My Bone Update

Becky · 11-30-2009, 03:14 PM

I got a dexa in July (get one every 2 yrs) and since I am now over 5 yrs out, I don't get anal about getting every report on non breast stuff so I didn't. I had my oncologist appointment today. I get Zometa every 6 months and asked about my Dexa (since he is the one who ordered it.

He said that my bones are now perfectly normal - above normal actually. No more osteopenia anywhere. He said this was almost a miracle because their intent when one is on Arimidex (and I had an ooph so I went into premature menopause) is to not have things get too much worse (and I was getting slightly but not dramatically worse).

He asked what I was doing differently and - in a nutshell, I have been taking about 2500iu of Vitamin D3 April - October and about 4500iu October - April (per day). I have done this for about 2+ years now and its shown in my bones so I am hoping it does all the other good stuff its supposed to do about preventing cancers and other diseases as well.

I just wanted to share that some of the things we learn about really can work and I have always been a firm believer in Vitamin D3.

Shine on!

P.S. After 8 doses of Zometa, I couldn't get one today because my onc said there was no way my insurance would pay for it but they will pay for me to get one once a year so next visit...

caya · 11-30-2009, 03:29 PM

So happy to hear your good report, Becky!! I have also started taking about 4500 units of D3/day - sounds like it really helps.

all the best
caya

chrisy · 11-30-2009, 04:10 PM

Hey Becky,

Yeah, that's the way to do it - get so healthy that your insurance co won't cover things!

Mary Jo · 11-30-2009, 04:58 PM

That's great news Becky! I am having my first bone density test in February and me and my internist are excited to see if my "mega" doses of Vit. D3 make any difference. (I take 2000 i.u. in the morning and 2000 i.u. in the p.m. - plus fish oil which I believe has some D in as well) At my last exam by my internist (he is the one who checks my D3 levels) my number was 62 - up from 30 something the previous year. So, we're anxious to see if all this means ... great bones. Time will tell.

Thanks for sharing your great news.

Love and hugs...

Mary Jo

Chelee · 11-30-2009, 05:53 PM

Wow Becky...amazing news. I bet that really shocked your doctor. Maybe the insurance companies could learn something here...make it mandatory for us woman to take mega doses of D3 and that alone would save them a fortune in scans and Zometa infusions.

I know I'm going to increase my dose starting today...thanks for sharing that with us. And congratulations on such great news! Way to go girl! Your doing all the right things and its paying off big time.

Chelee

tricia keegan · 11-30-2009, 06:19 PM

Wonderful news Becky!! Do you attribute this to the D3 or zometa??
Either way something is working for you

Btw, did you stop arimidex or are you still taking it??

Becky · 11-30-2009, 08:23 PM

I am still taking Arimidex. I started with Tamoxifen and switched over. In Sept 2010, it will be 5 years on the Arimidex (and I got the ooph 3 weeks before switching over).

I continued to get slightly worse even though I was getting the Zometa. I will say that perhaps it is synergy since I started the higher dosing of D3 about 6 months before the second to last dexa but the Zometa wasn't doing it alone. I was always taking about 1000iu prior to the big jump. I started taking D3 early on and I thought 1000iu was a large dose but it really isn't. I was amazed how good the July one was. D3 definitely had something to do with the dramatic results.

Gerri · 11-30-2009, 08:31 PM

Thanks for posting your great results Becky! I hate to admit that I have been remiss lately about taking my vitamins but will be back full force starting tomorrow - actually I'll start tonight with my evening dose of D3. I see my onc again in February and will request a bone density test then since it will be two years since my last one.

Congratulations on being 5 years out and doing well.

Love and hugs to you.

Chelee · 11-30-2009, 09:55 PM

Becky, There is no doubt the D3 is the major factor here...but you run alot..right? Or do I have you confused with someone else? If it is you...how far to you run and how often do you fit that into your schedule? I know running supports good bone health. But for now I'll stick to the D3...running while holding on to my "walker" wouldn't work out to well. lol

Chelee

Soccermom · 11-30-2009, 10:06 PM

Bravo Becky!
We are very similar with our diagnosis and treatment. I will be 5 years on Arimidex/Tamoxifen in August 2010. My spine had lost density at my last scan 12/08, but my hip was stable. My new Onc here doesnt do any testing whatsoever not did she even want to discuss Zometa (am on BONIVA)... but I am seeing my new GYN and will speak with her.
again CONGRATS! so nice to see something that works so well and is so innocuous!

