Vitamin D Status
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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=1304
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Topic: Vitamin D Status
Posted By: sparrow
Subject: Vitamin D Status
Date Posted: Jul 17 2008 at 2:44pm
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Since there is so much interest in Vitamin D, not only in relation to breast cancer but other diseases as well, I thought it would be interesting to see if we are getting our blood levels checked and what those numbers are looking like. The test to be asking for is the 25(OH)D3.
When you vote, I would be interested to know if your doctor has advised supplements or what other recommendations are being made to you. Just as it is not good to have a Vitamin D deficiency, it is also dangerous to have elevated levels that could be toxic to your body. It is best to be tested and under medical supervision when adjusting levels.
Please share your thoughts and concerns about this topic. ------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Replies:
Posted By: trip2
Date Posted: Jul 18 2008 at 6:23am
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Sparrow I have gone thru bc twice and I had two different Oncs whom never brought up the subject of Vitamin d testing. Now my Onc may say something since it is is all over the news. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sparrow
Date Posted: Jul 18 2008 at 2:19pm
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Hey Pam, I wouldn't want to bet on your oncologist now having more interest in Vitamin D!
 On my first visit to the oncologist a few months ago, I asked about Vitamin D testing. Keep in mind this oncologist is in a major university setting and also an assistant professor. I was told that because there is no DIRECT LINK to breast cancer, Vitamin D testing would not be done. Also, that insurance would most likely not pay for the test. At the end of the visit, I firmly stated: "I WANT the Vitamin D test." The test was done. I knew it was necessary for me, for my peace of mind! When I saw my internist for a yearly physical, he was most eager to do a Vitamin D test. He loves tests!!!
 He will check my level at least twice a year. So now I'm happy!I trust and have great respect for my doctors, but there are two of us in this doctor/patient relationship. We just need to remind them periodically!
------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: CarynRose
Date Posted: Jul 19 2008 at 2:49am
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It was my endocrinologist who gave me the test. And, even though I was within the normal range (36), he felt that with hx of cancer, I should have a higher level. He prescribed a weekly supplement for me and the goal is to get me to at least 50 (my goal is low 70's). The cruise we're taking in August should give me a chance to absorb more of that Vit. D. How 'convenient'. LOL ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Jul 19 2008 at 4:03am
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Oh CarynRose a cruise!
Girl you so deserve something wondeful like that. You should get lots of vitamin D sitting out by the pool. I'm so happy for you, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sparrow
Date Posted: Jul 19 2008 at 4:20am
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CarynRose, Hey! I think you've hit on the perfect prescription for low Vitamin D....a cruise!!!
Why didn't I think of that! I hope you have a wonderful time!I think you'll find this interesting.....My husband is diabetic and recently had a check-up with his encocrinologist. At the end of his appointment, I asked the doc about his views on Vitamin D. He had just attended a conference and said that a great deal of focus was given to Vitamin D. He predicts in the next 10 years, Vitamin D will be like cholesterol has been over these past 10 years. He is now checking levels on all his patients and has found only 1 in 30 of his diabetic patients to be within normal limits! He went on to say that his own level was about 24, and his goal was to raise it to 50.
I was diagnosed early Jan. of this year. About 3 months prior to diagnosis, I had quit taking my Citracal (calcium plus Vitamin D 630mg/400iu, 2 caps three times a day with meals, and a multi vitamin with 800 iu vitamin D.) After diagnosis I got right back on these supplements, and at the end of May, my first Vitamin D test was 33. I have made a point to get some sunshine every day (not hard living in Alabama!) and my Vitamin D level now, done by the internist mid July, is 58! Yeah!
------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: CarynRose
Date Posted: Jul 21 2008 at 4:13am
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Your husband's endocrinologist and mine must have attended the same conference. I'm glad to see conventional medicine coming forward.
Caryn
PS -- I went to a pool party yesterday and purposely spent time in the pool in the sun with no sunscreen. Not for very long -- I didn't even get color -- but ooooh did it feel good. ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: sparrow
Date Posted: Jul 21 2008 at 2:48pm
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Caryn,
I bet our endocrinologists did go to the same conference! So glad some speaker got them interested in Vit. D. Wish these oncologists would get on the band wagon now. Maybe others on the forum will tell us what their oncologists and other doctors are saying when asked about Vit. D. I don't see how they can keep ignoring the subject when it is all over the news and in the journals.
I sat 15 minutes in the sun today, out in my herb garden. The temp here is 101!
 I did have a glass of iced tea to get me through....but a dip in a pool sure would have been nice! Will be anxious to hear how your next Vit. D test comes out! ------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: Nancy
Date Posted: Jul 29 2008 at 6:56am
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hey sparrow,
Ronda had asked me to check in with my D levels once they were back, even though it is Lori who was dx with bc.
I am happy to report that my levels are 57!!!
I could not believe it. My gyn just called a while ago. However my bone density scan while good on the spine, is still weak on the left hip. I am on the generic of Fosamax, and have been for years, and I drink milk and eat cheese daily.
I am going to do as Ronda said she was going to do on the vitamin D...to increase it in the Winter months by 1000 extra per month, every month. I have been sitiing in the sun every day (that we have sun), and taking 1000 iu's per day. Hubby has been taking it also, and his psoriasis is the clearest it has been in 30 years!! All this from D!
Lori was having her levels done, and I am anxious to see what hers are, considering that she is out in the sun every day running, etc., and she has been taking cod liver oil and D3 for quite a while now.
Thanks Ronda!!! Love Ya!!
Hugs,
Nancy
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Posted By: sparrow
Date Posted: Jul 30 2008 at 2:36pm
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Nancy,
Way to Go, Nancy!
