Hi I'm 44 recently diagnosed with CLL, this is my first time posting.
I've heard that Green tea extract is very helpful, however I suffer from insomnia and both the decaf and regular green tea make my heart pound and I can't sleep. Does anybody have advice around this?
Also are there other supplements/ vitamins I should be taking?
Any advice would be so appreciated. I was diagnosed right before Christmas this year and feel alone and anxious. This community seems very supportive, so I'm thankful in advance. I'm a mom of two in Minnesota....
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Elizabekro6
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I recommend you get refered to the Mayo Clinic in Rochester. They ran the green tea study, but Dr. Kay, does not recommend the use of OTC extracts etc, because nobody knows what is really in them and doses vary tremendously.
The Mayo also did a study that showed CLL patients under the care of expert doctors do better and live longer, so your doctor's expertise matters and the Mayo has a world class CLL program.
You came to the right place. There are so many helpful and supportive people on this site. I was diagnosed at 55 when my youngest child was 13. They think I may have had it for years, so I feel for your concern about your children. Even my older children still really need me. So yes, I have to force myself to stop thinking about what they would do without my help. I even wonder how my husband will find the passwords to all of the online banking and other sites! So you are not alone in feeling worried and feeling alone.
However everyone on this website will give you lots of encouragement if you reach out. sometimes just reading the kind words that others write for other people is comforting.
So keep posting your questions and also the details of your diagnosis if you know them.
As far as the green tea, there are different opinions on this so search it in the search space at the top of this page. I was taking the supplement but decided not to continue. You might need to take a sleeping pill at night or a sedative because the anxiety over this can really keep your mind thinking all night and you need to sleep for your health and to take care of your family. God bless you.
Hi Elizabeth, Hi too had heard there may be benefits from supplements and have been curious enough to 'give it a whirl' It seems the trials involved 4000 mg green tea a day, also sourced information that involved taking Curacumin (1000mg) 2 days a week and green tea 5 days. Also taking vitamin C (2000mg) and Omega 3 (2000mg) daily. Next bllods will be April by then I will have taken these supplements for 5 months so will see if any effect. of course thise will not directly prove anything. No adverse reactions so far.
Thanks so much for sharing your knowledge!!!! My mother was diagnosed with CLL and we are absolutely overwhelmed...
Your post seems so positive and full of hope!!! Just wanted to ask you: How do you feel now, after 2 years since you started that Green Tea and Curcumin treatment?
My mother wasn't given any treatment.
Her blood count is 25.000 L representing 75% of her blood.
Thanks Souriez. We after six years, just started treatment on ibrutinib. Still feeling goos and positive! Just chaired the London conference of the CLLSA yesterday and felt it went well. Two delightful members shared their CLL stories which focussed on living life to the full and not letting CLL take over you life. They finished by playing what a wonderful world... and it is. So we have CLL, we must take care but it does not mean we should not live each day to the full. Good luck, have fun with mum!
Are there other supplements/ vitamins I should be taking? ... that's a hard one to answer.
How is your general health ? ... how aggressive is your CLL etc ... it's not something I think that is easily generalised.
For the record here is my experience ... with my CLL ... and suppliments and diet.
Milk Thistle 3000mg - 7 Days a week
Vitamen D3 5000IU - 7 Days a week
Garlic 5000 mg - Monday to Friday
Green Tea 1000 mg - Monday to Friday
Cod Liver Oil 1000 mg - 3 Days a week
Omega 3 1000 mg - Twice per week
Rosehip - Twice per week
Elderberry Extract 150 mg - Sat/Sunday
Zinc 15mg - Sat/Sunday
I took Chris ( CLLCanada,s ) advice ... I let my GP know about my suppliments, and I get my levels + liver functions checked out annually.
My diet is at Noon - a small bowl of porridge and then ... a small bowl of - fruit of the forrest berries with a little dried fruit ( to make the texture chewy ) ... a little Bran ( fibre/crunchy ) - mixed seeds/nuts - topped with a yoghurt.
At 6pm ... Soup or fish with vegetables followed by fruit/yoghurt etc - 2 or 3 days a week, other days whatever I fancy ... though I eat little red meat.
I drink little and don't smoke ... unfortunately I can exercise little due to other illnesses.
