Hi ,I'm very new to CLL only just diagnosed wh... - CLL Support
Hi ,I'm very new to CLL only just diagnosed while being tested for diabetes , can anyone tell me if drinking green tea is of any Benefit ?
Welcome... last place on earth you want to find yourself, but many great people here!
It may help a bit...in high enough doses.. but you should have your liver function monitored by your doctor... about every 3 months if you try this.
Generally you would need 15 cups of carefully brewed green tea a day... EGCG is
quite heat sensitive.
Capsules are not recommended ... because quality varies widely and Chinese Green tea has been found to have high quantities of pesticides..
greenpeace.org/eastasia/Glo...
More trouble than benefit in my view...
~chris
Hi Pixie, I'm sorry you had to join this site, but a warm welcome to you anyway. Other people can tell you more about green tea (such as Chris who's already replied), but I just wanted to welcome you and let you know that you'll find a lot of useful information and helpful people here. So feel free to ask more questions, browse old posts, look up links etc. This site has been a lifeline to me, and to many other people.
Paula
Hi Pixie
I was Diagnosed with CLL last year and my consultant told me I was not to have any supplements or herbal teas also yogurts with that probiotic stuff in them (live cultures) and soft cheeses was a no no to. Apparantly they can affect the blood results.
Good Luck
John
Yes, so is cutting out suger, carbo hydrates and prcessed foods and praying in my experience, I was diagnosed over two years ago and my records show that I had it 4 years ago, hopefully my next check up will get me discharged from Hospital . Also you tube on cancer and Vegans is encouraging. We are being poisoned in our food. 1 in 3 people are getting cancer now. The Lymphona association are helpful.Where abouts in the country are you? Martin
Hi Martin thanks so much for valuable information I'm living in Ascot in Berks ,not too impressed with my consultant I'm hoping to move to another consultant a little nearer to home
That might be more forthcoming with information
Many thanks may u stay well and happy
Pixie
CLL is a rare cancer, not many expert doctors. If you are considering switching doctors find one knowedgeable in CLL. They tend to be in major research hospitals like Barts, Royal Marsden, Leeds, Southampton, Cardiff... and others...
Thank you, I have a God Daughter near Reading, may be we could meet one day, meanwhile if I can be any further help please let me know,Martin
Hi Pixie
Welcome to the forum no one wants to join. What a familiar story, I was diagnosed a year ago while being tested for blood sugar levels, a routine one as my doc said they hadn't taken one for over a year.
An alert bod in the lab noticed and referred the results to the duty Haematologist who said it looked suspiciously like CLL and asked for me to be referred. the rest is history Luckily my bloods are very stable and my life is relatively normal and long may it stay that way.
There are lots of people on here who will help and tons of advice, its a very friendly community and we always welcome new people so I would read up as much as you can handle and ask your questions here, don't be afraid to let go with your frustrations as well, we all let off steam at times and people here are used to it.
Kirk
Even though when diagnosed nearly 7 years ago as stage four, I was put on W and W by NHS in the UK. I was fortunate that my family sent me to the states to see a top specialist as they felt the NHS was just not prepared to spend any money on a woman in her 50s in the UK. However he agreed with the treatment and when asked what I could do diet and lifestyle wise to keep me healthy, his only suggestion was to drink green tea and live as healthy a lifestyle as possible. I am still here and not being treated and people always tell me how well I look and I drink 6 to 7 mugs of green tea a day and love it! I used to be a big coffee drinker and now don't even like the smell. So many friends, members of my family and work colleagues now also drink lots of green tea when they see how well I have been. I would say the first one to 2 years after diagnosis are the worst in that you worry about everything and what might happen, but my best recommendation is to carry on working, as I have done, so that life is completely normal and don't dwell on the various symptoms.
Try as I might, I hate green tea!
Apparently I've had cll for about10 years but was diagnosed less than 5 years ago. Am half-way through treatment now. Like John, I was advised not to eat yoghurt, soft cheese, blue cheeses and several other food stuffs and also not to take supplements. However, doctors never mentioned nutrition until immediately prior to chemo.
Fortunately I do have a fairly healthy diet (despite daily chocolate fix - is that a woman thing ?!)
I find each time I weaken and eat chocolate my Lymph glands swell in my arm pit.