 Having a Vit. D level of 57 is great news! I read recently a level of 60 is what most life gaurds would be at the end of summer. (I would imagine that would be without supplements and sun only.) Now if we can just keep these levels up during the winter months!Has anyone read or been told how often Vit. D levels should be checked? I'm going to try and ask my husband's endocrinologist what he would advise....but won't see him until Nov.
Nancy, do let us know Lori's level. It will most likely be just fine, as much as you say she spends outside with her exercise program.
------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: Nancy
Date Posted: Jul 30 2008 at 3:12pm
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http://www.vitamindcouncil.org/PDFs/diagnosis-vitdd.pdf -
Really gals!!!
Someone help this old lady out!! What am I doing wrong? When I try to get an article I get it all in red or whatever color it is.
Any way, this article is what Ronda was talking about, as to the over-the-counter D3, cholecalcifero, and the prescription of 50,000 iu's that the docs are prescribing.
HELP!!!!!
hugs,
Nancy
http://www.vitamindcouncil.org/PDFs/diagnosis-vitdd.pdf
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Posted By: sparrow
Date Posted: Aug 01 2008 at 2:45pm
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Nancy, thanks so much for the link at the bottom of your last post. I printed it off and just finished reading it...lots of good information. We all need to be asking our doctors to check our Vitamin D levels! I hope others will take the time to read the article. Sooooo Nancy.....You're literally "SEEING RED?" Maybe you're just all stirred up over the Vitamin D issue!!!! hehehe Well, that's my best guess.....sorry, no computer help here. ------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: Nancy
Date Posted: Aug 12 2008 at 1:08pm
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Ladies,
Lori called earlier today. They are in Maui, and she called her med onc for the results of her D levels.
I am happy to report that her levels are 73!!
However, get this....the nurse said that the onc wanted her to STOP taking the D3!!!!!!!!! They said that the normal levels are supposed to be between 23-70. we know that is not the case. Ronda said they are supposed to be between 70-90.
As Lori said, apparently he is not up on the D levels and where they are supposed to be. She was sending him the article from the Vitamin D Council.!!!!!!!!!
As I have told you before, she is taking cod liver oil and D3, which together is about 4500-5000 iu's per day. She said there was no way she was going to stop taking it, after all the articles she has read lately. !! Guess she will educate him!!!
Maybe we should send him all the postings from here on this site also?
 Hugs,
Nancy
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Posted By: BrendaF
Date Posted: Aug 12 2008 at 4:43pm
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My onc never brought up testing for vit d, but I asked that it be added when I had bloodwork a couple of weeks ago. It was low at 23. Then, when she prescribed the supplement, I was specific to ask for d3, from what I've read. She said she didn't think it mattered, but I understand that d3 is best. I'm on 50000 units per week for 8 weeks. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: Nancy
Date Posted: Aug 12 2008 at 5:40pm
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Brenda,
From what Ronda has said and from what the Vitamin Council on D has reported, the D3 is the one to take. It is the cholecalciferol.
The one that you are on from your doctor is not as good. If you look at the article in the post I made, at the top of the page....in red., it has the information. Can you imagine Lori's onc telling her to stop taking it? I don't think so
 23 is low, very low. D3 aids the immune system and promotes strong bones. I was very glad to see that Lori's levels are good. Once you are off of this prescribed dosage, after 8 weeks, do they plan on doing your levels again? If I were you I would ask for it. Then see if that 50,000 has brought it up any. If Not then perhaps you can convince your doc to read the new info on D. As Ronda has said, most docs are not up-to-date on this. D3 is the one. I bought mine at Walmart, and it is a twin pack of 100 tablets each bottle, 1000 iu's per tablet. They are $6.48. Spring Valley is the name on the bottle.
Good luck with presenting your doctor with an up-to-date on D.
Hugs,
Nancy
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Posted By: BrendaF
Date Posted: Aug 13 2008 at 10:29am
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I did get the script for D3. I take one pill 50,000 IU's once a week for eight weeks, then I will take a lower dose daily. I might go ahead and also take 1000 units a day in the meantime. Yes, 23 is very low, especially for late July!!!!! Can't imagine what it might have been back in january! ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: BrendaF
Date Posted: Aug 13 2008 at 10:35am
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Ah - I had skimmed over the article earlier, but I see where it says that D3 is not available by prescription. Wrong, or outdated! I definitely have D3, and it is by prescription. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: Nancy
Date Posted: Aug 13 2008 at 12:05pm
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Brenda,
Read page 6 of that article. Lori had researched this and also, this article is very recent. It says...
"However, ergocalciferol is not human vitamin D, it may be a weaker agonist, it is not normally present in humans and its consumption results in metabolic by-products not normally found in humans. It is also two-to-four times less effective than colecalceferol in raising 25(OH)D levels."
Just repeating what Ronda had said many weeks ago. Does your script say colecalceferol? Also, may I ask what the cost for this is?
I posted some more links on another topic started by Skippy123.
I just think it is so interesting that when I was a kid, we never heard of Autism, and it seems as though we were so much healthier. No sunscreen, and we took cod liver oil alot. My Mom was a RN, and she was always telling us that we had to get sun. Guess they knew better then than they do now.
Hugs,
Nancy
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Posted By: BrendaF
Date Posted: Aug 13 2008 at 1:55pm
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Yes, colecalceferol. Insurance would only give a month's worth, so I got four pills, and my copay was ten dollars.
I had just bought a bottle of 1000 IU caps, and I think I will take one a day as well.
Reading more in the article, I saw that theophylline can lower D3. I have been taking that for my lung / diaphragm issues since june, so maybe that could be part of why I'm so low. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: krisa
Date Posted: Aug 13 2008 at 1:59pm
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. |
Posted By: Nancy
Date Posted: Aug 13 2008 at 2:33pm
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Krisa,
How low are your levels?
