do like my new doctor, as I selected one that was of Indian descent. I'm out walking the dog, so I'm going to run but didn't want to let too much time pass before replying. TY, ppl on this support site seem very down to earth and I like that. Last thing, your username makes me miss going up to see our land and friends in the Bitterroot Valley of Western Montana. One day I would love to visit the Mayo Clinic campus, as I was so impressed by watching that Netflix documentary on Mayo Clinic and all the history involved. Good stuff....