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hockeymom01886
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Posted: Dec 16 2009 at 2:29pm |
Hi Tasoulla- My vitamin D level was not checked until after chemo (Nov08). It was actually my request and my onc had no problem doing it. When I found out that I was so low and knew there were many articles written on the link with BC and TNBC, I was pretty upset. My doctor said that nothing had been confirmed about this link thus far. Anyway, my level was checked 10 weeks after the first high dose and not checked again until Oct09. I probably should have had it checked earlier and didn't realize that was the reason that I was feeling so lousy. In Jan10, I will finish the second high dose round and will again have my level checked.
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hockeymom01886
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Posted: Dec 16 2009 at 2:31pm |
I forgot to mention that it said Vitamin D not D3 on the prescription bottle.
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hockeymom01886
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Posted: Dec 16 2009 at 2:40pm |
Krisa- Can you tell me what kind of vitamin D you are taking and how much per day?
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mainsailset
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Posted: Dec 16 2009 at 3:12pm |
hockeymom: PLEASE remember that the script the doctors give is Vit D2. D3 is only available over the counter and it is the D3 that is the best for us. please go back on this thread and pick up the link to the Vitamin D Council and go there as it is a very complete set of information and will give you links to reports that you can then give you doctor about the links of Vit D and breast cancer.
Edited by mainsailset - Dec 16 2009 at 3:15pm
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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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MsBliss
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Posted: Dec 16 2009 at 3:34pm |
hockeymom, it is very distressing to keep seeing this type of negligence amongst the cancer establishment, esp our oncs, that vitamin D is a "soft association" with bc and other deadly debilitating conditions. I was not checked, then when they did check me, my levels were severely deficient. Yet, no one felt the need to tell me this and when they finally revealed it to me, they gave me D2, not D3, for four months! No problem billing me or insurance for the test though, just didn't bother to tell me what was going on. It certainly chafes at my faith in the ability of the system to help me get well.
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mainsailset
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Posted: Dec 16 2009 at 3:45pm |
MsBliss - Amen
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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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123Donna
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Posted: Dec 16 2009 at 4:35pm |
MsBliss and Mainy,
I too was not checked until after chemo and then given the 50,000 unit prescription for D2, which I never took. Instead I've been taking the OTC D3. So glad I have this forum to learn about the importance of D3.
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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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Autumn10182001
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Posted: Dec 16 2009 at 8:51pm |
Talked to my onc yesterday about the vit D... he said no to the prescription, to continue on my 3000 a day, and we will retest in 4 weeks.. he also said that the Zometa that I will be getting once a year, will help bring up the vit d3 number.. I was 12 when tested, after chemo.
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DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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123Donna
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Posted: Dec 16 2009 at 10:11pm |
Autumn,
Keep us posted on your D3 level when tested again. I'm curious to see how much your D3 level goes up.
Donna
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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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mainsailset
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Posted: Dec 17 2009 at 10:30am |
Here's a new article from the Vit D Council webpage that gives a good background on D2 vs D3 and why only the D2 is available by script. http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=54370
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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
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Posted: Dec 17 2009 at 11:36am |
Hi Mainsailset,
i have read the article for Vitamin d and is very interesting.
Vitamin D3 plays an important role but unfortunately doctors don't give the appropriate attention...!
Hockeymom: How long it took for your Vitamin D to go to the appropriate level? Did you had Vitamin D or D3?
All the best to you all!
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hockeymom01886
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Posted: Dec 17 2009 at 12:16pm |
Tasoulla- It took 10 weeks for my vitamin D level to go from 7 to 31 the first time my level was low. My doctor said that this is a very low normal level. They consider 30-100 normal. I did read in some cancer articles that cancer patients should have at least a 60 though. In Oct09, my level was 9 and it will be tested again in Jan10. I do plan on getting an over the counter vitamin D3 supplement since it appears that your body absorbs it more efficiently than D2. My doctor told me that I should take 2000 units (did not say what type of D to take) a day for life after the 10 weeks is up. Right now the prescription that I am taking is for 50,000 units of D2 once week for 10 weeks. (It doesn't say D2 on the prescription but I guess when you get a prescription for vitamin D, it is for D2 which I didn't know until one of the repliers to my message told me. It is a good thing that we can get more educated thru these forums (and vent)!