Nancy
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Posted By: krisa
Date Posted: Aug 13 2008 at 4:03pm
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nancy,
my current level is 21.5
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Posted By: Nancy
Date Posted: Aug 13 2008 at 4:56pm
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Krisa,
Lori had done research on D also. You cannot get all the D you need or require for a healthy immune system from foods that you eat. That is why the need for the sunshine, and most important the supplement of D3.
If you read the articles I have posted, perhaps that will answer some questions you may have. There are quite a few, and each has links to other topics on D3.
21.5 is low. I thought mine were good at 57, but then Lori came in at 73. I will start to take 2000 iu's per day in about a month. We get so little sun here in Altoona, PA. Have had quite a bit lately, but that is not the norm.
Hugs,
Nancy
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Posted By: Nancy
Date Posted: Aug 14 2008 at 1:36pm
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Ladies,
You really have to read the article that I posted a link to. I know that Ronda had said she was wrong as to normal D levels. She had said they are between 70-90. Then stated that she was wrong, and levels are 50-70. However, if you read on page 3, it states:
"Natural levels, that is, levels found in humans who live or work in the sun, are ~50-70 ng/ml - levels attained by only a small fraction of modern humans".
Which means that Ronda is most likely right once again!
AHHHHH! You gotta love that gal
Hugs,
Nancy
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Posted By: Nancy
Date Posted: Aug 26 2008 at 4:15pm
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Just for Lisa....bringing this forward
nancy
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Posted By: Lisa L
Date Posted: Aug 27 2008 at 2:11pm
Thanks Nancy! I think I'll push the issue with my docs. I am 3 years out from dx, I wonder if that matters?  ------------- Dx 8/05 age 43 mast & lat flap 10/05 Triple neg BRCA neg IDC 4.5cm rt br 0/1 sen node 6 A/C 5 Taxol, 25 rads 11/05-6/06 Central Illinois Currently NED |
Posted By: Nancy
Date Posted: Aug 27 2008 at 3:35pm
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LisaL,
I am no years out from dx and I really wanted to know. I have Osteopenia, and have been on Fosamax for years...now a generic. I have pushed for all my daughters, my sister and everyone I know to have their levels checked.
Nancy |
Posted By: Terri
Date Posted: Sep 04 2008 at 6:45am
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Hi Ladies,
I just got my most recent Vit D level back. In Feb (during my last chemo) my levels were 47. Now, 4 months out of tx my levels are 57. My PCP did the tests for me because I asked him to. My onc said it was a waste of time during chemo and blew the whole subject off!
My PCP said normal ranges from 20-100. What?? Big range!!
Anyway, I just wish I knew what it was when I was dx but it had to have been decent since it was 47 during chemo.
Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: BrendaF
Date Posted: Sep 04 2008 at 11:38am
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Mine was 23 and the lab report said the low limit of normal was 30. I can't imagine how low it might have been last winter. The 23 was in early August. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: cg---
Date Posted: Sep 04 2008 at 12:00pm
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I don't think so Terri 10-100 - what a huge range......I thought it was 50-70.
I am awaiting my results...I will let you know.
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Posted By: NancyJane
Date Posted: Sep 09 2008 at 8:59am
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Hi Ladies:
I am so thankful to you all for the information you post to this site. I would have never thought about my vitamin D levels but for reading this thread. So, I asked my surgeon to order the test and I just received my results. I live in the Florida Keys and am in the sun ALL the time. My level is 15!!!! I can't believe how low this is.
I wear sun screen constantly. Since I read this thread, however, I have been intentionally allowing a 30 minute per day sun exposure without sun screen. Hopefully this will boost my levels. I plan on taking a suplement too once I clear it with my Dr.'s. Wow. This is mind blowing.
I have a friend who is a PHD in pharmacy and we were talking and I told him about this cancer/vitamin D connection. He was aware and encouraged my idea to increase sun exposure and supplemts including a calcium supplement. He was shocked at my low level and thinks I should have a bone density test done even though I am only 41!
The 6 months before my diagnosis were some of the worst months of my life re: stress and general unhappiness borderline depression. Combine that with BRCA+ status and a vitamin D deficiancy, no wonder I developed breast cancer.
Well, I am addressing all of these unhealthy contributors as best I can. Thank you again for raising my awareness!
------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: Nancy
Date Posted: Sep 09 2008 at 2:35pm
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Nancy Jane....Nancy Jane...Nancy Jane!! (My Mom and Dad would repeat my name just like that when I did something that displeased them)
15!!! Florida Keys! Sunscreen!! Toss the sunscreen sweetie!
The sunscreen has chemicals in it also. I look at it this way...why would I want to put chemicals on my skin. Did you read what Lori's levels are? 73! She has never used sunscreen in her life. I will be curious as to what your doc tells you to take. I am taking 1000 iu's per day, and Lori takes about 4500-5000 per day. If you read the links that I and others have posted as to toxicity levels, it is very unlikely that anyone would have a problem taking 30,000 -40,000 iu's per week.
Read the post from me as to the "normal ranges for those living and working in the sun".
Lori had felt her "lump" a few years ago. She and I were talking a few weeks ago as to the D3. She said that during the Summer months that the "lump" would be smaller. In the Winter, when she felt it, it was bigger. This was not her imagination. So, apparently the D that she gets as much as she can in the sunny times of the year boosted her immune system, and the cancer stopped growing, possibly shrinking?