I think the chocolate fix thing is fairly universal. I've never been much into sweets - binge a few times a year and that holds me - but my male teaching partner was a total chocoholic. He would bring his bag of chocolates through the adjoining door to my room and tell me to hide it and only let him have one piece a day. We had a lot of fun with that, as the kids in both rooms, any time he crossed the doorway, would warn me that he was there to be sure that the chocolate was hidden.
Hi Pixie,
Welcome. I may confuse you a little bit as my response is different than may others who replied. I am currently under the care of a doctor that this cite refers to as the Godfather of CLL, Dr, Kanti Rai, at Long Island Jewish Hospital in New Hyde Park, New York, USA. I am at Stage 0 . Prior to seeing Dr. Rai, I was seeing another hematologist from the very reputable cancer hospital, Memorial Sloan Kettering in New York. He had me immediately start taking green tea supplements; EGCG 350 mg. daily, sourcenaturals.com/prod...
and Maitake Mushroom Supplement; mushroomwisdom.com/prod... (I only take 2 per day, one at breakfast and one before bed for a total of 300 mg.) You can shop on the Internet for better prices. Since taking these my levels have improved consecutively for 2 six month visits. I also take 2000 Vitamin D daily, split between morning and bed. Dr. Rai agrees with the other doctor and has me taking both the Green tea and Maitake Mushroom Supplement. They both said that it would be impossible to gain any benefit from drinking the tea or eating the mushrooms as they would not provide the amount needed.
I was diagnosed in June 2012 at the age of 53. I found this site to be very friendly and informative. My only suggestion is to use it to glean information and then, speak with your oncologist about any suggestions you are considering. I found Dr. Rai, from this site and being that he is top in the field of CLL, I made a decision to trust what he says. Find a doctor you feel comfortable with (if you haven't found one yet) and put your trust in him or her.
Keep well!
Laurie
Laurie it will be 5 years in Sept. that I have been Watch and Wait at stage 0. Can you tell us anymore about what your Dr. say about taking Green Tea tablets EGCG?
Thanks.
Hi Pixie,
My doctor did not give too much of an explanation other than that studies show green tea slows down the progression. To be honest, I did not ask for an explanation for the maitake mushrooms; I just was happy to hear that there are things I could do besides simply watching and waiting. I see him again in May and I will get more information and post it.
Laurie
Laurie - Interesting that Dr. Rai would suggest a Maitake Mushroom Supplement. Until your post I had only seen it mentioned by people who are very into alternative medicine. I have a friend who was a patient of his until this year when she moved, and very into healthy eating, mostly vegan. I'll have to ask her if she knows more about his opinion about the supplement. She's the type of patient who would ask a lot of questions.
Dr. Rai was not the initial doctor to suggest this. It was the doctor from Memorial Sloane Kettering; however, Dr. Rai is well aware that I am taking this supplement and has no issue whatsoever with me taking it. Please let me know what your friend says. I too, ask questions now, but you must understand this suggestion was made on the very day I was diagnosed. To say the least I was overwhelmed. My questions at that moment were not about supplement recommendations. They were about the illness itself.
Laurie
Laurie - I will be interested in what this particular friend says, as it's the kind of thing she would be interested in and would have researched and asked about over her years with Dr. Rai, and will let you know if she has any input.And I totally understand being overwhelmed. I let my first oncologist start treatment without asking questions, and it was a major mistake.
UCLA now has two doctors of integrative medicine who specialize in cancer patients. They work with the oncologists/hematologists if a patient is interested in looking into adding natural supplements, and my doctor, if patients ask questions, has no problem admitting that it is not an area she is very familiar with and suggesting that they do a consult with one of them. As my CLL is stable for now it's something I have not pursued.
I suspect that there are plant based supplements or foods that could make a difference and wish that research was not so money driven that studies are not done on some of the things that could potentially have an effect on cancer. I know that some of my grandmother's home remedies for various things work as well as things in the pharmacy. I recently was at my pharmacy when someone came in and asked about honey for wounds. She works for a wound specialist and said that it is often used by him for infections with amazing results. I had read about honey having antibacterial properties, but didn't know that it is now in pharmacies.
I also find it interesting that one specialist will recommend something, another won't have an issue with it, but will have no opinion either way, and a third will be absolutely against it. Just as with deciding which treatment is probably the best option, opinions vary among the top specialists, which often leaves us trying to make difficult decisions about our care.
