HUGE VitD3 study at Mayo Clinic to include CLL

[Cllcanada]

Pimary Objective

To determine if vitamin D replacement in vitamin D insufficient patients with early stage chronic lymphocytic leukemia (CLL) being managed with observation can improve the percentage of patients requiring treatment with conventional therapy at 36 months to that of a control population of vitamin D sufficient patients.

Secondary

To assess if vitamin D replacement will increase the tumor response rate in Vitamin D insufficient patients.

For Rai Stage 0 and 1 CLL, untreated, SLL Stage 1

clinicaltrials.gov/ct2/show...

Finally this question will be answered with science...rather than speculation and wild claims.

[AussieNeil Administrator]

VERY interesting Chris!

I see that Mayo have been quite selective in what cancers they've chosen for inclusion in the study, which interestingly includes DLBCL, so they obviously expect to find some interesting vitamin D involvement with the progression of those specific cancers.

I presume the inclusion of Alaskan natives is because of the chronic levels of vitamin D insufficiency in that population due to their environmental low sunlight levels as well as low levels of cholecalciferol from their traditional food sources?

Neil

[Cllcanada Top Poster CURE Hero]

Of interest will be what will they use as the optimum serum 25(OH)D level.

[littleriver]

Would you recomend taking vitamin D3? I was diagnosed about 6 months ago and am on "watch and wait" and do not have to go back to the hospital for 6 months.

[kavidacat]

littleriver - You need to have your VitD levels checked first, then consult with youir GP about whether or not you need it. I have mine prescribed by him.

[Cllcanada Top Poster CURE Hero]

Very good advice kavidacat... yes CLL patients need to have their serum VITD3 levels checked and monitored by their GPs.

There is no indication that augmenting your VitD3 level will have any effect on your CLL, this is what this trials is trying to determine. But, it is good to get your levels in the 'normal range' for bone health and many other reasons...

[SimplyauburnUK]

Having just had my 6 month check last week in UK ( still w/w) I asked my consultant if she would check my VitD3 level - she readily agreed and added it to the blood test list and then said," but when I get the result I don't know quite what we shall do with it". She acknowledging the issue of whether it actually affects CLL or not.

[MsLockYourPosts Passed Volunteer]

As a resident of Southern California, it never occurred to me that my Vitamin D level could possibly be low, but because of all of the discussions about it on CLL lists I asked to have it checked, as well as my B levels, thanks to a couple of CLL friends mentioning that their B12 was low. I threw in a few other things as well on my list of things I wanted checked - might as well get as much as possible out of those pokes!

My B6 was sky high, but my D and B12 were well below the normal range. I am at the end of two years of adjusting my vitamin D and B12 doses up and down (retested every 3 months and adjusted depending on what the counts showed) until we (my primary and I) think that we have hit on the best doses for me. In the process I have learned that many think taking D3 is better than D2 (in the US D2 is by prescription, but D3 is not) and that B12, if taken in pill form should be sublingual.

I didn't do any of this expecting an effect on my CLL, but was hoping that, rather than just being a little healthier, the D would prevent further loss of bone density, which tested in the osteopenia range two years ago. As I am very tall, in younger days I looked forward to the day I would shrink a little so it would be easier to find pants that are long enough. When I found out that the shrinking happens because your spine is degenerating, I changed my mind.

Last month I had a new Bone Density Scan and my physical. My counts have remained stable for the last 6 months, so it seems we have probably finally found the right doses for me (don't go by what anyone else takes!!!!!) AND my spine has improved to the normal range and my femur tested as stable. I am not taking Fosamax or any other meds to improve bone health, just the D3, with Calcium and Magnesium and B13. One CLL specialist recommended a range of 60 to 80 (US) as a healthy D level and my primary sees that range as a good one to aim for. Like Chris, I will be interested to find out what the Mayo decides is optimum. Since improving my levels, I have also noticed a marked improvement in bone pain and I am much less fatigued than i was before. I have no proof that either of these have anything to do with vitamin levels, but don't think I will drop everything to see if those issues return.

[Cllcanada Top Poster CURE Hero]

If you are considering B12 sublingual then use Methylcobalamin, it has superior absorption.

[virdieblue]

I have to take 5000 ius just to get into the acceptable level! (My oncologist is one of the co-authors of a Mayo Clinic vitamin D study and he okayed it)