It would be interesting to know when all you gals felt your lump, and the rate at which it grew, and what time of the year it was. For you, living in a sunny climate, one would think that your levels would be normal. You would have to be in the sun constantly as the article states. We do not get the amount of D3 that we need, form the sun alone. We have to supplement it daily. We can't get all we require from the foods we consume either.
We live in Central PA, where there are days that go by without seeing the sun. I am stocking up on the D3 as I just know they will start to raise the price. Not too much as I really want it to be fresh. In the Fall, and then again in the Winter, I will increase the iu's daily.
Get that beautiful Florida tan that I hear so much about!
Hugs,
Nancy
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Posted By: NancyJane
Date Posted: Sep 09 2008 at 2:51pm
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Nancy (I can't beleive you are Nancy Jane too, or the number of Nancy's on this site. I wonder if our name is a BC risk factor! ):
I lived in fear of skin cancer because of my Father's melanoma. I am fair skinned, blond hair, blue eyed, so I took great care to protect my skin. Go figure! I guess my Mother's ovarian cancer won out.
I plan on using alot less sun screen. I have a great dermatologist and have been using non-chemical sun screens for years (zinc oxide based). These are "heavier" and only come in cream form, not sprays or other light weight application. They are highly effective (apparently), however. ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: Terri
Date Posted: Sep 10 2008 at 7:12am
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Hey Connie,
My dr said normal was 20-100, not 10-100. But that still sounds like such a wide range!! When he went over my results he said the 47 in feb was in the normal range. My more recent test was 57 in august. I didn`t bother asking how much D3 I should be taking b/c he wasn`t really up on the research. I`m lucky he was cooperative enough to order my D testing at my request since my onc wouldn`t do it!! So I guess I will continue taking 2000 IU per day and getting sun as much as I can.
Did you get your results yet?
Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Nancy
Date Posted: Sep 27 2008 at 9:48am
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bump for lalala1000 ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: tigojo
Date Posted: Oct 13 2008 at 4:02am
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I had blood taken last week, and my onc. had Vit. D checked. Mine WAS ONLY 14! I am now taking Vit. D supplements. He will check this monthly for me and see how it goes.
I mentioned it to the PA and the doc on my last visit. They were VERY cooperative to check this, and doc seemed pleased that I was doing my homework and learning more about my disease, etc.
 I would suggest that everyone get tested and stay ontop of this. Maybe there is a link, maybe not. Either way - just a good health fact to work on!
Tig
Dbl mast. 5/08
Class 3/Stage 3
2 nodes
50 yrs.old at diag.
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Posted By: tigojo
Date Posted: Oct 13 2008 at 4:04am
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The print out from the lab who did my Vit. D test shows 34-100 is normal for optimum health.
mine was only 14
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Posted By: Nancy
Date Posted: Oct 13 2008 at 6:02am
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Tigogo,
Just this morning on MSNBC, they were saying that they are now recommending that children take the D3 in 400 iu's per day. The word is definitely getting out as to the importance! By the way, you have a great doc, and since you are proactive about your health, I'm sure you will get those D levels where they should be.
There is a link on the new forum "TNBC News, Resources and Tips" as to the correct test, and on page 2 of this topic I have a link from the vitamin D council.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: tigojo
Date Posted: Oct 13 2008 at 6:07am
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I did not see the show, but my doc told me to buy the D3 formula, with choleclciferol, as it is better absorbed than the D2 type. I am taking a multivitamin with 800 IU's, plus a 1000 i.u. every other day, then daily in week 2. They will re-check in a week, then at two weeks, then monthly, if things go as planned. I am going to try to get more sunlight without screen~! I am outside a lot but have used sunscreen for years, avoided mid-day sun, worn protective clothing, etc. due to a VERY large family history of melanomas. I have not (yet?) had skin cancer. With no family history of BC, I always thought I would get skin cancer, not this!
Tig
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Posted By: Nancy
Date Posted: Oct 13 2008 at 6:25am
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Tigogo,
If you want links to more articles, go to the TNBC Talk forum and "Vitamin D may help patients Survive cancer", page 1, posted by Skippy123. I had posted many articles ther on D. Yes it is the D3 which is what we all need to be taking.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: ReneeST
Date Posted: Oct 15 2008 at 11:31am
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Oh my! I'm a 10. Whooo hoooo!
Oh wait, that's my Vitamin D level. Finally got the results back yesterday - the laboratory is backed up on all the Vitamin D testing.
Another pill to add to my regime. The sun in the Pacific Northwest doesn't shine all that much in the winter; and I avoid the sun in the summer because of certain medications and my fair skin.
------------- 56 yo Seattle, WA Stage 1, Grade 3, 1.3 cm IDC Lumpectomy Aug 2008 SNB neg;4 rds Taxotere & Cytox. BRCA-2 Variant. 16 Rads Jan 2009 "Canadian Study" www.reneesbumpintheroad.blogspot.com |
Posted By: Nancy
Date Posted: Oct 15 2008 at 2:02pm
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Renee,
Oh for pete's sake woman.......you are a 10!!! You have always been a 10!!!
I bet that every woman on this site and most in the world are a 10, it's just we allow a man to rate us on the scale sweetie! What the h--- do they know?
Ok now back to the D! You must not avoid the sun, and why don't you ask your doc who ordered this test to put you on that mega dose and then test you again?
Gee, I wonder why the labs are backed up for testing for D?
It's because Ronda's message finally got through to the world!
Did you hear that they are now saying that all children should be taking 400 iu's of D3 every day? That was on MSNBC on Tuesday I think. I think that 1000 is what they should be taking. How many kids are in the sun every day? Very few.
Hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: sparrow
Date Posted: Apr 12 2009 at 11:58am
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Hello Everyone,
Just wanted to check back in on this thread. I have had computer problems for several months and have missed checking in on the forum. I'm glad to report that I now have a new computer and high speed internet....feel like I'm now in the 21st century.
