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tasoulla View Drop Down
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    Posted: Dec 11 2009 at 5:45am
hello all,

My mum started her second cycle of dose dense( 4 taxol every 2nd week), and she had the simple test to see the Vitamin D3 levels in her blood and today she found out that she has very low levels of Vitamin D3 in her blood.
The question is, is it better to start now while she's having chemo the Vitamin D3 supplements, or after when she will finish chemo.
Does any of you had this test while having chemo or after chemo?
I'm afraid that if she will start having the supplements now that maybe will affect the activity of chemo.
Doctors don't give us enough info on this and they don't inform us properly , and it seems very serious not to have right levels of Vitamin D3.
I have discovered this alone through research and i personally recommended to have this test.The doctor didn't give us any info and they didn't advise us to have this simple test.
Can you please tell me if any of you had this test, and if yes when did your ocnologist recommended to start the Vitamin D3 supplements?

thank you all of you and wishing you all the best!!!
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 9:54am
Dear Tasoulla,

My wife did not get tested either although her current onco has been quoted in an article to be very pro Vitamin D testing! In the absence of any direct randomized trials oncos hesitate to have patients have any vitamins or supplements while they are on chemo. That said, once we asked all oncos including wife's current onco - said Vitamin D in the form of 5,000 IU D3 is ok to take daily. It is available OTC. A little hard to find 5,000 dose but we found it on vitaminshoppe.com. Don't let the onco write a prescription Vitamin D, it is usually for D2 and at 50,000 IU to be taken once a week.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 10:11am
Tasoulla:  I had my 2nd D test taken while on a trial and was 4 weeks into it. It came back very low and the onc immediately wrote me a script for a D @ 50,000 IU (unfortunately it was the D2, lesson learned) but in discussions with him he brought up that the D is the only vitamin that actually enhances chemo efffacacy so it was important to get my levels up! The D also enhances the effectiveness of radiation as well.
 
Beyond the interation with chemo, you & she have the whole body to consider, the D helps the body accilmilate calcium and is good for bone health and as we have learned, chemo is very hard on our bones so the D can be a good up front warrior for us while undergoing chemo. It is also good for the heart and is generally seen as the traffic cop which directs many of our 'components' to work at their optimum level, not to mention it helps our immune system.
 
So, not to critique unklez comments, but rather to add a different experience.
 
Please don't laugh, but here is a link I just found that indicates adding high dose D for prostate patients undergoing chemo,  http://www.docguide.com/news/content.nsf/news/8525697700573E1885256BC000587596 


Edited by mainsailset - Dec 11 2009 at 10:13am
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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tasoulla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 10:50am
mainsailset? is it better to take Vitamin D or Vitamin D3? What Vitamins your oncologist recommend you and did you started them while having chemo?Do you know if Solgar Vitamin D3 is good or can you make a better recommendation?
My mums oncologist didn't recommend anything about all these.
I didn't understand what exactly you mean about D2.

thank you and waiting for your reply,
tasoulla

thank you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 11:08am
Tasoulla:  here is the link to the Vitamin D Council which I have put into my 'favorites' list and check daily. It will do a much better job than I can of describing the difference of D2 and D3 and will tell you why we TNBC patients should be using the D3.
 
Often you'll find that a D blood test will come back and it will be lumped together in a single number, vs some labs will break out your D3 and D2 in the results. Regardless, it's the combined number that is important to you.
 
Women who have TNBC are more likely to have lower D levels at the time of dx than other bc patients. D is very important to us.
 
I use a Vitamin D3 gel cap & I combine it with a Cal-Mag pill daily. I did not have luck with the liquids but I see many members here have had good luck. The only way you really know if you're making headway is if you have the Vit D included in your mom's regular blood work.
 
Your goal is to get your mom's levels above 50. Your onc may disagree with that, but read the Vitamin D council site carefully and you will likely find that I'm undersuggesting...there are now opinions out there suggesting that cancer patients have a higher level, from 60-90.
 
Here's the link   http://www.vitamindcouncil.org/ 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 3:02pm
Tasoulla,
Yes Solgar D3 5K is good.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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tasoulla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 3:34pm
thank you unklez and mainsailset.
is it better to take the vitamin d or the vitamin d3 or and both of them?

