Hi folks - I've just been diagnosed though I think it's been going awhile - I'm 70 living in the wilds of Brittany and am trying to work out a regime which might deal with the problem naturally before I get sucked into pharma world. So far I've settled on raw garlic (just as well I'm on my own !) - milk thistle and CBD oil ( would prefer the THC) but not readily available here in France.
I'm not a great one for regimes - but could probably handle one more thing a day on a regular basis, any suggestions on something which might not conflict with the above ? My current blood test reading was 171 with creatinine a bit high.
good luck to you all - john
Written by
John-Searle
To view profiles and participate in discussions please or .
EGCG in green tea made by Mitsui Norin of Japan was shown to have a treatment effect in early stage CLL, however it is not commercial available and over the counter products vary tremendously in quality and dose...
However, some patients in early stage feel it might help, although the over the counter approach is not recommended but the Mayo doctors, due to problems mentioned previously.
You specifically ask for suggestions "which might not conflict the above", which leads me to ask why you think any of the above are going to be active against your CLL? Garlic at least gets a mention in this 2011 paper hematologyandoncology.net/f... , and there has been some research on the effectiveness of a compound from garlic chemically bound with Rituximab against CLL published. But I'm not aware of any reputable research on the other substances you mentioned specific to CLL. We know from trials that substances active against other B - Lymphocyte cancers don't necessarily work well against CLL, let alone substances known to be active against other cancers.
EGCG at least got to the point of a successful phase II trial, though as Chris notes, finding a reliable supplier is difficult.
Thanks for the advice Neil and Chris - I'll definitely sacrifice my Yorkshire for the green tea if I can find a good source around here. Guess I have been approaching this instinctively rather than research based. Got a lot of reading to do !
None of that "natural" approach will influence the direction your CLL is going to take. If you think it is happening, it's a coincidence. CLL has a mind of its own. Get comfortable with this fact & you can have far less anxiety.
For Green Tea I have found the Healthy Origins Teavgo brand to be best for ECGG. It is a lot of pills a day though. They will send you a report from an independent lab if you call them. Consumer Labs also gave them good reviews. I called Healthy Origins and they get the Teavago powder from Japan. It's important to read the papers from the Mayo clinic and work with a Doctor and get liver test done to make sure you are responding OK and your AST and ALT are good. The phase 2 study from the mayo clinic is best .
Full disclosure I am 17 P delete it and the high dose EGCG did not work for me in time I had and I need it to start treatment.
I am on a clinical trial with imbruvica and Venetoclax and doing well so far.
Note the comments from the Mayo Clinic specialists in the ASCO release: 'Drs. Shanafelt and Kay caution that EGCG is not a substitute for chemotherapy. All of the patients Mayo tested with EGCG were early stage, asymptomatic CLL patients who would not otherwise be treated until their disease progressed.' Seven years on with new, arguably more effective and less toxic, non-chemo drugs, CLL specialists still consider watch and wait is the best strategy.
Thanks for the info Hoffy - I think I am late stage as the French docs want to start me off on six months of chemo beginning next month - I'll ask them about clinical trials. Never been sick in my life before and thoroughly resent being sucked into all this !
Sorry to hear that. Are targeted therapies an option? Imbruvica ? Venetoclax ? UC San Diego and many others avoid FCR or BR unless the patient really wants it.
Out of the USA it can be hard to get targeted treatment though.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Need advice on what might be causing this
Advice on moving area to Nottingham
Starting Acalabrutinib, advice and what to expect?
Advice re exercise and cold showers.