I'm now past the one year mark! Praise God! I'm still taking my Vit. D and 4 mo. ago my level was 80! Am currently taking a total of about 4000 IU/day of Vit. D3. My level is checked every 4 months by my oncologist at Vanderbilt in Nashville. I am to call tomorrow for my most recent result. I do tan in a super tanning bed about 5-10 min. once or twice a week. I'm managing my own dosage and making sure I'm checked often. It is frustrating that WE have to educate the doctors (for the most part!)
It concerns me that this poll shows only about 50% are checking Vit. D levels. Why are some not getting a Vit. D check??? I don't understand.....we have to do everything that might help us!
God Bless ------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: Nancy
Date Posted: Apr 12 2009 at 2:09pm
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Hi there Sparrow,
Long time no see sweetie
 I do not know why some are not having the D levels checked, and also I cannot understand why the doctors are not more up-to-date on this. 80....WOW!!! That is right where you should be. Anyone dx with cancer should have D levels of around 80. Connie's were 79 and she was the top but now you are! They say normals should be between 60-100, but people dx with cancer....in the 80's. You know what I cannot understand also? These doctors are telling the women that norms are 30-50. Boy they sure need to be getting educated! My water aerobics instructor has been taking 1000'ius at my insistance since Nov. , and when her doc took her levels she was only at 26. She started her on the 50,000 then off for a few days and then 4000 per day. Her GYN/ONC is soooo insistant that everyone take D3. She said that was the most important vitamin that anyone can take, and even if they took nothing else.
Why are people so afraid to take the 4-5000 a day? If you are in the full sun, with as much of your body exposed as possible for 20 minutes, then you get 10,000. What people fail to realize is that the body does not store it. I send a pm to every new member, with all the info on D3, and tell them how important this is, and to have their D levels checked. I have been doing that for probably a year or so. You can not overdose. You would have to take 100,000 a day for a long time to overdose. I have posted many many articles on the D3 in the news forum also. This is such an essential vitamin. Lori's levels are 76, and she probably needs to get them up a bit more.
I have my entire family on them. However, when my daughter and I were taking her son back to college 2 weeks ago, I asked him if he was taking the D, and he said he forgets, but they are sitting on top of the microwave. He is the one dx with leukemia at 3. Well, you can imagine the conversation after that statement.
 Hey this Meme does not mince words!! I even got him the 2000 iu tablets. He really should be taking about 4-5000 a day, as all he does is sit at a computer all the time. Oh well, I try...Don't be such a stranger, and I bet the new computer is a dream...and the high speed internet....whoa!!
But most of all...the one year mark...congrats!!!
Lori will be 2 years in June...from dx.Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: sparrow
Date Posted: Apr 13 2009 at 2:01pm
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Hi Nancy,
I can just imagine that conversation with the grandson! Maybe he'll remember to get it down from the shelf and take it! On a recent visit to my husband's endocrinologist, (who attended a big conference on Vit D, checks all his diabetic patients and encourages them to take Vit. D), I asked him how HIS Vit D level was doing. (I had told him mine was 80). He backed up against the wall and started telling me he'd run out of D3 and just had not had time to get to the store, new grandchild just born, yada, yada, yada. It really tickled me.....we ALL have our excuses, even the doctors. My husband goes back in about 3 mo.'s and I'll ask him again! We ALL need each other to keep us on track.
Had blood work drawn this past Tues. Called today and they said my Vit D level had dropped..............to 79....... I'll take it! I did get a sinking feeling when she said it had dropped, but I can handle one point. I'll just keep taking my 4000IU of D3 and soon will be able to get some sunshine. Until it warms up, I will do 10 min/once or twice a week in the super tanning bed. I'm always careful to build up to the time and never burn.
So glad Lori is doing well. I know June will be a big celebration for your whole family!
God Bless. ------------- 60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo |
Posted By: Yankeespie
Date Posted: Apr 16 2009 at 3:11am
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Hi Sparrow Nice to meet you, just wish it was because of different circumstances I was wondering if you could pm me sometime, I too havechosenn not to do Chemo. Whatprotocoll if any are you following?
Thank you in advance
Blanket of Huggs,
Bev ------------- Dx 2-10-09 Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
Posted By: lavender
Date Posted: May 23 2009 at 10:50am
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I was 39 but that was after taking 2000iu a day for a couple of months. Now I am not sure if the values are the same here in canada. I was insufficient. I am taking 50 000 iu / once per week now and just had my blood work done. so I am hoping it will be a lot better. I was up to 51 with 5000 iu but they want it to be over 100.
It seems to take a long time to get the numbers up. ------------- Lavender DX Sept 07 Oct 07 Partial mastectomy 0/18 nodes T2a N0 grade 3 TN Mar 08 completed 4AC& 4T Apr 08 mastectomy with expander |
Posted By: Nancy
Date Posted: May 23 2009 at 12:01pm
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Lavender,
So great.... in fact fantastic that they want it up over 100.
Finally someone who understands the importance of the D levels. Ronda says that when you are about to have your D levels tested, that you are to go off the D for a few days, and that way they get the true levels. Are you taking magnesium with the D3, as that is a must? You really need to take Selenium also, and the Turmeric, but the ground root of turmeric. Just put about 1/4 to 1/2 teaspoon on eggs in the morning, or on salads, or in your soup. Do not cook it in the foods, just add it with a wee bit of olive oil and black pepper, as that increases your body's ability to absorb it by 2000. dmayes (Deb), says she puts it on her eggs in the moring, as do I or on whatever we are having for supper. It does turn your urine a yello color, but do not worry, and you cannot overdose on it in it's natural form.
