help with vit D levels

Nancy, when I asked my onc about taking vitamins during chemo, she said that a multi vitamin (otc) was probably fine because they usually do not have too much of one vitamin in particular, but she didn't want me to take any extra single-dose vitamins.  But she also didn't want me to take them the day of or the day after the chemo, just in between.  I don't think anyone knows the right answer.

Oh I did want to add about vitamind/supplements during chemo.  I was told NOT to take any anti-oxidants as they interefere with the chemo process, nor take any Omega-3's.  I didn't take any vitamin d either at the time, and yes, still stayed deficient.   Okay, just an .02 as I just thought about that (the chemo nurses told me about the anti-oxidants).   ~juli

I also don't think anyone really KNOWS the right answers to our problems here!   We plug thru and do the very best we can, and listen to each other, that helps tremendously, I think, and I'm grateful. 

*HUGS* and congrats marejo/maryjo!!!   I also had the dose-dense chemo (cytoxin, adriamycin, taxol & gemzar) every 2 weeks, and needed the neulasta (and boy did that make the bones hurt for a few days, huh???  WOWSA!) every 2 weeks also along with the red blood cell boosters.

Congrats on your 5-year cancerversary (I like that word!)...waiting for mine, no remission as of yet.

Mary Jo, you are so right!  That is my motto, live each day like you're driving a sports car, which I do (got that after dx of cancer--why not right??     )

Yes, that Neulasta surely did its job, you are right.  I always knew the excruciating pain in mostly the hips (marrow!) would last only a couple days, tolerable indeedy.

Love the way this thread keeps on going and changing for the better!   ~juli

It has been a while since anyone posted the link to grassrootshealth.net so here is a link to one of their latest videos.

http://www.ucsd.tv/series/index.aspx?show=show&seriesnumber=520

Here is the link to the press release mentioned in the video.

http://ucsdnews.ucsd.edu/newsrel/health/vitamind07.asp

oops! Don't know why my post got entered on the wrong board!  Sorry... deleted!

squidwitch:  (love that name BTW!)  My primary doc when she got the results of the vitamin d level at 30, never called me.  I called my endocrinologist to inform him of the results, and he put me on the 50,000ius of D2 for 12 weeks.  He wanted me to be OFF of it for 4-6 weeks to get retested, I'm 'ass'uming that it's due it being metabolized properly to D3 in the body (my own assumption there).  I am getting all my bloodwork tomorrow (Monday) for my oncologist anyway, so I do have a script my endocrinologist wrote months back, so I will go ahead and get that tested again at 5 weeks instead of 6, see what the D levels are now.  THEN I will be having discussions, as I have a few issues right now (bone density loss, need a bone drug, and my onco wants to switch me from tamox to an AI---and I am HATING reading the s/e's you all have received on the AI's).  SOooooo, it's complicated as usual (parathyroid/calcium issues as well).

We shall see, as JO says!      Good luck, Jo, and I hope you get something that makes you feel GOOD for your vacation, you deserve it mightily.   Thanks all, always.   ~juli

Chrissy:  GOOD news on your bone density, kudos!

I have parathyroid issues/parathyroidectomy in 2002, just this past month, my now bone density shows a 9% bone loss.  I have taken vitamin d, and been deficient chronically for many years.  For me, there are too many issues to determine what actually is causing the bone loss.  I do need to teleconference today with oncologist and endocrinologist as I'm still on tamoxifen, as onco didn't want to switch me to the AI yet (due to possible bone issues--now what, lol??)...and I do need the bisphosphinate to prevent further loss.  It gets so complicated!  (Will get retest today also for the vitamin d after the d2 50,000ius for 12 weeks and a break for 5 weeks of no D at all, at recommendation of endocrinologist).  If I keep repeating myself, forgive me, just need to keep it all going here. 

JO:  Will await your results--good luck tomorrow! 

~juli

notself:  You are too kind, thank you!   That chemo-brain-fog, boy is that real!!!  (Have to write down everything)   Yeah, I'm my own advocate, I have always been independent in my healthcare, mostly out of necessity (BF is truck driver) and secondly just the way I am.  I drive myself to all appts., all chemo/radiation as well.   Did I mention chemo-brain-fog?       (LOL)    Thanks again.  I really appreciate everyone's experiences and comments.    ~juli

Hi Ladies, I have been scrolling through this thread and definitely see that there is some important information here.  My Onc has never authorized Vit. D to be tested in my bloodwork (I have asked and he declined and said it was not useful).  This week is my final Herceptin treatment and they will order a final full bloodwork panel, so I will really push for the Vit D...heck, maybe I will check the little box on the form myself (if I knew which one to select!).  For someone that does not know her D levels via bloodwork, and is diagnosed with Ostepenia (I am on the Zometa trial, so maybe that will help?).  I haven't taken any supplements for the past three months and need to (obviously).  Can one of you recommend a basic "tried and true" option...  and I am blown away that one can find a Vit D capsule with 50K IUS?  Wowee!

