Re: Vitamin D and CLL connection found

[Guest guest]

This is last year's news. It still is by no means clear that

taking vitamin D has any effect on outcome in CLL.

Terry Hamblin MD

[Guest guest]

In a message dated 30/06/2011 mike abrams writes*:

* It is unclear that Vit D has a positive outcome on CLL or

other lymphomas, but do you believe that abnormally low

levels of Vit D could cause a more unfavorable outcome?

Or it could be that unfavorable outcomes cause low vitamin D

levels. Association does not imply causation. Or they could

both be related to a third factor.

* What risks exist for taking Vit D with CLL or related?

Only hypercalcemia which can cause kidney failure. So anyone

on vitamin D must have regular checks on calcium levels.

* Should those of us with low Vit D consider supplementing

for bone health purposes? Should calcium / magnesium / zinc

/ B12, etc. be added?

There is evidence that giving vitamin D and calcium improves

bone health in those with low vitamin D levels.

* Should we consider adding sun exposure with or instead of

Vit D, balancing natural Vit D vs. the potential risk of

melanoma?

Yes

Terry Hamblin M.D.

[Guest guest]

Frances, your post could relate to my situation. But this

disease is so unusual because we all seem to react

differently not only to the disease, but to various

treatments.

I was dx in 03 at 90K WBC. By late 04, I was approaching

300K. I began treatment early 05. Remission was short lived

probably because I had RF and later found I was p17

deletion. The counts were moving up again as years

progressed. I kept thinking this is the year for the next

treatment. Then in early 09, I may have gotten lucky when I

cracked a couple of ribs and it was discovered my Vit D was

very low. I had the mega doses (50K of D3) weekly for a few

months and now when I remember 2K D3 per day along with

calcium. The D3 is for bone health but my WBC is not much

higher now then it was in 09 when I began the D. So is the

D3 stabilizing the CLL? I don't think at this time anyone

could say. But I am trying to always remember the D3 since

beginning to read these reports.

[Guest guest]

Hello Dr. Hamblin;

A few questions come to mind:

- It is unclear that Vit D has a positive outcome on CLL or

other lymphomas, but do you believe that abnormally low

levels of Vit D could cause a more unfavorable outcome?

- What risks exist for taking Vit D with CLL or related?

- Should those of us with low Vit D consider supplementing

for bone health purposes? Should calcium / magnesium / zinc

/ B12, etc. be added?

- Should we consider adding sun exposure with or instead of

Vit D, balancing natural Vit D vs. the potential risk of

melanoma?

Thank you,

Mike Abrams

Warwick, RI

This is last year's news. It still is by no means clear

that taking vitamin D has any effect on outcome in CLL.

[Guest guest]

Mike,

I live in sunny (usually) southern California and everyone I

know who has had their Vitamin D tested has either been low

or below the bottom of the scale including me. Most of these

people do not have CLL. Both my primary and my hematologist

agree that I need to get my level into a good range and

we've been playing around with doses for the last year

trying to get to one that keeps me in an acceptable range.

This is for bone health, not CLL.

Like Dr. Hamblin my hematologist feels that the jury is out

on any connection between Vitamin D and CLL. Calcium and

magnesium need to be in balance with Vitamin D.

The last time I adjusted down my D level crashed and my

parathyroid level was very high. I was also much more

fatigued than normal. Now I'm on 10,000u of D daily and will

be tested again next week for D and PTH (parathyroid). I am

less fatigued. I'm still waiting to see an endocrinologist.

I will be interested to see what raising the D has done to

my PTH.

I was also tested for B12 and mine was normal. I think it's

important not to just play around with supplements just as

it's important, if you feel that you want to try something

holistic, that your doctors are aware of what you are

taking.

All of the above tests are simple blood draws. Better to be

monitored than to create more problems for ourselves trying

to fix something that doesn't need fixing.