Hope you can get those levels up as this has to do with your immune system, and it's ability to fight those nasty cancer cells.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: lavender
Date Posted: May 23 2009 at 3:22pm
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Thanks Nancy. I am trying to add tumeric. My magnesium levels are good . I am allergic to fish and seafood so I am taking the plant form of DHA. I have a great family doctor that follows me and I get my blood checked every two months for vitamin D until my levels get up. Also I have a doctor that is looking at prevention out of a specialty clinic with alternative/complementary therapy. They have cooking classes but I have not been yet.
I didn't know about not cooking the tumeric. I was told to use also in my homemade soups. I add to my spice mix with baked chicken with the flour mixture. Can't taste it anyway. I just wish my WBC count would get back to normal. It still falls low and my neutrophils. My doctor says it is normal for even up to a couple years post tx but still needs to be watched. It does go up after surgery, so at least it is working when needed. I will have that checked again after I heal more from my last surgery a month ago. ------------- Lavender DX Sept 07 Oct 07 Partial mastectomy 0/18 nodes T2a N0 grade 3 TN Mar 08 completed 4AC& 4T Apr 08 mastectomy with expander |
Posted By: mainsailset
Date Posted: May 23 2009 at 4:07pm
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Ok, I have a question. I just had my 3rd D test. First test came back a single number, I think it was 28, 2nd test taken after I had started chemo came back at 18. My onc prescribed 50,000 D2 a week taken by single pill 1x a week. That was back in October/November. Results came back at 32 after 4 weeks.
Nov, Dec, Jan, Feb, March, April I saw no sunlight whatsoever and did not take any supplement...
3rd test taken 2 weeks ago comes back at 40! I look at it and I see the D2 is at 36 (could this be a holdover from the supplement the onc gave me back in the Fall) and the D3 is at 4!!!
Something is screwy here, the 40 is subjectively taken meaning my D is just fine but the D3 reading of 4 tells me I'm in trouble. Anyone else have experience reading the 2 tests?
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Posted By: lavender
Date Posted: May 23 2009 at 4:22pm
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Mainsailset, The test to check the blood levels is 25(OH)D. Have you had this blood test done. ------------- Lavender DX Sept 07 Oct 07 Partial mastectomy 0/18 nodes T2a N0 grade 3 TN Mar 08 completed 4AC& 4T Apr 08 mastectomy with expander |
Posted By: mainsailset
Date Posted: May 23 2009 at 4:41pm
| Yes, all 3 were, and all 3 give a separate count for 2 and for 3 then combine the 2 and it's the overall that the doctor judges by. My question is that my D3 is extremely low and I think lumping the 2 together is giving me a misreading. |
Posted By: Nancy
Date Posted: May 23 2009 at 4:50pm
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Mainy,
I will copy and paste your post to Ronda, and I know she will reply. I didn't know they checked for the D2. Are you sure you had the right test? I posted an article on this in the news forum, and it is on the first page.
Your D levels should be between 60-100 with in the 80's being optimal. If your doctor did not order the correct test, then you will not get your true levels. Some are flawed also, and I had posted an article on that also.
Here is a link that may help you decipher your test. I have not read it.
Nancy
http://www.labtestsonline.org/understanding/analytes/vitamin_d/test.html - http://www.labtestsonline.org/understanding/analytes/vitamin_d/test.html
and another from the vitamin D council. But....Ronda will be able to explain it better than anyone
 http://www.vitamindcouncil.org/newsletter/2009-march.shtml - http://www.vitamindcouncil.org/newsletter/2009-march.shtml
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: mainsailset
Date Posted: May 23 2009 at 5:05pm
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Nancy, I suspect I found the problem and IT'S A PROBLEM. My first test and my 3rd test were both the 25 OHD3 and were processed by Quest Diagnostics. See article below
http://www.curezone.com/forums/fm.asp?i=1345487 - http://www.curezone.com/forums/fm.asp?i=1345487
My 2nd test that came in overall low was by another company. I found several articles about Quest, all with the same conclusions as the one I've linked to. This is so serious I want to throw something.
It also sounds like Quest is the one that separates out the D2 from the D3 on their results which may explain why you're used to seeing just one number....you're tests are being processed by another company using the Gold Standard.
Whatchathink?
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Posted By: Nancy
Date Posted: May 23 2009 at 5:23pm
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Mainy,
Yep!! That company, and I think that article was the one I posted. Did you get this article from the news forum? Go ahead and throw something!!
I keep posting D news, and it seems no one is reading the articles.I am telling all you women that you must....I repeat must....get your levels checked and by the right company. If you just read the articles from the council on Vitamin D, which is a non-profit organization, you will see why I am so adamant on this one thing. Anyone dx with cancer should be eating this tablet like candy, and insisting that their doctors do levels every few months.
D3 is a hormone, and we need to be taking mega doses of this every day. Lori and my tests are the correct ones, and Lori's levels are 76, and mine, which were taken BEFORE I started taking D3 were 57. This year I am hoping for a much higher number, since I take 2800 a day. Lori takes 5000 iu's a day. Connie's were 79, which means that she is doing something right. The rest of you....not so much
 If you think your doctors are going to tell you that your levels should be very high....think again. Most of them don't know diddly squat about D3. Their medical books were written by the drug comapnies, and the drug companies cannot manufacture D!!
5000 iu's is what everyone of you should be taking and possibly higher doses, and get those levels wayyyyy up there. Cancer does not have a chance when D3 is in your system.
hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Nancy
Date Posted: May 23 2009 at 5:30pm
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Lavender,
When you're cooking with the herbs (turmeric), all their oils are extracted, and the biologically active compounds are lost. Just add this to your soups , etc., when you are ready to eat and don't forget the black pepper. If they tell you in the cooking classes to "cook" with it, they are incorrect. You want the full benefit of that 1/4 to 1/2 teaspoon every day in your body!