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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 4:20pm
Dear Tasoulla,
D is of 2 types - D2 or D3. Take D3 for now.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 6:59pm
You want D3.  If it just says Vit D, make sure the ingredient is Cholecalciferol, which is D3.

I also didn't get tested until after chemo treatment ended.  I wish I would have known the importance of D3 and tested at dx.


Edited by 123Donna - Dec 11 2009 at 7:01pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (1) Thanks(1)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 3:31am
I was tested, several months after surgery.  My level was 16.  Problem:  no one told me that I had been tested or that my level was deficient!  Not my surgeon, or my oncologist.  No one even bothered to update me or make a recommendation.  They were happy to run the test, bill my insurance, but it was not important to let me in on it.  When I found out what had happened, my onc prescribed D, but didn't tell me it was D2.  So I was taking D2 for 4 months, and not corrected for it.  It probably took 7 months to finally get my levels to an adequate level due to this delay by my health providers.
This was one of the reasons why I decided to take control of my health.  Vitamin D is so critical, and for some reason, the ones who are supposed to be taking care of us are simply not interested in this critical issue.
Sorry about my cynicsm, but every time I think about this issue I get worked up.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 9:40am
Well they don't make as much money if more and more people just get OTC D3, do they?



Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 10:06am
unklez, as usual you are succinctly correct!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 11:10am
i have talked to the oncologist and he recommended to take some tablets which include both calcium and vitamin d3. he told us that it is better to take vitamin d and calcium together and not vitamin d3.
i'm confused now, as the blood test showed deficiency of vitamin d3.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 11:19am
MsBliss,

I have my 3 month post chemo followup later this month.  I'm going to ask my onc if I was tested at dx.  I don't think so because when I told her I tested myself (using the in-home test ordered from the Vitamin D council website) she acted surprised to learn my results were so low (19).  It will be interesting to know if they knew at dx and if they did, why wasn't I told.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 11:19am
Tasoulla, please do go over to the Vitamin D Council webpage that I put up the link to. It is important to take the Vit D3 in a gel cap form and that you simultaneously take Calcium & Magnesium. I take a gel cap of D3 daily with food and a big white pill that combines the Calcium & Magnesium together for me, it's called a Cal-Mag. The magnesium is every bit as important as the calcium.
 
I think I would confuse matters if I gave you the manufacturer's name at this point as I don't know what brands are available to you in Cyprus and don't want to create a hardship. But please get the GEL (or some ladies will tell you the liquid) don't do a plain powder pill for the Vitamin D3.
 
PM me if I can help out.  Just in case, here's the link again, just left click on it and then make use of the menu list on top lefthand side of page  http://www.vitamindcouncil.org/


Edited by mainsailset - Dec 12 2009 at 11:21am
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 12:18pm
Tasoulla,

You should take:

D3 5000 IU
Calcium 1000 mg
Magnesium 400 mg

Ideal to take these in liquid, fizz or gel form. Powdered, tabs or capsules are ok too but they may be harder for you to take and absorb.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 12:46pm
Whoa Nellie.   I haven't seen the data yet, but I heard from someone that taking a lot of vitD if you are NOT very deficient could be dangerous (as in, increase cancer rates).  Don't assume that any substance that acts as a growth factor is safe at high doses.   Be cautious.   Those of you downing this stuff like it's water whether or not you have low D levels should reconsider.    The guy I talked to (hearsay, I know) said that there was a biphasic response.  He said that for women who are not severely deficient,  there is a biphasic risk curve, meaning a dip of risk in the middle of the range in ingestion and higher risk on the edges.    I'll see if I find him again and locate the source. 
 
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 12:54pm
Denise,

Please try to get more info. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 4:39pm
Exactly--Vitamin D2 is extremely cheap to make but they charge 10 times more for it than D3.  It is criminal.

Originally posted by unklez unklez wrote:

Well they don't make as much money if more and more people just get OTC D3, do they?



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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 4:47pm
And I should add that the D2 from my pharmacy has a monograph printout that comes with it that says:  "Also called Max D3"!!!!!!!!!!!!!!!!!

Originally posted by MsBliss MsBliss wrote:

Exactly--Vitamin D2 is extremely cheap to make but they charge 10 times more for it than D3.  It is criminal.

Originally posted by unklez unklez wrote:

Well they don't make as much money if more and more people just get OTC D3, do they?



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