Pat

On 6/30/11, Mike Abrams <mikeabrams35@...> wrote:

/message/15429

[Guest guest]

What I meant was that this issue has already been

extensively talked about on this site and there is nothing

new to say about it. The fact is that people with bad CLL

tend to have low vitamin D levels. Perhaps that's why they

have low vitamin D levels; perhaps it is not. Perhaps the

vitamin D levels affect the CLL; perhaps the CLL affects

the vitamin D levels. Perhaps they are both the result of

something else. What is not known is whether giving vitamin

D will make the CLL better. I rather doubt it but we will

no doubt find out soon as someone is bound to try it. I

just caution against going off and taking vitamin D on this

evidence. Suppose vitamin D is a fuel for CLL and the reason

that bad CLL has a low vitamin D is because it has used up

all the fuel.. We don't know yet and it is irresponsible to

pretend that we do.

Terry Hamblin MD

Frances wrote:

/message/15434

[Guest guest]

Re Dr. Hamblin's comments:

Dr. Hamblin's comments are meant to be cautionary. I'm sure

he's not denigrating the study, though some of his language

might imply it. " Old news " for ex. actually refers to

findings that were published only 8 mos ago in the medical

Journal " Blood, " defined in Wikipedia as " the most cited

peer-reviewed publication in the field. "

The heading of the June 2011 article in Mayo Clinic Health

Letter reads: " Vitamin D may influence progress of one type

of leukemia " and is about CLL. Every cancer patient knows

what the word " may " means; it implies that it also " may

not. " But 3 yrs later, out of 390 patients, the study found

that " CLL was 66% more likely to progress and require

chemotherapy among those who had low vitamin D levels, than

it was in those who had adequate Vitamin D levels when they

entered the study. "

The Mayo Clinic is not an alternative medicine facility but

one of the most outstanding research centers in the world.

It was a doctor at Mayo Clinic who discovered the link

between Vitamin K and jaundice, a previously fatal condition

and it was the Mayo Clinic's extensive studies about Vitamin

C which finally put the Linus ing claims about Vitamin C

and cancer scientifically to rest.

This is a patient-to-patient chatlist. Oncologists may

choose not to tell their patients, friends, family members

and colleagues with CLL about this or any other study. But

when something contains as much well-founded hope as this

finding, I frankly would hope my oncologist would make the

information available to me, with the cautionary proviso

that so far, the conclusions apply only to previously

untested patients.

-Frances Friedman

[Guest guest]

Frances;

Can you describe the possible connection between Vitamin K

and jaundice as I have not yet heard of this?

I have been taking Vit K supplements because I have no

appreciation for healthy green veggies.

However, I have dealt with autoimmune hemolytic anemia, and

therefore, jaundice, as part of my lymphoma.

Thanks again,

Mike

Frances wrote:

/message/15434

[Guest guest]

At the moment it is just guesswork. Somebody will

already be running a trial of vitamin D in CLL.

wrote:

/message/15451

[Guest guest]

I've had my vitamin D levels tested and they are normal.

Does this mean my CLL is in overdrive?

Or, perhaps, it is because I have 11q del and am unmutated.

Maybe all the science regarding FISH and everything is moot

because vitamin D levels are more important.

We could run a clinical trial whereby we deprive half the

group of vitamin D, and let the other half have adequate

vitamin D.

Personally, I don't think vitamin D fuels CLL. I think

abnormal growth signals fuel CLL.

[Guest guest]

It's my opinion that the jury is " out " on the important aspects of this

connection that haven't yet been researched and " in " on the ones that have.

I prefer to leave it to my fellow CLLers to decide for themselves what is

" irresponsible " .

For those who would like to read two intelligent, unbiased presentations in

addition to the Mayo Clinic:

-from Venkat's excellent website:

http://clltopics.org/Vitamin_d3.htm

-from Science Daily:

http://www.sciencedaily.com/releases/2010/11/101104094038.htm