Re: CLL with low levels of vitamin D

[Guest guest]

Thus far there is no evidence that taking

vitamin D supplements affects CLL outcome.

[Guest guest]

YuVonna, I was having excruciating bone pain and my

oncologist did a Vitamin D level and found mine was

extremely low. I was told that this is very common with

cancer patients. I am not sure if he was talking about my

CLL or cancer in general. I was diagnosed in 2006 and have

been in a watch and wait position the whole time. When I

went on supplements that helped tremendously. I just

thought I'd share with you my experience. I hope that helps

a little. Have a blessed evening!

~Tammy~

YuVonna wrote:

/message/15403

[Guest guest]

YuVonna,

Yes! Do ask for your Vit.D levels to be checked. My

oncologist had to double my Vit. D supplementation after

checking mine. I have also been on watch and wait---for

almost 9 years. Hope that helps.

Blessings and health,

[Guest guest]

I just saw my Onc this past week and didn't know they tested

my Vit D level until the nurse called me the next day and

said my D levels were low. She called in a scrip for 50,000

units to take once a week for 8 weeks. They will recheck

level next month and after this scrip is gone then I am to

take 2000 units per day. I was diagnosed with CLL with nodes

in 1994 and went into remission after taking Leukeran and

came back last June. I am W & W until the MK 2206 study is

available here in Omaha, NE.

Thank you for sharing.

Jan

[Guest guest]

Vitamin D seems to be the new hot topic in medicine. Both my

hematologist and my GP feel that the jury is still out as

far as a connection between CLL and low Vitamin D levels -

that we need more studies to prove one. However, almost

everyone I know who has been tested for Vitamin D has been

deficient - not just CLL patients. It certainly doesn't hurt

to have yours tested. It's important for bone health. It

also doesn't hurt to have your parathyroid tested when you

have labs done. I recently had mine tested and it is very

high. Usually calcium counts would indicate that there might

be a problem, but my calcium has never been out of range.

Pat

[Guest guest]

YuVonna,

My hematologist tested me for vitamin D (during " watch and

wait " ) and it was low. After taking a prescription dose I

now take over the counter D (~3000) and my level was within

normal range at last blood test.

Chris

[Guest guest]

Male 61

My specialist has me on 2000 mg daily.

[Guest guest]

I was diagnosed with cll in 2009 and at that time my GP

checked my vit D level. It was very low and I immediately

went on a prescription for vitamin D. My levels are on the

high side now and I continue to monitor my vitamin D level.

Checking my vitamin D level was never suggested by any of

the cll specialists. I have visited five specialists over

the past year. I also have been reading reports on this

correlation and would like to know if this report is true.

I am still in the watch and wait period.

[Guest guest]

My hematologist feels that the jury is still out as far as

the connection between Vitamin D deficiency and CLL. However

Vitamin D is needed for bone health and almost everyone I

know who has been tested, with or without CLL, has been

deficient and has ended up adjusting their supplement dose

until they find the right one for them. It is important to

be monitored regularly rather than just experimenting on

your own.

Pat

[Guest guest]

Vitamin D levels are more often low in advanced and

aggressive CLL, but no-one knows whether this is cause or

effect. There is no evidence that raising vitamin D levels

does anything for CLL outcome but it does do something for

bone metabolism and can raise blood calcium levels.

Terry Hamblin MD