I was diagnosed with CLL in 2006 aged 47.
However ... your CLL is unique to your body ... how I try to manage with mine is unique to me ... To make any sense to those who have been recently diagnosed with CLL ... there would need to be a survey with the thousands of members on here to see if there is any common dietary/supplimentary denominators ... even then, it would have to be extensively tested with the likely result being inconclusive.
I suppose the best advice is to eat a healthy diet and exercise ... but we've always know that anyway ... even if we have been ignoring it for the last forty odd years.
Hi and welcome from another Mom of 2!! My boys are 7 and 4 now, I was diagnosed 2 years ago aged 37. Sucks, doesn't it? Scary. But the mental anguish gets better with time I find and I know everyone here will agree.
Lucky you being near Mayo Clinic! You're sure to be well looked after.
I take lots of supplements but as others have alluded to I definitely think we are all different and it's important to get vitamin, mineral, enzyme, hormone health tested before embarking on a course of supplements. I wholly recommend visiting a functional medicine doctor who will arrange these tests and help you tailor your diet and supplements depending on your individual results. I've found this to be so helpful with how I feel physically. I see a counselor who really helps with how I feel mentally. And of course the good folks here are amazing for info and empathy.
Diagnosis is shocking. I'm sorry about that! 10 years on myself now 48. Drink water. Eat well and don't take vitamins unless your CLL doctor tells you to. You're almost certainly wasting your money. I expect insomnia is related to anxiety. Can you get some counselling? All the best.
There was one video with Dr. Neil Kay where at the end he turns to the camera and recommends newly diagnosed CLL patients consume Green Tea or (ECGC). I can’t find it.
He turned and looked into the camera and said to take this for your CLL.
So I take it, 4 capsules every other day. Not anywhere near to the amounts studied by Mayo in clinical trial. Also I take 750 mg Curcumin days in between, alternating days.
I purchase Teavigo from Healthy Origins 150 mg 60 capsules. Get it from Amazon. I purchase CuraMed (Terry Naturally) 750mg 120 Softgels. Also from Amazon.
For simplicity I would rather not take either, instead I would rather just consume 4 half liter water bottles a day. But since it is only a matter of spending money, I spend it and take them.
I also take Vit D, but reduced from 1000IU to 400IU, because It might be reason for some of my heart palpitations. With the Vitamin D one might need to take Magnesium. See this link:
I TOO HAVE TROUBLE SLEEPING….. THIS DISCUSSION MAKES ME WONDER IF IT IS FROM THIS SUPPLEMENTATION. BUT TOO NERVIOUS TO STOP THIS SUPPLEMENTATION FOR OBVIOUS REASONS.
Hi Souriez, To answer your question on "How do I feel now"..... I feel good. My Lymphocytes continue to increase despite the EGCG or Curcumin (75K). In fact I am less consistent in taking them now. I moved to Florida since making the above response, and I am outside exercising a lot, and I think that makes me feel good. It fights the tiredness I get from having CLL. There is no doubt that someday in the future I will need to rely on Imbruvica or Venetoclax for first treatment, but I don't think about that as much. It helps me cope better not to think about it, but with new drugs available that helps me cope as well.... Best Wishes Tom..... tekusa
Thank you so much for your answer + GREAT TO HEAR YOU FEEL GOOD!!!!
I watched this on youtube- a German researcher presents his findings on CLL. I didn't understand too much, but I'd really like to get in touch with him. Let's see if I manage
Dr. Michael Hallek- Univ of Cologne- Germany.
The youtube interview is entitled
"Is CLL curable today? "
Don't know why, but I couldn't paste the l I'm nk here. Anyway, you can find it after its title.
Hi Souriez, I didn't see the video. I got some type of error.
There are folks on this Forum that are more up to date on the CLL situation today then I am. It has gotten much better with small molecule inhibitors. And I for one am relying on that for my first treatment.
My Mom nearly succumbed to CLL but Ibrutinib saved her 2014 timeframe. She is 80 years old. If you ask her she thinks she is cured. But takes Ibrutinib every day.
Regarding deletions and cure. Some were treated with FCR (chemoimmunotherapy) in the past and have not seen their CLL come back. But I am guessing they get blood test performed every 3 to 6 months for life to be sure it hasn't come back.