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: mainsailset
Date Posted: May 23 2009 at 5:34pm
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Thanks Nancy for reminding me to read all the great articles! My attention span is so short that hopefully I'll remember this time for more than a few minutes.
The Quest stuff can and was up to 40% off, they are supposed to be back on track as of January '09 but if my results are any example, not so much.
I'm still concerned about the lump sum thing, seeing my 3's so extremely low and the 2's fairly good, it seems it would be easy for the docs to color me good and move on (or sorta good).
Good thing this is a long weekend so I can cool down before the call to the doc on Tues am.
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Posted By: Ronda
Date Posted: May 25 2009 at 7:00am
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Hi Gals, glad to see the D thing is catching on. One thing to remember is that D deficiency goes hand in hand with Calcium and Magnesim deficiency, so it's really important to take the three supplements together because they need eachother to work properly. Also keep in mind that D2 is NOT as effective as D3, so D3 is your best bet. I have been taking drops that contain 2000 is's per drop.
I'm working on making a video on the topic and just found out Dr. Cannel who runs the D council site will give me an interview. WOOOHOOO!
http://www.vitamindcouncil.com - www.vitamindcouncil.com
Luv,
Ronda ------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: mefowler
Date Posted: May 25 2009 at 8:33am
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Vitamin D is important, and I check the levels of nearly all my patients regularly, but it is also important to check your parathyroid hormone. Now parathyroid hormone is often slightly elevated when your vitamin D level is low, but when I switched myself from D2 to D3 at the advice of my oncologist, without checking my PTH, my calcium soared to 12.9 and I had to be hospitalized. I was taken off vitamin D and they checked my PTH intact, which was elevated. I looked it up in UptoDate and they said that women with undiagnosed hyperparathyroidism can develop hypercalcemia in response to D3. I can tell you that it freaked me out and I was afraid I had metastases to bone. It was a big relief when I found out what was going on. So I would just caution you to have them check your PTH intact as well as your vitamin D, and also that you should be cautious about supplementing with magnesium if you have any renal impairment, as high magnesium can be as detrimental as low magnesium.
Maire |
Posted By: mainsailset
Date Posted: May 25 2009 at 8:48am
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Ronda, I'm still concerned that these test results end up combining the 2 & 3 which for someone like me with a really low 3 I get the thumbs up when really the 3 is severely low. Any chance you can address this in your interview?
The lab that did my work (Quest) is, probably the largest lab in US and yet Vitamin Council as late as March is indicating that you should divide their results by 1.4 to get your real D results.
Maire: I'm so glad you put up that response, I had requested that the lab (Quest) do a thyroid but they didn't and since my first emotional response was to double up on the D's, I'll now go back and get the thyroid.
Why do I get the feeling that the D's are holding some of the answers for all of us?
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Posted By: Nancy
Date Posted: May 25 2009 at 11:19am
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Mainy,
Vitamin D is holding many...not some the answer for all of us, and most MD's do not have a clue. Glad to see that Marie does. The dosages most doctors prescribe are way too low, and will tell you that 400 iu's are enough. Read the link that Ronda posted, or the ones in the news forum that I have posted.
What you weigh should determine the amount of D that you take. So...if a 20 pound child can take 2000 iu's and then some doctors tell you that is all you as an adult should take and you weigh 200 pounds....don't you think you should question that? They are not taught about D in med school, or have very little education on that, or any other vitamin or alternative medicines, as the drug companies sort of let that one slide when they wrote the medical books.
No money in what they cannot maufacture and sell to you to continue to make the billions that they do each and every year. I know I keep telling you all to get Suzanne Somers book Ageless, and I doubt that many have. No I do not get a kick back for telling you
The antiaging field has many answers to the problems that all of us have. We are the sickest country in the world, our women are the sickest in the world, and just by virtue of the fact that most doctors only prescribe drugs, makes us even sicker.The synthetic hormones are proven to cause cancer, and yet most doctors continue to prescribe them. So why are women allowing their doctors to prescibe them? Sure beats the heck out of me.
They cannot think for themselves?...they cannot read.?..the internet is only a keyboard away. The Fosamax is killing women, actually causing bones to braek, and women are dying of espohageal cancer, and yet the women continue to take it? Why? Not me, and since I had been on it for many years, it will take years before it is out of my body. That scares the hell out of me, and should everyone.
D is a hormone, and one that we all need, and pregnant women should be taking 5000 iu's daily and all children should be taking it. The Vitamin D council has published the facts, and yet do you ever hear of a pediatrician prescribing it, or for that matter an OB/GYN? Oh no, be afraid, be very afraid while you are pregnant, and yet small children are developing rickets.
You had better believe that the thyroid plays a major function in our body, and yet they do not give the correct tests, and most doctors do not know how to read the tests. When all the hormones in our bodies are not in sync, cancer steps in very quietly and starts growing. Unfortunately, it seems that women receive improper or no care when it comes to the issue of perimenopause or menopause, and are told to "deal with it", and are given horses urine to help. Or take a Xanax, or another anti depressant or anti anxiety med. Sure as hell is not the solution, yet that is what most doctors prescribe. Take a melatonin to sleep...does wonders and is a natural hormone.
Now they want to outlaw biodentical hormones? Compounding pharmacists will be considered "outlaws" if they mix them? It is compounding pharmacists who mix the chemo.