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dx 6/08 at 52yrs, Stage2B 1/8Pos nodes; TAC/Lump/Rad/Zometa.Diagnosed with Atypical Lobular Hyperplasia 8/10. Had surgery to remove. Dbl mast 3/11. More abnormal cells (ALH)found.
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tasoulla
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Posted: Dec 19 2009 at 3:40am |
Hi all, My mum's doctor wrote her a prescription to take Vitamin D supplement, Megahealth Vitamins- Calcium+ Vitamin D.It is effervescent tablets, and it contains, calcium and vitamin D3. One tablet includes 200IU of Vitamin D and 500mg of calcium and is to be taken twice a day. I don't know but they don't seem to be much of help to increase the level of Vitamin D3 in her blood. If i go to pharmacist and ask for Vitamin D3 do i have to take and another bottle of supplement for Calcium so to be better absorbed?
Thank you to you all!
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mainsailset
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Posted: Dec 19 2009 at 10:47am |
Tasoulla: PLEASE note that here in the states the vit D3 is NOT available by prescription so unless they are different in Cyprus you have gotten a prescription for vit D2. The D3 gel caps are what you're looking for. I also note you don't mention the Mag, and she's GOTTA have that.
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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
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Posted: Dec 19 2009 at 10:55am |
Dear Mainsailset, Thank you very much for your reply and all the advise which is very helpful. I have seen the website of vitamin council, but with doctor's prescription i'm very confused. I will go tomorrow at the pharmacist and i will ask to buy Vitamin D3 5,000 IU softgel, Calcium and Magnesium.Is there any particular brand you have taken and is good you can recommend to me? Three different bottles.Is this correct? My mum's doctor doesn't seem to know much round these and he's very confusing.
Thank you very much and all the best!
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mainsailset
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Posted: Dec 19 2009 at 11:16am |
Tasoulla: I'm no doctor so can't give you advice on the amount for your mum to take that's why the vitamin D council is so helpful. The soft gels come in a variety of doseages, most of us here are taking more than the RDA and I commonly see the women here going with 2,000 IU. Some women here are going with 4 or 5,000 IU but all under the supervision of doctors blood work. Please note the toxicity articles at the Vit D Council website. Whatever she takes must be in tandem with the Calcium and the Magneseium. As I've noted previously in the thread my pill combines 1,000 of the Calcium and 500 of the Magnesium.
I don' know what brands you have over there so would fall short of giving you a recommendation of a particular brand and I'm sure your local vitamin store or pharmacist would have better info anyway.
So, no I use 2 bottles. One for the D3 and one that combines the Calcium & Magnesium.
Good luck with this. ps, chemo is very hard on our bones so this is very important to get going with.
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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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Scott
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Posted: Dec 19 2009 at 9:02pm |
Hi everyone, need your guys help...my beautiful bride had chemo #3 friday & while we were there, I asked the onc about testing my bride's vd level. He quickly agreed & said that in his opinion it does make a difference. Now to the help, we get the results back monday & then meet with our obgyn on tuesday to ck in on our soon to be "warrior princess", so I need to clear it with the baby doc too. Am I thinking right on V3 (gel or liquid form only) along with mag/calcium combo (probably not to exceed RDA)?
Scott
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mainsailset
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Posted: Dec 19 2009 at 9:12pm |
Scott, the Vit D Council suggest going beyond the RDA. Depending on where her levels are you may want to go toward the 2,000 IU range rather than the lower RDA. Since we're well into the winter months with sunshine at its lowest point and she has an extra demand on her system (don't forget chemo is tough on the bones as well and the D/Cal/Mag helps that) it's worth pushing the docs for the most allowable. Hopefully you'll be able to get her D monitored regularly now and that will help considerably.
In case you want a second source, here's the Linus Pauling Institute recommendation of the 2,000
there's lots of discussion on the home webpage, well worth the time of going through it
Edited by mainsailset - Dec 19 2009 at 9:15pm
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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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Scott
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Posted: Dec 20 2009 at 12:36am |
Thank you Mainsailset...just to make sure, 2,000 IU range on the Vit D? How much for the Cal/Mag? Thank you for your help, I know you all have discussed this extensively, but I'm just wanting to make sure I'm clear on the amounts.
Scott
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Scott
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Posted: Dec 20 2009 at 12:43am |
One other thing, start now or after chemo?
Thanks, Scott
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