Chronic Lymphocytic Leukemia: Anyone else in remission?

Justin thank u for the info on green tea extract research. The exact info I read , I am just not well learned in computer copying & sending. We will ask our hematologist for his opinion. Wonder where I could find locate them, maybe a health & v itamin sstore. My husband & I are 71 , we live in Michigan. Thank you for replying . Too funny my husband said he just found them available at Walmart on the computer. Take care,Mumzie

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I am so happy to hear this, I believe others are in remission. I have been on the watch n wait program since 2013...
Today I have an appointment with my oncologist, hopefully I will continue with this even though my WBC count has been going up.
Take care,
Cindy

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@mumzie, your post inspired me to do some quick searching about green tea extract for CLL patients, and the early research is promising on its ability to kill leukemia cancer cells. Here are a few resources that I found on this topic after you brought it to attention to the community:

- https://newsnetwork.mayoclinic.org/discussion/green-tea-extract-appears-to-keep-cancer-in-check-in-majority-of-cll-patients/
- https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/diagnosis-treatment/drc-20352433

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I see where back in 2010, a Mayo physician reported that "green tea extract keeps cancer in check in the majority of CLL patients."

I read it. A doctor said that it is not a replacement for chemotherapy. And it ends with “Without a phase III clinical trial, we cannot make a recommendation that EGCG be used by CLL patients." And a couple of years later I read that EGCG
can cause transminitis (elevated liver levels).

So what happened in the phase III clinical trial? Thanks.

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I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn't be CLL related, because you don't see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.

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It appears that the promise was not fulfilled, and perhaps later clinical phases were dropped. Here is an article from the NIH from 2018, stating that the efficacy was not proven in multiple small trials, and there were a number of side effects. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7397615/
Does this help answer your question?
Sue

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