Hi everyone.
Just wondering whether anyone has any advice/comments on whether I'm helping or hindering my health (since my diagnosis with CLL) by taking a couple of vitamin supplements?
I take a green tea extract and a vitamin D3 supplement daily.
I am currently on stage A "watch and wait" with no symptoms other than high wbc.
Thanks very much ☺
Deb.
Deb... you should be tested first, for VitD3, B12 and folate, then if needed follow a supplementation program from your doctor...
If you have a good diet, a 'one a day' vitamin, may be best...
~chris
Hi Chris
Thanks for such a quick response!
A recent FBC did include a result for vit B12 and folate - both seem to fall within their reference ranges (serum vit B12 = 386; serum folate = 16.5).
However, I'm fairly new to all this (only diagnosed officially in January this year) so I'm still getting to grips with the mountain of figures and terms relating to CLL. I saw my B12 and folate results but I honestly have very little idea what they relate to and whether my daily vitamin supplements are likely to influence the results or not!
I guess your advice to consult my doc is correct - I'll do that if I ever manage to get an appointment with him! 😉
Thanks again.
Deb.
CLL can mask aneamia from other causes... like low VitB12 and folate... certainly did in my case.... now I get a monthly B12 injection...
I'm curious, and don't wish to hijack your thread but in the UK are these tests (Vit D3, B12 and Folate) common. To the best of my knowledge U've never been asked if I want them and I've necer thought to ask for them.
Rob
Hi Rob
Thanks for your message - very happy for you to jump in and ask anything....we're all in this together!
I'm quite new to the world of CLL so am trying to get my head around how my current routines may impact on my condition - this is why I asked whether my vitamin supplements are likely to affect the CLL.
When vit B12 and folate were mentioned in a reply, I checked my first FBC results and they were both listed there, along with many more results. There was no reference to vit D3. I hadn't specifically asked for these things to be tested..they were simply reported as part of the full set of blood results.
However, my second FBC (done at a different hospital) didn't include any reference to D3, B12 or folate at all!
I'm sure someone who knows more than I do (and there are plenty of them out there!) will be able to provide more info...I can only comment on my own limited experience and, based on that, testing for these elements in a FBC seems a bit hit-and-miss!
However, now that I'm aware some of these results can be linked to anaemia (thanks to this site!), I am going to ask my GP about an occasional test so that I can keep an eye on things.
Hope that's useful but, as I said, maybe you'll get more info from the knowledgeable people on this site which may help you decide whether these tests are worth asking for.
Good luck.
Keep well!
Deb.
Deb,
Bear in mind that different countries have different approaches. Was going to ask what country you are from but I re-read your comments and spotted 'GP'. I think you must be UK based!
Had a quick look at my results going back to July 2012. None of those mentioned, the only unusual one was CD4 last July for me when my consultant was deciding whether to drop my aciclover and septrin. Which given the CD4 result he did.
rob
Hi again
You are correct, Sherlock - I am in the UK, close to Manchester to be more accurate!
I really don't know what CD4 is (yet!), but I can say it doesn't feature on either of my FBC results....perhaps we're all at the mercy of our haematologists or other medics when it comes to testing for specific things?
Although, now that we're building up our own knowledge about CLL (and, let's be honest, we do have a vested interest here!), perhaps we can engage in conversations with the medics rather than simply being passive patients....?! ☺
Have a great day.
Keep well!
Deb.
In Australia and I very much expect in the UK, the CD4, vitamin D (actually serum 25 hydroxyvitamin D or Serum 25(OH)D level), Folate and B12 tests are not done normally. Some or all of them may be added to your standard panel of tests if your doctor is monitoring your levels over time.
The CD4 test reports the level of T helper lymphocytes. These are the T cells that work with your B lymphocytes to help the B lymphocytes develop and churn out antibodies. The CD4 T cells levels are knocked down by the Fludarabine (the F in FCR), which suppresses your immunity (because your ability to make antibodies is crippled without them). Rob's aciclovir (antiviral) and septrin (antibiotic) would have been prescribed during CLL FCR treatment as a prophylactic against viral and bacterial infections until his T helper cells recovered. Rob's consultant was checking if his T helper cells had recovered enough for him to stop taking the prophylactics.