New drug combinations like Ibrutinib and venetoclax (taken together) can get you to what some may call cured. (MRD negative) but I think you will get blood tested the rest of your life despite being MRD negative.
The basics from this site still apply and are easy to understand. But treatments are better then when this website was created so you next should go to...
These studies were done a few years before the discouvery of clonal evolution in CLL... picking off the low hanging B cells may make way for more aggressive subclones to emerge...
Until there is further study on this , the jury is still out on whether early use of substances like EGCG is actually advancing clonal evolution and making CLL ultimately worse...
Hopefully research will consider a study on this...
I eat well and try to exercise by walking everyday... supplement with VitD3, a one a day with magnesium, and monthly B12 injection...
Back in the day I had access to PolyphenonE used in the Mayo study, I and others funded, but there was some indication it might be effecting my liver, when combined with Merlot cure... shortly after this, it was removed from the market by Health Canada.. so that settle my dilemma...
How Much VitD3, do you take and how much Magnesium? Also why do you take injection of B12 instead of tablets? I was tested for both and am in range. Test was performed July 2015 though. I think I am in a bit of a spiral with my supplementation.
I take 2000 IU of D3 daily, have for 60 years... B12... pills don't work for me... I have no intrinsic factor, IF... which is needed for B12 uptake from food... sublingual B12 don’t provide enough, so monthly injection to counter my pernicious anemia, which was masked by CLL.
Magnesium, Calcium, Zinc 333mg, 166mg, 16mg
Anyone changing to a very high vegetable or vegan diet needs to have B12 and folate levels checked...
Thanks Chris..... Just got back from walking the dogs, but opened the computer immediately to see your reply. I appreciate your information. I place a lot of value on personal experiences!
I went to Tampa in December and spent the week in sunshine (not a strong sunshine that week). I skipped supplementation and bicycled full days for 5 days straight. I felt great. So I think my vitamin use is messed up.
I like yours since Mag and Calcium work with the D3 for my heart, and Zinc for the prostate. My wife is an advocate for the B12, largely because she drinks wine almost daily. I try my best to avoid the wine but it is not easy. Maybe I add B12.
For me that means deleting the: Multivitamin, ECGC, Curcumin, Fish Oil. Keep the D3 and Magnesium. Then add the B12, Calcium, and Zinc. I hear you can overdo Calcium though. Is that why you use a low dose of this supplement?
As you can see from the responses here, there is no recommended supplementation, other than what your doctor recommends based on testing and other factors specific to you. If the green tea bothers you there is no reason to feel like you need to continue it. You might ask your primary whether a calcium magnesium supplement is advisable for bone health. My eye specialist recommends PreserVision - AREDS 2 because of a family history of macular degeneration. Make sure that all of your doctors are aware of everything, including over the counter, that you are taking. My eye doctor suggested fish oil for my dry eye. my hematologist said no because of the possible effect on platelets. The one thing everyone agrees on is that we need a healthy diet and exercise. I think we do better concentrating on what to eliminate or cut back on (eg. sodas, fast food, alcohol, etc.) rather than on what to add.
Please ask your hematologist/oncologist before taking any prescription, over-the-counter vitamin/mineral, or herbal remedies. While on cancer treatment some of these ingredients adversely interact with your cancer treatment. You can read about green tea extract at webmd.com/vitamins-suppleme... Be syre tio read the sections on side effects and interactions.
When I was DX in 2006 and was told to W&W. I could not accept doing nothing. I waited for six months to gage CLL progression while studying alternative methods to attack my CLL. I decided to purchase the best quality green tea extract (EGCG- EpiGalloCatechinGallate) from a Japanese mgf. Mitsui Norin. The short story is I began with sublingual lozenges to increase blood up take of the EGCG at ~.25 of a gram and escalated dose to 1.25grams over a period of 8months graphing the ALC (Absolute Lymphocyte Count). Any one or two data reference points were deceptively encouraging until I averaged out the curve of ALC progression over time.