Ok...enough...the book Anti Cancer, a new way of life, and the book Ageless are 2 good reads, and will really get you thinking as to what you want to put into your body and how you want to live the rest of your life.....especially after a dx of BC and treatments of chemotherapy and radiation. Time to think outside the box, as what we have been told for years and is "inside the box" sure as hell hasn't worked!
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: mainsailset
Date Posted: May 25 2009 at 12:10pm
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Hi Nancy, yes I re-read your articles as well as Ronda's, can't read enough about this. It's my understanding that the 3 is a hormone but that the 2 is not.
In my infinite ignorance I've been trying to connect some of the dots on this and have been considering going on one of the Zometa trials. But a little bug of intuition is telling me that the Zometa is a big pharma's laboratory manuf'd answer to what the D3 could do naturally.
I'm particularly intrigued by the thought that the D2 could be "designed" by Big Pharma to give high #'s with the fully knowledge that the results of the 2 and 3 will be lumped together, hence the patient will remain ignorant of the true D3 number and all the problems that physically will ensue and those ailments will never be resolved but instead treated at a tidy little trust fund for the Big Pharma folk. Sheesh I'm getting cynical!
My mom took Fossamax and tried just about all the others over time, they made her sicker than a dog, so I haven't been real excited about taking anything in that 'family' of drugs.
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Posted By: Nancy
Date Posted: May 25 2009 at 2:14pm
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Mainy,
Read the side effects of Zometa! That would convince me not to take it, and D3....well...no side effects. If the drug companies could manufacture D3 they would, and who knows...there may come a time when D3 will be illegal, except by prescription as it is a hormone, and heaven forbid that we should take or eat anything that is not approved by the FDA....such as Cherrios!!! We forget all too quickly how they work and lobby and how congress is tied to these lobbyists, and all the kick backs they receive. The doctors as well!!
http://cancer.emedtv.com/zometa/zometa-side-effects.html - http://cancer.emedtv.com/zometa/zometa-side-effects.html
Drugs are great, antibiotics are great, but the compounding pharmacists have been doing their thing for many many years. Acually since time began, and here in the states until men started finding a way to manufacture every med we take, and make billions every year doing so, all our meds were compounded. Some still are...as I said...the chemotherapy drugs.
In France the women have been on biodentical hormones for 50 years and they are among the healthiest women on the face of the planet. They are not plagued with cancer and menopausal symptoms as we are here in the states. They take fewer pharmaceutical drugs than we do, probably because they shop daily for fresh food and eat quality food. In Europe (France included) doctors first try to heal homeopathically and then prescribe pharmaceuticals as a last resort. This statement is from the book Ageless, but is a fact!! Here in the states, we take meds for just the slightest ailment. Look at the French women, they look healthy because they are healthy, and chic! Not too many over weight women in France!
Perhaps many women will not even look at the book Ageless since it is written by Suzanne Somers. What I say is take a look at her...60 years old, dx with bc 7 years ago, and has been on biodenticals for years. She did not do chemo, but still gives herself a shot of Iscador every week. She stll does gigs, dancing for hours on stage, and is physically active. She must be doing something right!
Then take a look at all the women, my Lori included who have also been dx with bc, gone through chemo and rads, and then left to fend for themselves due to chemopause. They have so many issues and there is no one to help because the doctors have enormous egos!! How the hell can being exhausted, bitchy, no sex drive, forgetful, emotionless, no periods at age 33 to 45 be normal? It is not!
You are not cynical...you are a truther, and intelligent and can see what is happening. You are soooo right as to the D2!! Don't allow the doctors to keep telling you that the way you are feeling is a"new normal" for women dx with bc and who have undergone treeatments. Pam said it a few of her posts...we are just lab rats for the drug companies.
By we I mean me also, as I was one who was on the Fosamax, and lord only knows what it has done to my body. Oh and I also took the HRT's for many years!!! The chemical compound that makes up Fosamax is the same one that we have in the cleaners that we use to scrub our tubs and remove that nasty ring-around-the-tub. WTH was I thinking taking this? Oh that's right....this didn't come out until all the lawsuits started piling up. The problem is that the doctors are still prescribing it!! WTH are they thinking???? Can they not read? Oh they are actually threatened by the drug companies. That was an article I think in the New York Times?
Here I go again...but ask Donna....sibu...the biodenticals have given her back her life, and now "they" will try to make them illegal becuse "they" are not making billions off of them.
Mainy..read the side effects of Zometa, and decide. Is the more than 31 side effects worth it?
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: mainsailset
Date Posted: May 25 2009 at 3:06pm
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Nancy, I've read the side effects of Zometa and you're so right that it's important to research what it does. Though the severe side effects are rare they are horrendous and getting the PROFESSIONALS to cut back the dosages (the length of time given) is like hitting a brick wall.
I refuse to fall into the trap where meds keep getting piled on top of meds to offset side effects or the failings of a drug.
It was such an initial shock to my psyche to understand that in the world of cancer care the perspective is to treat symptoms with more drugs rather than start with practives that don't have such a wide swath of side effects.
This cancer stuff is complicated but I always get the feeling that the pros fall too easily into the trap of making choices that enhance the compexities rather than diminish them.
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Posted By: thenewme
Date Posted: Jul 29 2009 at 4:20pm
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Hi! New member here checking in with current Vit D level of 45 (up from 24 when tested in April - woohoooo!). I've been reading all the research on Vitamin D, and wow - it's amazing and scary how many of us are low, and really scary how little consensus there is from the "experts" on how much we need. After being tested at 24, I did the 50,000 iu/week regimen for 8 weeks and now am up to 45. Doc wants me to take 2000 iu/day now and will retest again later. It turns my stomach to think that something so simple may have contributed to my BC dx! Ugh! |