Serum 25 hydroxyvitamin D / Serum 25(OH)D would not be done unless you requested it (probably because you read on this site how important it can be in reducing CLL related fatigue) or your doctor/specialist thought your health might be affected by a low level.
Folate and B12 levels are done as a suite of tests to check for causes of anaemia/fatigue because adequate levels of these are needed to make red blood cells. I know this because my haematologist arranged for a thyroid function test (TSH - Thyroid Stimulating Hormone and Free T4) and a vitamin B12 and folate study last January in an attempt to find out why I got puffed easily when trying to do anything strenuous. The results came back as satisfactory, so sadly it must be due to my CLL. In my case the serum vitamin B12 test came back low, so they used more of my blood sample to check for serum active B12 (a more accurate test) and that was deemed 'sufficient for clinical function'.
Neil
Hi Deb
Am recently diagnosed with CLL (March) and live in New Mills, working in Manchester. Also trying to get my head round it all.
Good luck!
Suekupa
Hi Suekupa
Good to hear from you - another close-ish neighbour here in the North West!
I see you have very recently been diagnosed. What's your story?
This CLL lark is definitely tough to get our heads round but I think I'm just about settling into things and relaxing a little, 6 months after my diagnosis. The CLL isn't any less scary but I've realised that if I spend too much time thinking and worrying about the future, I'm in danger of missing out on the present!
Hope you're on your way to settling your mind-set - it's tough, but there are plenty of people on this site (and numbers seem to be growing every day!) to offer support, advice and just a friendly ear.
If you want to keep in touch we can offer each other mutual support as two North West Newbies!
Keep well!
Debs.
Hi Deb,
Just to say that when I asked for Vit B12 and Vit D3 tests recently, my haemo doctor just added them to the other blood tests he was writing up. He was very pleasant about it and said it was no problem to test for them. 
(I think if I'd asked my GP, he would have been equally helpful).
The B12 came back as very high (well I had been taking supplements with it in). The D3 was slightly under the recommended range, so the doc suggested I get tablets from the local chemist, and take 1000 iu (international units) daily. Which I now do. And I've stopped taking extra B12 for now.
As others have already said, it is good to ask for these things to be checked, because we don't want to be taking too much of anything (or too little). As for the green tea, that's more complicated and depends on what doses you're getting. Other folk know more about that than me. I believe it can cause problems with the liver, so be careful.
Best wishes,
Paula (on the other side of the Pennines to you!)
P.S. Like you, I don't know what CD4 is. I often read about it on this site, and should know by now, but there is so much to learn.
Hi Paula
CD4+ T cells is part of a Flow Cytometry, not the CBC, FBC test.
Diffferent test...
Therapies like FCR, BR, FR etc. can reduce the number of CD4+ T cells to a very low level... similar to HIV/AIDs patients. HIV virus attacks and depletes CD4+ T cells.
Post treatment for CLL, it can take up to 2 years for the CD4+ T cell levels to return...
en.m.wikipedia.org/wiki/T_h...
Thanks for this, Chris. But even after reading those articles (several times), and Neil's post above, I'm still finding it hard to get my head around CD4 and T cells. It seems that CD4 itself is a protein that sticks on the surface of mature T helper lymphocytes. Do all mature T helper cells have CD4 on them? Is CD4 found anywhere else, apart from on T cells?
CLL is said to be a cancer of the B lymphocytes. Does that mean the T cells are usually OK (till knocked out by chemo)?
Flow Cytometry tests (to measure CD4) don't seem to be done very often. Yet they seem to be very important, seeing as Rob's doctor was watching them to see if he could stop his antibiotics and antivirals after FCR. I don't think I've ever been tested for them. Is it only after chemo, that the numbers of CD4 + T cells become significant?
Maybe my brain just isn't up to all this, and maybe I don't really need to understand it. But I keep hearing about some of these things, and wish I did understand them better.
I hope you're OK, and have recovered from all the hard work of the Niagara conference.
take care,
Paula
CD4 is on a number of other immune cells, but its used as an indication of the state of the immune system. After treatments like FCR the CD4 counts drop, and often shingles occurs...
In the U.S. they seem to do more flows... not very common however.
Speaking of the conference... I want to have a word 
with whoever gave me this Extraordinary Awful URI... one month today and only a slight improvement... thankfully a chest xray showed it wasn't pneumonia...