Pat
Hi Pat,
You've provided a good nutshell summary of the variability found in doctors regarding integrative medicine.
I've also heard that mushrooms can help with immunity, specifically the button stage. It could just be due to the Vitamin D content, but we'll never know without research:- healthunlocked.com/cllsuppo...
I'll be interested in your friend's comments.
Neil
Welcome to this rather exclusive club, one we'd all rather not have joined. Lots of information in the replies you have received. You will be glad you found us but I imagine your head is whirling and while its good to have information at your fingertips, unless you are a genius you soon reach overload and it all gets very difficult and technical. I have been diagnosed 3 years but many who kindly share their knowlege with us have many more years in watch and wait.
I take 1 Green Tea tablet a day and as my count is only growing slowly and I do not seem to suffer any adverse effects I continue to take it. As you are newly diagnosed I expect you will see your haematologist soon and can take the opportunity to get his or her opinion.
You will have plenty of time to come to terms with CLL. There are as you have found plenty of people on this site who have been as scared and traumatised as you probably are now. Take a breath and know that you are not alone. Lovely helpful people on this site,
Best wishes
Bubnjay
Thanks so much , can't believe there is so much information on this site, I can never remember what to ask the consultant when I see him, so I will wade my way though and hope I'm not to baffled by science
It's great to know there is so much help
Thank u
Oh just a quick question ,how common is CLL I'd never heard of it until I was diagnosed, and how do you know how long you have had CLL I haven't been to a doctor for 20 odd yrs so I'm not sure how long iv had it
Many many thanks I feel as if I gained a whole community of very caring friends after feeling very wobbly for the last few months bless you !!
Pixi
Hi Pixie,
Welcome to this friendly, supportive and informative group.
While SLL/CLL is the most common of the adult leukaemias/lymphomas, it is still rather rare, with about 2,800 diagnosed with it annually in the UK. Because it is a chronic, slowly progressing illness, most of us will have been unknowingly living with it for years prior to official diagnosis. For those that have had blood tests in the years prior to their diagnosis, it may be possible to find an earlier indication that was ignored - the doctor assuming that the high white blood cell count was most likely due to an infection. (My doctor found that I'd most likely had it at least 2 and a half years prior to my diagnosis this way, but I suspect I had it well before then.)
In your case, you may have become aware of common CLL symptoms and dismissed them as part and parcel of getting older, poor health or stress. If you can recall when you noticed increasing levels of fatigue/difficulty concentrating, the onset of night sweats, getting ill more often, swollen lymph nodes that didn't subside after an illness, then that could give you an earlier possible date for when your CLL started. These symptoms (with the exception of fatigue), aren't seen in the early stages of CLL, which is why most of us are unaware that we have it until it is picked up when we are seeing the doctor for another reason.
A previous poll shows the different ways our community members were diagnosed:
healthunlocked.com/cllsuppo...
You may find the other polls interesting also:
healthunlocked.com/cllsuppo...
I presume you've already discovered the pinned questions and posts - there's lots of other information for you to read as you feel inclined and as you've found, questions are always welcome.
Neil
My Doctor went through my medical history, fortunatelky I had a couple of thorough medicals before going to China for a couple of years and it was those that shoewed the first signs although I was not diagnosed until some time after my return. It hit me like a sledgehammer and I think the G.P. could have had a lot more training in such matters,however since meeting the consultant at Liverpool Hospital Mr Pettit and meeting people that had been diagnosed up to 18 years previously I feel much more relaxed. It would help if all doctors signposted us to this site.How would we go about arranging this? Martin
Martin, good to hear you're now feeling more relaxed about your diagnosis. With respect to how well doctors manage disclosure of your diagnosis, that would be a great topic for members to share their experiences and suggestions for improvements, so why not pose your question as a specific question - expanding on what you've posted above?
It would also be good to get member's tips on how to get doctors to recommend good support sites. I suspect doctors would do well in just being able to recommend a society like the CLLSA and suggest the newly diagnosed patient ask for the introductory booklet. When the Australian Leukaemia Foundation examined this problem a few years ago, they found that a GP typically saw about half a dozen lymphoma diagnoses in their entire career, so you can appreciate the challenges involved!