Thank you, all!

I too am confused why there is so much inconsistency among doctores regarding vitamin D.

Sanaisa,

My oncologist saw no need for me to visit with a nutritionist "because my BMI was in the normal range", nor did she test for Vitamin D. My OB-GYN is the one who tested for Vitamin D at my request. I found a nutritionist on my own (hard to find!) and am working with him to regulate my vitamins and eating habits. It actually astounds me how narrowly focused oncologists are. She made an assessment based on my WEIGHT that I was getting the nutrients that I need???? Come on!  I told her that I've suffered from IBS-D for 5 years now, and even a layman like me understand that I am not absorbing all my nutrients because of this.

Anyway, that's enough of ranting for today.  The answer is: take charge of your health by going to a doctor that will help you to find the answers. If you persist, you will get the total coverage that a cancer patient needs. If you leave it up to the oncologists, you will only get your chemo drugs and breast surgeries. (unless you go to Cancer Centers of America)

Good luck, and hope you can get your test soon!!

I am lucky in that my oncologist has always been concerned about my daily migraines and parathyroid/calcium/vitamin d issues.  He's willing to conference with my endocrinologist about it all, so that I get the appropriate treatments for cancer AND bone density loss.  And, yes, that includes prescription drugs and supplements. 

elimar:  I'm not sure what you mean about 'preventing cancers without the use of prescription drugs'?  I do believe we needed (me) the chemo and radiation, tamoxifen and now the AI.  Alot of meds interfere with my migraines (makes them worse), so my team of docs really do a good job of researching what's next to do, we try it, if it makes things worse, we go on to other things (yes, a neurologist and PCP included in this team). 

As we all know, WE have to take charge of our own healthcare.  We do need the specialists though, in my own opinion, and yes, bring up our OWN questions about our own healthcare issues.  If a doc doesn't like the questioning, they can (and have) be fired.     ~juli

elimar:  I didn't mean to put you on the spot there, sorry!   I hear ya on not looking forward past the meds that we need for the 5-7 years (me--10 years--3 on tamox, 7 on an AI is the plan).  My guess would be they don't know of anything past that protocol?   I am lucky my docs have always known about my chronic deficiencies in Vitamin D, and we treat it, get deficient again, then treat it again.  It's one of the huge unknowns on HOW to keep up a 'good' level, I believe.

JO:  I didn't realize you didn't have chemo for what you've listed as your dx.  My protocol was definite surgery (needed 2, no clear margins up against the chest wall), and if there were any positive nodes (sentinel node was diseased) then definite radiation.  And, I do realize everyone is different and have differing docs/protocols. 

Has anyone been on Aromasin?  That's the AI my onco wants me to try after talking with endo.  Wondering (though I looked them up too) about personal side effects (yes, I can look other places here on this forum too   )    THX all... juli

I had my first vitamin D test in Nov 2008 after I asked my onc to include it in my regular pre-chemo blood work. It came back at 50. I've been working on getting it higher by taking 3000 IU of D3 a day. I also don't use sunscreen on anything but my face when I work in the yard (probably 2-3 hours/week). I'd like my levels to be around 70. I just saw my onc for one of my 6 month check-ups. She ordered blood work which included Vit D levels. I was a little disappointed that it came back at only 56. I think I'm going to start taking another 2000 IU at night.

Hi Juli - yes, I was switched after 2.5 years of tamoxifen to aromasin, which I took for 5 years, making 7.5 years total of endocrine therapy.I found tamoxifen caused me many aches and pains, but aromasin was vitually side-effect free! I did get some hair-thinning, but not too noticeable.

My only problem was ever-worsening bone density, going from osteopenia of the spine to full-blown osteoporosis.However, then, like you, I discovered I had primary hyperparathyroidism, which was causing calcium to be leeched from my bones despite taking bisphosphonates (fosamax).I had parathyroid surgery in March of this year (minimally invasive procedure without a general anaesthetic!), and am hoping that the bone density will now improve.

Incidentally, my vit D status when last tested was 67, so I am hoping this continues or indeed increases; my endocrinologist believes that a level of around 80 - 100 is optimal for breast cancer patients.I am currently taking approximately 2,000 iu of D3 daily,as well as calcium and magnesium.(I stopped the calcium until I had the parathyroid adenoma removed, as it would have led to more calcium being deposited in unwanted places).

I believe there may be a connection between hyperparathyroidism and bc - there ar rather a lot of us here with concurrent disease.

Best to you,

Sam