Been on the moxifloxacin, sputum test pending...
No tendon problems yet... but they can manifest months after.
Interestingly it has really ramped up my peripheral neuropathy..., just like the good old days of vincristine... but it effects my Pasodoble abilities.💃🏽
Pasodoble abilities??? OK, I've just Googled it. Now I get the picture
Seriously though, I'm so sorry about the respiratory infection, Chris. A relief that it's not pneumonia, but we keep hearing of people's bad experiences with those sorts of antibiotics. Hopefully the sputum test will show that a different antibiotic will work even better.
Maybe you didn't get the bug from anyone at the conference... It would be nicer to think it came from somewhere else and not from those lovely people... Maybe the plane, on the way there?
Wishing you well,
Paula
P.S. Thanks for the extra info re CD4. I'm beginning to get the idea of it now.
Could have been 4 hours of recycled air... on the plane... of course...
Viral then fungal... my guess... the antibiotics haven't had much effect... last day tomorrow anyhow.... prophylactic at any rate...
CD4 and CD8 are the main T cells... they are in a ratio to each other... in a healthy immune system. In our immune systems... this ratio can be reversed...
This is where my eyes glaze over... but Dr. Hamblin has a good bit on it
mutated-unmuated.blogspot.c...
Yes, better to blame it on the plane... As you say, maybe it was viral/fungal so the antibiotics didn't help, but have at least warded off any other bugs lurking around.
When will you get results from the sputum test?
P.S. Just noticed your extra bit about CD4 and CD8. Now I'm confused again.. CD8 doesn't seem to be talked about or tested for much, well not like CD4, anyway. I did try to read your link to Dr Hamblin's post about it, but when I saw a load of other sorts of CDs popping up, it was more than my eyes that were glazing over... Brain gave up entirely. But thanks anyway.
Thanks everyone!
Loads of interesting stuff in response to my original post - useful and relevant, as always from this most supportive and positive online community 😊
Thanks again!
Keep well everyone.
Deb.
I have not had my B12 or D3 tested (and I should) however i take 3000-4000 iu of D3 and 1000mg of B12 sublingual daily. My ALC/WBC was steadily rising since my diagnosis but as soon as I started this regimen it dropped about 20% and has stayed there for a year and a half. I know that CLL can act this way but as long as it appears to be helping and it's cheap I'll keep doing it. As a side note if found that drinking tons of green tea just made me pee a lot more. Green tea supplements didn't seem to do anything either. That's just my experience, your mileage may vary.
Hi joed1rt,
It's great that your ALC is stable at the moment. However, I would encourage you to get tested for VitD3 and B12 (you yourself have said you should ). There can be toxic side effects with too much VitD3, as it is fat-soluble and harder for the liver to deal with. Vit B12 is water soluble so not likely to be such a problem, but it could still be worth getting it tested.
nhs.uk/news/2013/06june/pag...
I don't know which country you're in, but here in the UK, it was no problem for me to ask my doctor to do those tests, along with the standard full blood counts I get done regularly for CLL. But I did have to ask - the tests were not done automatically.
Best wishes,
Paula
Neil stated "Rob's aciclovir (antiviral) and septrin (antibiotic) would have been prescribed during CLL FCR treatment as a prophylactic against viral and bacterial infections until his T helper cells recovered. Rob's consultant was checking if his T helper cells had recovered enough for him to stop taking the prophylactics. " and as ever was spot on.
I started FCR in July 2012 so by July 2014 had been on them(aciclover and septrin) for two years, that is the six months of FCR and a further 18 afterwards. What actually happened was he ordered the CD4 test as well as the normal set of tests. This came back a bit low but above a level he would be concerned about. I actually continued with them until November 2014 after we had a discussion as I was going on holiday abroad and felt a bit of additional support might be wise. In this case I asked for the extension and there was no pushback. I stopped about a week after my return, when the packet ran out (hate throwing things away)
rob
Hi all,
I was diagnosed last summer and have had 4 FBC tests since then and am now on w&w with tests every 6 months. However, I read that vitaminD levels can be very important where CLL is concerned so when my last test was done I requested that vitD be checked. Glad I did. Rather than an optimum level of 80 nmol I was down at only 17 ! My GP then prescribed accordingly. However, given that a great deal of research suggests that one's early vitD level can directly affect one's long term prognosis I am surprised that I had to request this test. Surely it should be a matter of course where CLL is concerned? Or am I missing something?