Dr. Kanti Rai of CLL fame, in my only consultation with him, joked that it appeared that my CLL was using EGCG as fuel to grow. While this is not to discourage anyone from trying something like EGCG, for I have no doubt it "works" somewhat in some people, everyone needs to be aware that EGCG is considered a toxin by the liver which tries to remove it from the body. This is part of the dilemma of getting enough into the blood to do any good. At 1.25 grams I developed a pain in the area of the liver and simultaneously saw a rise in my liver enzyme numbers on my CMP (Comprehensive Metabolic Panel) so look at your AST & ALT. This monitoring may be more important for those whose CLL affects the liver. With me, my CLL went for the kidneys and I have never had a problem with my liver except when escalating EGCG consumption. When pain and high liver enzymes came along I abandoned EGCG and saw an immediate return to normal, both with liver numbers and no pain. We are all different.
Read Chaya Venkat at clltopics.org on green tea I think under "phytochemicals" as there are a number of articles. Be aware of Mayo Clinic findings that using EGCG and Curcumin can work against one another if used simultaneously.
The one vitamin everyone should have checked out through a 25 hydroxy test is Vit. D3. There is some difference of opinion as to optimal blood levels but any number below 30 should be supplemented through consultation with your doctor. Northern Europe, Canada and Northern states of the USA have large numbers of people deficient in Vit. D3.
Hi Wayne, How much Vitamin D3 do you take a day or week. Also I have developed PVCs of the heart. This is a new development. 2 months ago. My Dad has this too. But after taking Vitamin D3 I notice some heavy heart beats and Flip Flop in my chest. So now I take Carvedilol 3.25 mg to reduce this and to treat my Normal but low Ejection Fraction 56%. This made me introduce Magnesium to the Vitamin D3 supplementation. I think I am in a bit of a spiral with my supplementation.
I take a varied amount depending on amount of sun I get so in the late Fall through early Spring I take 2000iu and this keeps my numbers between 50ng/ml and 70ng/ml (US measurement) In the summer I may take 1000iu but many times nothing. This regimen followed 3 or 4 years of covering up rarely getting any sun as precaution after chemo and excision of SCC (Squamous Cell Carcinoma) in 2010.
Some say stay out of the sun all together but I "need" sun and feel better for getting it in moderation plus I am outside much of my life with sports and work. Chief considerations for sun exposure will vary for each of us but based largely on treatment status and immune function; mainly concerning 11q- and 17p- profiles that are likely to have damaged tumor suppressor genes ATM & TP53 respectively.
Bottomline: Aim for what you or your doctor believe is an optimum number and base dosing on what your 25 hydroxy test reveals. Don't go arbitrary based on what I take or anyone else.
Vitamin D3 and its effect on your heart issues is probably not as important as other underlying causes such as low heart rate (bradycardia) or other cause you need to have medical help understanding.
Here is a good website for understanding the numbers that will work for US and other countries. vitamindcouncil.org/i-teste...
Nice article I like it!! I saved it for future reference, THANKS! I was in the process of reconsidering my Vitamin regimen. This timely correspondence by Elizabekro6 gave me venue to discuss it with others. I considered people like Chris and Yourself to be more seasoned in this regard then myself. But today I made a decision on my path forward. It is to take the following supplements. (If you have recommendation other wise please say so........)
1) Centrum Silver Men 50+ Multivitamin
2) Nature Made Magnesium 250 mg (I might use different brand but don't fully understand the differences in Magnesium tablets).
3) Nature Made D3 400 IU.
In April (my next PCP visit) I will ask for 25 hydroxy test, and see where I am on levels. This will be the first time I tried a plan like this. A good experiment for winter Vit D levels. Maybe next year 400 IU will need to be increased to 1000 IU.
Like you, I need sun too. I am retired now but I exercise most every day (go planet fitness!), and love bicycling and walking. My wife is with me every step and no doubt will breach 100 years old before she slows down. Her parents did, why not her!
When I travel by plane I bag up my Brompton and spend 3 to 4 hours outdoors covering distances of 25 to 40 miles (not very fast I know, but it is a folding bicycle). My arms and neck need sunscreen the most. But I don't overdo it.
Hopefully this doesn't bite me in the Arse at some older age. I do see a dermatologist as suggested by Dr. Byrds office. So far so good with the dermatologist.
