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Good news with improved viamin D levels

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

I just had my first dexa (bone density) scan since my drs got my D-levels into the normal range, and was happy that all bone density measuresimproved, and moved back into "normal". Several had been slightly below normal, and had decreased over the previous 5 years.

It's nice to know that Vitamin D can help you restore your bones. And it's also supposed to be good for those of us with colorectal cancers. I currently take 10,000iu of D3/day (under a dr's supervision.)

janie1
Posts: 753
Joined: Apr 2011

Alice, thank you for posting this. I wanted to ask you a couple of things about Sloan. I am being treated there. I hope to get to where you are. I perk up when I see a comment from you. I'll pm on friday. Leaving now for chemo.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I raised my D3 to 20,000iu per day about 2 months ago..... My level still only at 35.... going to add a liquid D3 with itto see if that helps. What is a good level for a CRC person to be at?

Jennie

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Probably between 40-90. My D-level shot up quickly after 2 weeks of 20,000iu D3/day followed by 2 weeks of 8,000 iu/day. However, we determined that my maintenance level is 10,000 iu/day, as I started dropping on the 8,000 iu.

My dr sees no difference in the liquid, but I've heard others insist it made a difference for them. Give it a shot, but when you get over 50ng, you may want to lower it again, and see if you can maintain that level on a lower dose.

I use the 5,000 iu gel caps.

Alice

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Jennie, my wife's blood levels rose slightly more than that on D3, not much, although she probably has less intense chemo for "(met) birth control".

My wife started high dose vitamin D at the end of last year (2010), when her para-aortic lymph nodes were starting to act out (later, cut out May'11). First 21-22,000 iu then 26-27,000 iu per day (blood level measured >100 ng/mL, lab limit), now in the 30s for over 6 months. There has been much speculation as to limits on vitamin D3 that are uncontrolled for retinoids (vitamin A, etc), vitamin K2, and calcium, almost as if there is a "vitamin D3 sound barrier" at 90 or 100 ng/mL (225-250 nmol/L), or perhaps 10,000 or 20,000 iu intake per day.

There also has been a lot of research to identify vitamin D analogues to treat cancer at high dose without the degree of calcium absorption and potential buildup with cholecalciferol (D3).

Some doctors have used vitamin D3 at 50,000 iu per day for cancer, even without chemo, and advocate it to potentially slow, stop, and perhaps resorb tumors in advanced cases. This requires active blood monitoring for calcium and good management of daily calcium intake.
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One lung nodule disappeared before her CT scan in late March, and a "liver cyst" almost disappeared by September's CT. Does this have anything to do with the D3? Dunno, she takes a lot of stuff, there is a limited number of possibilities. She has at least two nodules and another liver cyst that I would like to see disappear because the 5FU (as UFT) will lose its tumorcidal property sooner than later (already 16+ months), potentially allowing any cancerous nodes to grow. (Although CIM-UFT-PSK "birth control" against new mets will likely persist, RFA or VATS would be needed)

Our recommending doctor mentioned that the D3 stimulated immune structures to resorb tumors initially swell the apparent size of the cancer lesion and then disappear it. Our surgeon was shocked at the apparent size change between the March CT scan and the physical size of the conglomerated nodes removed in early May. So there is uncertainty as to whether something really good (resorption) or really bad (uncontrolled growth) was happening, we were just happy to cut the high SUV nodes out already late, than later...

We have a recommending doctor, and a locally supervising doctor. Prior discussions, Dec'10, Feb'11. As I said before, such a protocol requires an experienced doctor's protocol and guidance, has other recommendations, and requires active calcium monitoring for careful intake calcium management to avoid potential hypercalcemia.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Should take vitamin D3 in conduction with calcium. I asked my ONC About vitamin D3 and he had not heard about it's effectiveness but did tell me to keep taking turmeric with pepper. I'm taking them all.

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Turmeric is better absorbed with fat/oil. I was advised to add it to anything that I was cooking with some oil.

As for D3 - yes, it is better absorbed with calcium. However, I was strongly advised my my dr at MSK to get as much calcium as possible from food, and not to rely on supplements, which can carry problems of their own.

I don't worry about taking a calcium when I take my 10,000iu of D3 every morning.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

No doctor..not even my Onc ever mentioned anything about D3. Thru research and this board I found the absolute need for it especially for CRC patients. I requested a Vit D level and that first time it was a 5. How do you monitor your calcium? Is there a level this should be at to coincide with the D3?I have always heard too that obtaining calcium thru nutrition was by far the best way.

TANS.... why would RFA or VATS be your first choice and not Cyber or Gamma Knife???? Just curious.........

Jennie

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Calcium levels are measured as part of routine blood work (I believe part of the CMP). I know, because about 7 years ago, they noted a problem with my calcium levels - too high, and found that I had parathyroid disease. That was cured with the removal of a bad parathyroid gland. Calcium levels should be neither too high nor too low. The amount of calcium in your blood is controlled by parathyroid hormone - mine was being released when it shouldn't have been. Parathyroid hormone tells your bones to release calcium into your blood, raising the risk for kidney stones and other problems.