GPs are swamped with reading material relevant to their practice. Blood cancers are rare, so your GP would likely see keeping abreast of CLL research as a very low priority.
The same could be true of an oncologist or even a general haematologist, though vitamin D levels are gradually being recognised as relevant in other cancers. You would hope that vitamin D levels would be checked if you went to a CLL specialist, but even then you need to bear in mind that we haven't yet discovered why vitamin D levels can be low in CLL patients and why it is another prognostic factor to consider. Is the CLL using up vitamin D stores and if so, is boosting them just going to boost the growth of the CLL or is chronic low vitamin D a contributing factor to the development of CLL? We still eagerly await the report from the Mayo Clinic study.
I had my vitamin D level checked over 5years ago towards the end of our summer and my haematologist was surprised when it came out low. There doesn't seem to be any marked change in my CLL progression after I boosted it to a healthy level but it certainly coincided with a turning point in improving my fatigue levels and my ability to engage in reasonable amounts of exercise without wiping myself out for a day or two following.
Neil
Hi Catherine,
Good for you, asking to be tested so you found out you were very low on Vit D3.
I'd be interested to know what dose of of Vit D your GP prescribed. My test came back as just under the lowest end of the normal range, and I was told to take 1000 iu daily. However, your levels were MUCH lower than mine...
I agree, it does seem strange that very few doctors seem to test for this, unless we ask for it. But as you say, maybe we are missing something?
Wishing you well,
Paula
PS. I hadn't read Neil's post above, when I wrote this. I now see the possibility that boosting our Vit D levels could actually boost the growth of the CLL. O dear... These things are so complicated. As Neil says, we await the report from the Mayo clinic study, with great interest...
Hi Paula
I have been prescribed 3,200 iu daily. With regard to whether or not vit D supplements are beneficial the Mayo Clinic are indeed continuing studies but so far all of my online searching has indicated that low levels are not good. However, I will be seeking more înformation on this. In the meantime I fully intend to bring my level to within normal parameters.
The brief Mayo Clinic footage on this link may be of interest... gotcll.com/vitamin-d/
Hi Catherine,
Thanks for getting back to me, about the doses of Vit D3 you were prescribed.
It was very interesting to see Neil’s reply to you. I’d like to try his formula on my own figures at some stage, because like you, I hope to bring my Vit D levels up into the normal range. Your levels were so much lower than mine, I realise you’ll need much bigger doses than me.
I’m sure everyone would agree that low levels of Vit D are not good, and it still surprises me that most doctors don’t seem to be concerned about this. I think the possible problems only come if people boost their levels much too high, without a doctor’s advice and without blood tests to check what their levels are.
There do seem to be varying opinions on all this though. It’s possible that levels that some doctors consider too high, may actually have some advantages for folk with CLL. But it might work the other way for some folk… so many variable factors involved…
As you say, we keep looking for any new information on this.
Best wishes,
Paula
Catherine, I've put together an experimental spreadsheet based on a paper that provided a formula for estimating the daily dose of vitamin D3 needed to boost vitamin D blood serum levels. I've included it in a spreadsheet that will enable people to plot their blood test results and I hope to have that available for download soon. I'd greatly appreciate being able to use your figures to test it. All it needs are your:
Age
Body Mass Index (BMI) or height and weight
Albumin concentration (from a recent biochemistry electrolytes blood test result)
Measured Serum 25(OH)D level (17 in your case)
Desired increase in above (I used 43)
I've plugged in guesstimates for the values I don't have and I've got a reasonably sensible result, but would like to see how it compares with actual figures. If you are prepared to provide me with the above (via a Private Message will be fine), please reply. Even if you don't know your albumin concentration, I can try the extremes of the normal range (3.5 to 4.7) and see what results it gives. It would be fantastic if we can use this with your subsequent test results.
I hope that you notice a major improvement in your well being/energy levels when your vitamin D level improves.
Neil
My first CLL specialists recommended to take as few supplements as possible. She checked my vitamin D3 level. It was low so I take that as a supplement. She specifically recommended against Fish Oil supplement. She said eating fish was fine but the Fish Oil supplement would help the cancer more than me.
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