I know you have experiences with Heart Issues.... A-Fib. My issue is Premature Ventricular Contractions (PVC). And the cardiologist said no more alcohol and to take carvedilol at 3.125 mg twice daily. This drug over time may reduce PVCs and increase Ejection Fraction higher than 56%.
The folks at NIH (Dr. Ahn) pushed me in the direction of seeing a Cardiologist. Their examination uncovered a small but noticeable irregularity that put me on the path to the cardiologist. My PCP felt the PVC was nothing to worry about, but cardiologist said to take carvedilol and stop drinking alcohol. I didn't quite stop the beer drinking, but I am much less than before, and am working on total abstinence. Best wishes to you Wayne and thank you for your observations and information. Highest Regards.... Tom
Earlier in the year I started taking 300mg of garlic per day. Very soon my nodes shrank and my blood work improved greatly.
My wbc is now 11.1 and my ALC Is 6.
Prior to this my wbc had been hovering between 50 and 70.
I don't have proof that the improvement is related to the garlic but within days of taking it my nodes started to shrink and it was the only change I had made to my lifestyle.
Per your interest in green tea options see the types shown below.
Make sure to get your liver panel every 4- 6 weeks to make sure there are no problems. (AST, ALT). Combining with Curcumin cause my AST to go way high. I would just to Green tea only. I alternated days.
Please read the Mayo clinic phase 2 study paper as well.
Healthy origins Teavigo green tea supplements have the most ECGG with no caffeine for the best price. Teavigo is also made by another but is much more expensive. They can give you a report from a independent lab verifying there results. The actual Teavigo powder is made by a Japanese company in Japan.
The Now brand is the best value. It has 200 mg of ECGC see but 4 mg of caffeine. I would take 2000 MG (10 pills ) of the Now brand in the morning and then about 1500 mg ( 10 pills ) the Teavigo go in the early afternoon. Papers have shown one gets the most amount of ECGC if you take it on a empty stomach but in the clinical trials the stop that for possible stomach problems.
I would also drink about 6 cups of strong green tea a day to give an additional 500 mg of ECGC. Surprisingly the basic Lipton and even the Decaffeinated Bigelow tea had a fair amount of ECGC see at about 80 mg a cup. I happen to really like the Rishi super match brand from a flavor standpoint. It said in the consumerlab.com report that the nylon tea bags takes out part of the ECGC. I also drink it from Raw tea so the nylon bag is not involved. I just use a loose tea holder. You can buy it in raw form as well. Pure Matcha Green tea is good but I get tired of it after a while. Depending how strong your tea is it can give somewhere between 60 to 120 mg of ECGC.
I founds these through the consumerlab.com website that I joined. It cost about $40 per year but they have a very good articles on all supplements.
I would also taking high-dose ECGC with Curcumin every other day but that increased my ALT liver panel so I stopped. The paper from the Mayo clinic on combining it is only done in vitro - in a lab. So I would stick with green tea only.
In the Mayo clinic paper the people got good results over all although 4 eventually had to get treatment per the paper. The green tea seem to help for my CLL but unfortunately I have a very strong version. 17P deleted. I have trisomy 12 as well. It gave me more energy as well.
I was diagnosed a year ago but will started treatment last week. I am on a targeted therapy clinical trial combining Ibruvica and Veneticlax. My WBC counts have rose from about 10 to 90 over the last year. I have a rather large swollen lymph nodes as well.
After 1 week the Ibruvica has brought my lyphm nodes down 80%.
So far no major side effects.
If you can hold off therapy with Decaffinated ECGC that would be great. It seems to work on easier types of CLL,
Hi Elizabekro6, I'm a 46 year old mum and was diagnosed 3 months ago. I have 2 children age 11 and 14 so I understand how you are feeling. Since being diagnosed I have 2 small cups of organic green tea a day, and lots of organic spinach, watercress, spinach, beetroot, goji berries etc. My lymphocyte count has gone from 5.72 to 2.53, I've got much more energy and my night sweats have stopped, so I'm telling myself its the new diet! Just large lymph nodes that I need to stop aching now!
Having a spoonful of turmeric in hot milk in the evening may help you sleep at night. Have the green tea (organic, Matcha) in the mornings.
I’m googling and reading many suggested sources. It’s enlightening and encouraging. We, the patients, must own this and discover what is suggested and share with our doctors.
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