Hi all - first post from me.
My husband has CLL and I have read lots about the benefits of taking Vitamin D3. I want to get him on this. Any advice as to what strength? Have found a good make by Healthy Origins which is 10,000 IU.
Also, any recommendations for green tea supplements?
Hello shellsb
Welcome to the group and although I'm really sorry that your husband has CLL, I'm glad that you have posted.
Many with CLL are depleted of Vitamin D and need to take Vitamin D3 supplements. However, it is important that he gets his level checked properly. His GP can do this with a blood test. You can't just guess just how much he might need to take and you need to be sure.
There are previous discussions on green tea and also Vitamin D but my advice is that he gets to his doctor about the Vitamin D.
If you can't find the answer to any questions you may have, in the archives, then please feel free to ask anything here.
I am wondering how you are coping?
Warm wishes
sparkler x
I asked my GP to check my Vit D levels and they were found to be below the normal accepted lower limit. Have been on 1000iu supplement for 6 months and am now in the right place between upper and lower recommended limit. I have blood tests every 3 months to ensure I am not over loading. So as sparker says get yo r GP involved - find out whether there is an issue before taking any supplements. Remember just because something is good for you - it does not follow that taking very large amounts is better can actually be dangerous!!
With green tea extract you need to be careful that there is no contamination so get a reputable brand rather than a cheap supply from the net just to be on the safe side
take care Andy
Thanks Andy - looking for a very natural brand of green tea extract. No nasty chemicals hopefully. Take care.
Brand is no real guarantee of anything... you need to know the source of the green tea... Chinese green tea is laced with pesticides some of them banned. Japan would be a better source. However, a doctor leading the Mayo clinic study does not recommend the use of commercial EGCG... no way of knowing the contents...
More cllglobal.org/Resource_File...
Since June 2017 have been taking 1 pill of decaf green tea (350 mg EGCG) from Life Extension. Tea comes from China, but convinced company QC standards and processes assure no harmful ingredients. I agree China is suspect, but everybody needs to do their research to trust the company issuing the product. Glen Sabin (author of book n of 1) recommended Life Extension which is company he used when he took high daily dose (4g) to cure him of CLL. There are very few green tea products from Japan. One looks pretty good titled Teavanna which comes from a region in Japan not impacted by the Fukushima radiation spill. Based on my research, avoid the following regions--Shizuoka, Tochigi, Chiba, Kanagawa, Ibaraki.
Welcom shellsb
This is a popular topic many will be able to add their experience.
At the moment the search function here is erratic and not functioning properly yet. adding CLL or /cllsupport ahead of the search helps return relevant information but not all the time. (HU are working on this)
Here are a few links to earlier discussion about vitamin D here in our community that may be helpful.
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
Nick
Thanks Nick - this is really useful!
Hi Sparkler,
Thank you for coming back so quickly and we will make an appointment to see the GP on the vitamin D. Do you take green tea yourself?
I am not too bad - thank you for asking! My husband was only diagnosed in June after a work health screen picked up his high WBC. He is only 39, so as you can imagine our lives have been turned upside down.
We are in a good place at the moment. We were lucky enough to see a CLL specialist in London recently and all my husbands prognostic markers are very good and he is on W&W.
I struggled in the beginning, but the more I learn and speak to people, the better I feel. There is so much support out there, particularly from this site so thank you for that!!!
I hope you are well and doing ok.
Hope to speak again.
Shellsb - Be sure, if your husband needs vitamin D supplementation, that he has his level rechecked every 3 months until he has leveled out at a healthy level for him, then every 6 months, especially if you live in an area where the amount of sun varies a great deal from season to season. It took 2 years for me to find the right dose, and in reading posts from others, it's clear that we all level out at very different doses.
Thanks pkenn for the good advice.
Hi Pkenn I take the vitamind3 and have done for some time even when the suns out the Holland and Barrett ones but I haven't had anything checked is ther a problem if you take too much
J
Depends on the dose, you can get hypercalcemia with too much VitD, it can be fatal... best to discuss this with your doctors and get the correct dose. There is a 'sweet spot' in VitD3 levels, you want to be in it... but toxicity is rare.
The advice I've seen and gotten from doctors is to make sure you are taking D3, not D2. Personally I would not consider supplements without being monitored. I should get enough vitamin D from the sun, living in southern California. My system doesn't process it correctly and I need a fairly high dose to keep it in a healthy range. I don't mention numbers because my dose is, very probably, not the right one for someone else.
Hi,
I too had my Vit D levels checked and they were found to be low, I took a supplement but was advised to stop taking it while on FCR.
Just something to be aware of on green tea. I starting taking it very soon after I was diagnosed and at my next hospital appointment my platelet count had dropped, after doing a bit more research into green tea I found that this could be a side effect. I stopped taking them and my platelet count increased again. I'm not sure if many others on here have found the same happened?
