I have just been diagnosed with CLL, my count ... - CLL Support
I have just been diagnosed with CLL, my count is quite high. I am seeing the hematologist Monday. Is there ANY natural treatment at all ????
Hi Robert and welcome...
The treatment of CLL is changing rapidly, probably more than many cancers.
There have been a few small studies on things like green tea, gossypol, resveratrol from red wine grapes, silvesterol, PETEC, but they are really investigational...
An interesting tiny trial is about to open that looks if curcumin and VitD has any effect in CLL
clinicaltrials.gov/ct2/show...
To get your footing... may I recommend this free booklet. The first lesson... we are all different and CLL is incredibly complex...
lls.org/content/nationalcon...
Let us know your city and perhaps others can recommend a doctor well versed in CLL... many oncologist/haematologist aren't up to speed...
~chris
How high exactly is quite high? While B-lymphocyte numbers with CLL can climb to several hundred times normal levels, the cells are small and very rarely cause problems. If you haven't already done so, read my pinned post "How high can you go...."
With regard to natural treatments, B-Lymphocytes are very fragile outside of the body and not that hard to kill in the blood. There are any number of substances that will kill them in a test tube; getting a high enough concentration of these substances into the blood without them causing collateral damage is the issue.
You really need to consider any natural treatment as a 'poor man's cell's and expect side effects along with the complication that dosage of the active ingredient is not well controlled.
The most well known natural treatment for CLL is the polyphenol/catechin EGCG from green tea. A Mayo Clinic run Phase II study showed that a commercially prepared EGCG extract called 'Polyphenol-E', reduced lymphocyte counts and lymph node sizes in most patients and was well tolerated. This preparation is no longer available, unfortunately. You may get the same effect with high concentration green tea capsules, but you will also get high levels of caffeine and more importantly, possibly pesticides, heavy metals and who knows what else. You may wish to take that risk - it certainly can make you feel more in charge compared to just accepting a do nothing Watch and Wait, but if you do, you owe it to yourself to inform your doctor and specialist.
Improving your fitness and losing weight if necessary can also improve your quality of life and make chemotherapy treatment, if it comes to you, easier to get through.
Neil
Hi Neil,
Sure EGCG is available: refresh-teacaps.nl. I am using it three times a day during ten years of CLL. Just begun with Chl+R after all that time. Does EGCG helped???I don't know, but...???
emen
If you are on treatment you should discuss ALL the kinds of supplements you are taking with your doctors. Even simple things like grapefruit juice, Seville oranges and St. John's Wort can interact with some types of oral chemo immunotherapy...
Talk to your doctor...
Hi Sorry that you have joined the club the none want to be in. However there is currently no cure for cll but don't get too depressed because while on Watch and Wait (W & W) you can educate yourself about the disease. While no cure there are many treatments some of the very new ones do not involve chemo. Many live for years ( I know someone who has had cll for 12 yrs and has yet to need any treatment at all) before treatment and with the help of a specialist ( and when you first get the disagnoses (DX) its helpful to see a specialist) the future can look bright instead of the cloud of darkness which you may feel right now. The best advice I can give is stay on this site as you will get to "talk" to others in the sames boat as yourself. Good luck.
Thank you so much for your support.
Hi Robert
We all have our pet theories and that's a good thing because introducing a positive mental attitude can only help as it has been shown to boost the immune system. When I was first diagnosed i needed to inform my siblings for business reasons if nothing else and my elder brother who lives in Indonesia mentioned my plight to his Chinese staff who put the word around their community, the Chinese have a well established knowledge of alternative medicine. Soon a report came back of a woman with a WBC of 200 who was told to drink Red Palm Oil, in six months it had dropped to 100 and after a year it was back to normal and has remained so since. I decided to try it and my count started to drop but there are missing facts, did I believe and then benefitted and did the woman have CLL causing her high white count or was it something else!!
However, whatever the truth of the matter, the brain plays an important part in curing illnesses, any doctor will tell that patients who think positively recover far more quickly than those with a negative attitude.