Neil
Thanks so much Neil, iv obviously got so much reading to do ,this is such a great community full of caring folk so willing to help
Thanks so much
Pixie
Hi Pixie and welcome,
I'd like to add my welcome to you though I'm very sorry to hear of your diagnosis which obviously came out of the blue for you and must have been an added shock.
I was diagnosed May 2012 in my 50's and like you I'd never heard of CLL. It was like entering a whole new world of scientific terminology. What I have begun to realise is statistically how rare a CLL diagnosis is for someone of my gender and age. The median age of diagnosis is 72 I believe and there's a greater incidence in males. To put it into context someone once told me that if I was stood in a packed Wembley Stadium (capacity 90,000), it is highly unlikely to find another CLL'er there!
To follow up on Neil's excellent explanation to your question, it is possible that many of us may have had CLL for some time prior to dx. My lymphocyte levels were rising inexplicably for a few years prior to diagnosis and it's believed I had the pre-cursor to CLL which is called Monoclonal B Cell lymphocytosis. This article by Dr. Sharman (whose superb blogs feature regularly on this site), explains what that is.
It's why my GP didn't initially react when my levels were high and it was only when I developed symptoms that the diagnostic testing for CLL was instigated. Frankly I'm glad I wasn't told any earlier.
cll-nhl.com/2013/07/monoclo...
Wishing you well Pixie, I remember just how important and reassuring I found the support of fellow sufferers following my diagnosis.
Warmest regards,
Newdawn x
Of course we drank a lot of green tea in china and I did not know I had CLL until some time after I returned. Please feel free to contact me any time. Martin
Pixie
My haematologist (who is a top one luckily) says there is some evidence that green tea does help delay CLL progression. However, if you take it as a tea drink, to get a high enough dose needed you need to drink 'vats of the stuff' every day....................I take one tablet (from Holland and Barrett) a day.
Andy
Are you currently in treatment? I was given similar info but not when I was W&W. Only during chemo. No mention was made about yogurts or probiotics though.
Green tea only showed benefit in a tiny number of very early staged CLL. During and post treatment, probiotics and yogurts are generally not recommended, due to the possibility of probiotic sepsis, where 'good' bacteria turns bad. It is rare, but is a risk.
Ultimately follow the guidance of your CLL doctor...
Welcome, Pixie! As you can see the jury is very divided on the question of green tea. For me it would just be one more pill to take or a lot of bother if I decided to go the tea route. I have friends who are very knowledgeable about CLL who swear by green tea. I suppose if it would give you a sense of doing something, it wouldn't hurt, as long as you are very careful about the source. Pesticides are an issue with many brands. I think Brian Koffman, who is a big green tea drinker, posted here about where he gets his.
I think your most important step is finding a doctor you trust, who knows CLL, and then following his/her advice, especially about supplements. I found that I was deficient in Vitamin B12 and Vitamin D, after asking for testing because of others in CLL groups who posted about their issues. My B6 was extremely high. So I supplement, with my doctor monitoring, the D and B12, but obviously don't need to add B6 to my routine. I never post doses, as it took two years of playing with my Vitamin D dose, with testing every 3 months, to find the right one for me, and it is quite different from doses that work for others. Some get no benefit from B12 in pill form and need injections. We are all very different. My doctor now checks my levels every 6 months when I have other labs done.
I suppose you are just where you started with your question about green tea, having seen everyone's responses, but you now have a new family which can be extraordinarily helpful with their responses to other questions.
Yes! Green Tea is a powerful anti-oxidant. I've been taking Matcha for a year! I suggest you do some research on-line.
Hi Pixie,
Great to have you on board.
As you can see above we have lots of great folk here on HU for any questions and thoughts you have
Like a few others I also got diagnosed whilst going for blood sugar tests.
I would look at vit D levels first before worrying too much about green tea. Ask to see if you can get a test for your vit D levels (my second test is hopefully in a few weeks time)
That said I do drink a little green tea, about 5 cups a day at most, which as you can see above is probably nowhere near enough to be significant. I would want liver and kidney tests before starting any high dose supplements. The other snag is there are no pure sources of EGCG yet. It can also aggravate your stomach so I think some have suggested sucking the tablets if you do try. The tea bags I use are labelled as "organic", but I've no way of testing if they do contain pesticides etc.
For previous articles have a Google for:
healthunlocked CLL green tea (also try EGCG)
And post again with whatever is on your mind
Best Regards,
Ernest