Marcia

Ellie F · 12-01-2009, 03:57 AM

Wow Becky , well done!
I have just found an American brand of liquid vit D3 and take 5000units a day during winter. I hope it keeps my bones as good as yours
Ellie

Vi Schorpp · 12-01-2009, 05:16 AM

Well, Becky, that is good news, and thanks for sharing.

suzan w · 12-01-2009, 11:49 AM

That is awesome, Becky!!! I am seeing good results with my bones too...Forteo, Reclast, and mega doses Calcium citrate, Vitamin d and now I am wondering about magnesium...How much of that should I be taking??? Great News Becky!!! Yay!!! xo Suzan

schoolteacher · 12-01-2009, 01:06 PM

Becky,

Glad to hear your positive results. I am taking the same amount you are. In April, when I dropped back down to 1000IUs a day, my level went back down to 27. I could tell it was low again because my bones ached. I am taking Zometa every four months since the BC was in my L4.

Amelia

Adriana Mangus · 12-01-2009, 03:12 PM

Becky;

Have you experienced any side effects from the 4ths+ units of Vitamin D3 you've been taken?

I checked with my doctor and he suggested to follow the guidelines. I don't think so, as the guidelines are for people who are not defficient on this vitamin.

I further checked with the Pharmacist at the Onc. department where I received the chemo treatments and she sided with my onc!

I would like to add more units to the mere 1,000 units I take on a daily basis, but first I would like to hear from someone like you who's been on it for a time.

I appreciate a response.

Thank you.

RhondaH · 12-01-2009, 06:28 PM

Awesome news Becky... I have my Dexa on Monday and my Onc. appointment the following week. I'm printing off your "recipe" and will begin to follow it. Take care and God bless.

Joan M · 12-01-2009, 06:43 PM

Becky,

Great news about your bones. And I really respect your diligence about taking supplements. It seems to have paid off.

Joan

Becky · 12-01-2009, 07:08 PM

Adriana

I have noticed no side effects. I do try to split the doses into breakfast and dinner. Most winter days I take up to 4500iu. It is like nothing and it should be if you figure that being out in the summer sun for 20 minutes with arms, legs and face exposed (with no sunscreen) produces 20,000iu and potentially, you could be doing this every day (although the tanner you get or the darker your skin is naturally, you make less. This is one reason why hispanics and African Americans can be Vitamin D deficient).

However, I forgot if you are taking chemotherapy. Vitamin D is NOT considered an antioxidant. In its useable form (it is converted in the liver and then the kidneys to is useable form) it is a hormone.

Another reason people become deficient, especially as we age, is that the liver and/or kidney conversions become less efficient so more is needed to keep the levels up.

If you are afraid to supplement more without your doctor's permission then perhaps you should ask your onc to run your Vitamin d level the next time you are getting standard bloodwork. If the level is good, then its good but if not, your doctor will certainly want you to do something about it and keep up the levels with more Vitamin D intake.

For Susan W - magnesium is abundant in the diet and is in many veggies, fruits, eggs etc. However, you do need adqueate levels in order to use calcium in the body. Chances are very strong that everybody gets enough unless all you eat is McDonalds.

Jackie07 · 12-01-2009, 11:23 PM

Becky,

Glad to hear the good news. And thanks for sharing your knowlege - you have become such an expert on the Her-2 treatment. Our Board should get together and publish a book on the subject to benefit even more Her-2 sisters.

Becky · 12-07-2009, 08:13 PM

Fyi -got my appointment blood work results back today. I asked but wasn't sure they'd run my Vitamin D level but it was and came back a 46. Respectable but I thought it would be higher but high enough as greater than 32 is in the not deficient range.

I have no idea what it was like before supplementation - probably bad as my mom, cousin and daughter had been tested and it was very low (single digits) for all 3.