The dr at MSK has told me of the presumed correlation between good vitamin D levels and colorectal cancer survival. My level was 9 when they first tested - extremely low. I'm now holding at 50, a very good level. Work on getting your D level where it needs to be. Any dr worth their salt will notice if your calcium levels are too high or too low.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Vitamin D3 helps absorb calcium, so at very high doses of vitamin D3 either calcium, vitamin D3 or both can be considered overdoses. The primary D3 toxicity is hypercalcemia, hence why anyone with high dose vitamin D3 should have at least one *knowledgable, nutrient experienced* doctor's guidance to do this. Some other nutrients have to be balanced with D3 for cancer too, and checked against any individual chemo regimen for compatibility. This is not a do-it-yourself program.

In our high therapeutic range, we get my wife's calcium checked religiously, along with her CBC and platelets for chemo, every several weeks and need no extra calcium supplements - her other numerous supplements contain enough calcium that we have to control their total calcium content.

The simple facts are that her chemo reduces critical vitamin D3 and calcium levels where teeth and bones will (have) suffer otherwise, along with the low D3 - colorectal cancer issues. We are in an active management situation for body chemistry with various nutrients no matter what, especially on chemo. What's worse is that many doctors can't or don't do this either.
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why would RFA or VATS be your first choice and not Cyber...Knife????
So far, surgeons could get 100% without size restrictions, prospectively surgeries have had less long term side effects than radiation, and cimetidine-UFT etc seem to be effective against metastases associated with surgery. Radiation can remove future surgical options, too. At some point each modality becomes compelling over the others, we have not yet been confronted with a requirement for radiation.

For us, there will be a big concern over radiation conflicts with active chemo (5FU as UFT and cimetidine) and some supplements. My wife is on cimetidine for life, she has had the elevated CA19-9 biomarker, distant nodes, and dramatic response to cimetidine with supplements. Any low dose chemo treatment gaps beyond several days may begin to create windows of opportunity for metastasis. Last surgery, her (special low dose) chemo stopped 24 hours before surgery, restarted 24 hours after surgery. Cimetidine is a long documented option for reflux aspiration prophylaxis during surgery.

Her *knowledgable doctor vetted* supplements, modified for surgery, are a big plus for recovery and we can get some surgeries with low dose 5FU, probably most surgeries with cimetidine. The radiologist later remarked how unusually cleanly her resections healed internally, says he usually sees more internal slop around the wounds.

So far, we don't have the same knowledge support for cimetidine and supplements on radiation tx, either. So Cyberknife would be our final backup for what surgery can't get.

coloCan
Posts: 1956
Joined: Oct 2009

foodconsumer.org/newsite/Nutrition/Vitamins/vitamin_d_1022110615.html

(Don't know to what extent but Dr Mercola is involved with this site;nevertheless......)

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Thanks. Looks like Carol Baggerly is doing something about protecting the average US citizen with vitamin D3, where the Institute of Medicine badly politicized its vitamin D recommendation last year. IOM punted, effectively for 5 more years of cancer and MS promotion.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

they , the doctors can get a new model car or an overseas conference with all the new patients.
. alas.
i feel i maybe getting a touch cynical in my wisedom.

hugs,
pete

coloCan
Posts: 1956
Joined: Oct 2009

........

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

thanks alice,

the science is convincing and yet most oncologists let us down.

on this retreat i have been giving out a few drops here and a few drops there.
i have 1000iu drops. i call it givig out little drops of sunshine.
they advocate d3 on this retreat i am on. only 2 of 36 are on it.
how lucky am i to have found this forum.

this post should raise peoples awareness.

tanstalf advice about d3 being supervised is great and tracking calcium levels. my doctors however will not write the scripts for the tests. alas i have to do it myself.

hugs and peace to everyone. especially the d3 droppers.

i find the drops so much easier than the pills. 10 drops a morning on my palm and a lick and its done. gee thats just so hard, maximum time 20 seconds a day and a few cents.

its a cheap insurance polcy against recurrence and its so easy i could cry for all the others crcs not doing it.

hugs,
pete

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Pete, I'm very fortunate to go to a major cancer center which includes Integrative Medicine of all types into its programs. I got on the Vitamin D bandwagon when I saw they were doing a research project on Vit D and Stage 4 Colon Cancer, and I knew that 24 months into trying to raise my D levels using standard means (prescription D2 - 50,000-100,000 iu/week) my levels were not coming up.

I wasn't eligible for the research (not colon cancer), but the lead MD in the project took me on as a patient, and guided me through the doses of D3, bringing my levels to normal in under a month.

It is great to be working with people on the cutting edge of the research.

hugs back to you!
Alice

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