CLL - newly diagnosed

I was diagnosed with CLL in October 2017 with WBC of 32,000 and lower platelet counts. My WBC/platelet counts have been going up and down with every monthly check. My spleen is enlarged and am looking at possible treatment in the near future. Since diagnosis, I have made changes in diet, along with taking turmeric/green tea supplement Protandim daily, drinking green tea daily and eating blueberries daily. I do not know of effects of these natural health changes as of yet. Any recommendations on treatments? Natural health success stories?

@dougmann

I'm an Australian male aged 69 and live in Queensland Australia.

I was diagnosed with CLL in April 2015 although my white cell count had been just over and just under the Ref Range limit for 18 months prior to that. My GP referred me to a haematologist at The Mater Cancer Care Centre in Brisbane our state capital. He ordered scans, blood tests and a bone marrow biopsy (ouch) which proved the diagnosis.

After a visit to him in August 2015 he authorised my GP to monitor my Full Blood Count blood tests quarterly until the lymphocyte level got to 20. Obviously the Ref. Range in Australia is done differently to the USA. The lymphocyte range here is 1.0-4.0 and the WCC range is 4.0-11.0. Don't know what it means but in both cases the 'Units' are x10^9/L.

My lymphocyte levels have slowly increased over time until 1 November just gone. For instance this year three monthly from January they were 13.08, 13.62, 15.83 and then bang.....jumped to 19.56 which is almost the threshold that the haematologist has allowed my GP to monitor me. She rang me and suggested I have another blood test in early December which would surely put me over the magic 20.

I started to get a little concerned and decided to do an internet search for 'Symptoms of CLL'. Amongst the suggested web sites was Mayo Clinic which I knew to be a respected organisation. I ticked a few boxes with the suggested symptoms and continued reading through treatments to alternative treatments. An extract from green tea, EGCG, has shown promise in killing CLL cells in initial clinical trials so I thought I'd give it a go. I ordered 600mg EGCG capsules and started having one of a morning and one of an evening from about two weeks before a blood test on 6 December. Miraculously the Lymphocyte result dropped from 19.56 on 1 November to 16.40 on 6 December. The reading had never gone down since diagnosis. I told my GP what I was taking and she said 'keep taking them!'. Looking forward to my next quarterly test to see if really is helping.

Hi，stuartg！I saw your reply and am delighted to hear that you've experienced significant relief from taking EGCG. It is now June 2024, how are you doing?

I am still taking the EGCG, but 2 or 3 years ago increased the dose to 3 x 600mg capsules morning and night after reading somewhere that the dose I was taking wasn't the recommended dose.

My lymphocytes bounced around each quarterly blood test but went down more than up.

Last test in April the lymphocytes were down to about 9.5.

Unfortunately the fatigue is getting worse despite the lymphocytes going down. Maybe something else is causing it?

Wow, I'm so glad to hear from you so soon with your latest news. Thank you!

The lymphocyte count dropping to 9.5 is a very good sign. If you're getting plenty of rest every day but still feel increasingly tired, that could be a concern, as one of the symptoms of CLL is causing physical fatigue.

I've been through something similar. In my most recent test, there was a noticeable increase in my lymphocytes, which worries me. At the same time, I'm taking EGCG capsules (NOW、 Life Extension), taking 3*200mg of EGCG daily. I'd like to hear your advice—am I taking too small a dose?

I suggest you google how much you should take. A high dose such as I take supposedly can cause liver damage. To date I don't have a liver problem. I wish I could remember the link to the article that I got the info from where I learnt how much to take but unfortunately I didn't take note of it.

I am still taking the EGCG, but 2 or 3 years ago increased the dose to 3 x 600mg capsules morning and night after reading somewhere that the dose I was taking wasn't the recommended dose.

My lymphocytes bounced around each quarterly blood test but went down more than up.

Last test in April the lymphocytes were down to about 9.5.

Unfortunately the fatigue is getting worse despite the lymphocytes going down. Maybe something else is causing it?