Re: Comment on Mayo VitD - bone pain and CLL??

[Guest guest]

One has to wonder what or if there is a connection. (I have posted this on

'both lists' )

My current wbc has actually gone down, however only slightly, which just means

it hasn't jumped up or doubled, But as I posted on the other site here's my

story.

A contributor commented that he was experiencing bone pain and his levels had

also gone down, slightly, or had not risen. I'm guessing he is questioning if

this means that this is NOT part of CLL... I'd love to know too.

curious development in this area. In Dec. 09, after the release of the Mayo

study video, and some re reading concerning Vitamin D3 I asked to have my D3

levels checked. I half expected my levels to be 'low', but not what I

saw.....11 !!!!! At that time I was experiencing bone pain, and some numbness.

Prior to this testing I had been evaluated for my CLL and was told all was the

same, stable disease. Since I wanted to know more about my CLL at that time, I

had my FISH redone. I now had 11q, which had not been there two years prior at

dx. Both the broad array and traditional fish were done at that time. I also

found out that my zap 70, which had not been noted previously was at 90%. most

numbers were slowly doing the up and down thing. At that time nodes were

progressing in all areas, and the bone pain was bad enough that I needed pain

medication. As I began to increase the D3 levels the pain became bearable,

while on medication at least. My endocrinologist told me I had secondary

hyperparathyroidism and if the increase in D3 did not resolve the other numbers

we would have to investigate further. Happily, as soon as the numbers went up

the hyperparathyroidism was no longer an issue. I was told to proceed slowly,

and it took 6 months to get up to 41, and another 9 to get to 85 at which time

my gp began to warn of toxicity... He assumed that with the same dose those

levels would remain stable, a reasonable assumption. During the escalation

period we did the D3 levels every month, but last month he felt that test was

not necessary. About that time the bone pain came back, but this time

accompanied by sharp, stabbing periods, that quickly resolved, however if I were

standing when they occurred my leg almost didn't hold me up. This was while on

large doses of 'pain medication'. It would take two hours in the morning for me

to be able to move, even slowly. He decided to try adding Mobic to the mix

since perhaps this was partially due to inflammatory issues. The first two days

were wonderful. For the first time in months I slept through the night, and

could almost jump out of bed ready to roll. Then the side effects set in; GERD

worsened, and heart palpitations and shortness of breath on exertion were the

worst. He suggested stopping the Mobic for two days and then starting with half

dose. I did, but with only partial resolve of the side effects. We opted to

split the pill further and that seemed to stop the symptoms,though not entirely,

but was less effective on the pain.

Since I had experienced almost immediate relief when I first increased the D I

felt it might be time to up the D3 again, by 1400 iu, to now 11,400. And repeat

the test. What I found was disturbing. The D3 had dropped from 85 to 81 AFTER

the increase. Since we skipped a month, I have no idea if it had dropped even

lower.

just posted a study, on this list, that seems to say that our D levels may

indeed be a window on our cancer. I have no idea what is happening now, or

even what field of medicine to explore for explanations. I do know that I have

to do something since my quality of life is far below what I would expect for

CLL if it is indeed still stable, which I highly doubt. (for those who missed

this)

here is Chris's post:

This appear in the Journal Blood and comes from leading CLL researchers at

Cardiff University in Wales.

Drs. Pepper/Fagan state in part:

" Taken together, the evidence points toward a potentially important role for

vitamin D not only as a prognostic marker but also as a therapeutic target in

CLL.

On a cautionary note, it would appear that vitamin D levels are subject to

heritable genetic variation with 3 pivotal polymorphisms recently being

identified. "

Reference: http://hmg.oxfordjournals.org/content/19/13/2739.full.pdf+html

" Furthermore, vitamin D receptor (VDR) polymorphisms have been associated with

the risk of developing cancer and cancer progression although there are no

reported studies in CLL. "

More on VDR: http://carcin.oxfordjournals.org/content/30/7/1170.full.pdf+html

They conclude: " Only a prospective, well-designed, randomized, control clinical

trial of vitamin D supplementation will prove whether we have truly " crossed the

Rubicon " in CLL and identified a way of modifying the clinical course of this

incurable disease with a simple vitamin tablet. "

Source:

Blood:

http://bloodjournal.hematologylibrary.org/cgi/content/short/117/5/1439?rss=1#B10

had posted a musing of sorts on this subject a while back, that he

wondered if CLL ate D3... well, those weren't his words exactly, but you get

the drift. One wonders if this IS something that may occur. That the study has

stumbled on something; that D3 levels are an additional window on our cancer

progression.... There are of course other reasons for unstable D3 levels, but I

can say that I will never again skip a month of testing, at least not until I am

convinced that it is indeed stable, and remains that way for several months.

Any thoughts would be appreciated. Thanks, Beth Fillman