Louise
Hi Louise. I am interested in knowing a bit more about your taking green tea and platelets drop. Can you tell us how much green tea did you take (EGCG mg) daily, how long, and how much your platelets dropped? I have been taking only 1 decaf green tea supplement (350 mg EGCG) since June 2017 and my platelets dropped from 119 to 104. I also noted my WBC slowly dropped from 3.5 to 3.0. However, my lymph nodes have decreased in size and my Hemoglobin has gotten better (from 12.3 to 13.3). I was hoping to eventually take more decaf green tea, but need more research. I am taking Life Extension decaf green tea which comes from China. This concerned me initially, but based on my contacts with company and reviews, they have high QC standards and believe it's safe from harmful ingredients. Also recommended by Glen Sabin (author of book n of 1) who used this product at high levels and it cured from CLL.
Hi,
From what I remember it was a 'normal' dose tablet that I bought from our local health shop. I tried drinking green tea but didn't like the taste. I've always had a problem with low platelets, they seem to hover round the 120 mark and with the green tea tablets went down to below 100. As soon as I stopped the pills my count went back up. I looked at side effects on line and this was one that was mentioned.
Taking green tea was something I'd spoken to my specialist nurse about before I started taking it as I was careful not to do anything detrimental to my health and I still am. The only supplement I will take is Vit D as I have low levels of that and with the added risk of skin cancer I'm not prepared to be out in the sun without a very high factor sun cream.
My own personal view is that I'm not convinced that green tea could cure CLL - a cure as simple as that would be fantastic and incredibly cheap.
Take care,
Louise 
Thank you Louise for responding with valuable information. I also am dealing with skin cancer & have to use zinc oxide or titanium dioxide based sunscreens, especially when I play tennis. It's seems clear the green tea impacted your platelets and you were smart to stop. My platelets dropped and my WBC to 3.0 from 3.5. Was your WBC impacted also?
Thank you
Mike
Hi There,
I am being treated for CLL and my consultant says Supplements and Herbal Teas are a definite NO NO!
I think that us just plain silly advice. I was at stage 4 when diagnosed and treatment recommended as the symptoms were progressing fast doubling more or less monthly. I stopped the progression in its tracks by taking varying amounts of supplements. Then went for treatment (obinutuzumab + chlorambucil) and took supplements in between treatments. No side effects (no nausea or pains or rashes etc) alto i rested a lot and saw remission in 3 months (took treatments for full 6 months until a month ago). Am 73. I took double normal doses of supplements which is way below therapeutic doses as i do not trust taking too much of one thing. I took green tea and curcumin supplements and vitamins like D, B12 and E etc. And drops of H2O2 (30 % human ingestible ) l cannot be sure what helped but am sure these did no harm. A top CLL researcher told me it was fine what i was doing.
Louise66,
Some taking Green Tea/EGCG have reported changes in their platelet function. Chemo treatments can do this too and I've heard of Green Tea/EGCG being called the 'Poor Man's Chemo'. This is exactly why you need to fully inform your medical team of what supplements you are taking so that they can keep an eye out for any changes of concern, which may result in a recommendation to reduce the dose of even stop taking it.
John133,
Your consultant has provided standard advice which is good practice. Different supplements can work to increase or decrease the effectivness of treatment, plus they can put an extra load on your already challenged kidneys and liver from the chemo treatment and other medications that are routinely provided to help you get the most out of the treatment while managing any side effects.
If you consider that you do gain benefits from the supplements you are taking, ask your consultant when you recommence taking them.
Neil
If you are taking cyclophosphamide or perhaps any other nitrogen mustard based treatments it is important not to take St. Johns Wort or drink anything containing grapefruit juice or the juice of Seville Oranges. They can impact treatment. Further, if you have had fludarabine, you must have irradiated blood and blood products for life....
Hi..I have also read about this. Like you my husband was recently diagnosed at 46 so they are in the minority of people diagnosed. We were devastated and it took 3 months for me to start looking online and researching as I was scared of what I would read. Finding this forum has turned everything around for me. I no longer live in fear for my husband now but am reassured daily how CLL really is becoming so much easier to treat. Last night I watched an interview on YouTube by Dr Micheal Keating, its called ' my hopes for the furure of cll research'. It made me feel so positive ..I recommend you watch it. Back to the VitD3....I am going to check with my husbands specialist before I start him on this...let us know how you get on
Maria
xxx
Hi Maria,
So sorry for the delay in coming back but just wanted to thank you for recommending the Dr Michael Keating interview. Just watched it and you're right, it's really positive!
Hope your husband and you are keeping well.
Shelley x
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