gosh...what next...

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  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited March 2011

    Dear Weesa, why do such nice people like you have to go through this anxiety? Prayers are coming your way, just knowing in my heart that you have been put through this for strength and that you are going to be fine, Peace, Kathy

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    Weesa, there are 2 kinds of bone mets; one that takes away bone and one that adds bones. I would have thought that if blood levels were high, it'd be the one that takes away, and the blood was getting rid of the excess. If it's the one that adds bone, I'd think your blood levels would be low as the bones were taking the excess, but you have dense bones. So....I dunno, but like you, I build all sorts of scenarios in my mind to explain things. Could it be as simple as your kidneys not being able to process the calcium anymore so it dumps it into the blood stream? Or, could it be as simple as your dense bones releasing excess as you age?

     Still here, waiting with you to see what evolves....

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  • littletower
    littletower Member Posts: 333
    edited March 2011

    And I'm sitting with you too Weesa, we're all here as much as we can be. I have nothing to offer but support and cyber hugs. And all good energy coming your way...









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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2011

    I'm thinking of you too, lots of hugs.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited March 2011

    Just wanted to let you know I've been thinking about you.....
     
    Waiting is just the worst part of this disease....
     
    Hoping that there is a benign reason for all of this.....
     
    Jacqueline 
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  • Bugs
    Bugs Member Posts: 1,719
    edited March 2011

    Weesa, big hugs!  Please hold on to the fact that there a SO many things this could be the result of besides bone mets.  {{big hugs}}

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  • diana50
    diana50 Member Posts: 2,134
    edited March 2011

    weesa....HUGS.....what are the docs going to do next to check this out? 

    sorry you are going through this.  we are all here for you*

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited March 2011

    O Weesa,

    I am so sorry.  If your calcium level has been rising over several years, this is not a new condition.  So I would doubt sudden bone mets.  I am certainly not a doctor, but sounds like something systemic/hormonal to me.

    I got freaked out in September by a borderline low GFR number (glomular filtration rate) which is a screen for Stage III kidney disease.  This is calculated by putting creatinine levels into a crunching algorithm.  All of my other kidney-related blood work was normal.  After chatting with my oncologist, you will never guess what the cause of the abnormal reading was.  I AM FIT AND MUSCLED.  Hence the above normal creatinine readings for a woman my age (the algorithms assume major flab, I suspect).  And of course they rose as my fitness level increased post chemo due to the increase in muscle mass.

    I am telling you this story because there could be some relatively benign cause for the hypercalcemia.  You need to get to the bottom of this.

    BTW - a test of 10.5 vs 10.4 could be random variation.  I wouldn't be alarmed there at all.

    Hoping you get to enjoy this weekend.  Thinking of you. - Claire

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  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2011

    Thinking of you.............and sorry you have to deal with this - it sucks!!!

    ((((HUGS))))

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited March 2011

    Weesa,  I don't have experience or advice to help you. Know that you've accumulated a heap of good karma through years of lending support and kindness to our sisters at bc.org (me included) and in Hendersonville. And know that we are all sending positive thoughts and energy to you. As for me,  I'm here waiting with you...you have much company through the waiting...we all know the waiting can be so hard. 

    Take care, dear Weesa.

    Molly

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  • gillyone
    gillyone Member Posts: 1,727
    edited March 2011

    No experience or advice to offer just hugs and support.

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited March 2011

    Weesa,  Do you take Vit D and have levels monitored? This morning I found an article in my email from a doc associated with Boston University which says that high levels of Vit D can cause increase in calcium blood levels. He said that Vit D accumulates in one's system (unlike water soluble vitamins) so it sounds plausible that the increase over time could cause calcium level increase over time, as in your case.  If applicable, I can try to cut and copy the (longish) article here or forward the article to you.

    To stage 3ers, the gist of the article is that the newest govt. standards continue to underestimate  optimal therapeutic levels for Vit. D....I did not want to imply the article opposes Vit. D supplementation.   

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  • weesa
    weesa Member Posts: 707
    edited March 2011

    Molly, funny you should say this--one of my pet theories is that I am taking too much Vitamin D--I am at 55 on the Vitamin D3 test which is good but not overwhelmingly high, but I am wondering if for my particular body chemistry it was too much. About two weeks ago I stopped taking all Vitamin D3 supplements, so I wonder if in a few months my calcium level will start going down instead of up.The relationship between calcium in the blood and Vitamin D3 levels seems very complex--gets into endrocrinology I don't understand, but I know there is an interrelationship.

    I see my onc for the first time this week since all this started--since he is a hematologist, too. I thought he might help more than my pcp. You can be sure I will let everybody know when this is resolved what the heck it is.

    It is 37 degrees right now at my house down in the valley so I am wondering if you are getting sleet. This has been a pitsy weekend--this time last Sunday it was 40 degrees warmer here. We are busy bracing for St. Patrick's Day at the pub.

    I would love it if you could out the article on here--I know there are many women here taking mega doses of Vitamin D3, so even if it isn't relevant to me, it could help somebody else out.

    Speaking of St. Patrick's Day, one week later you have your 2 year anniversary! 

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  • kimber3006
    kimber3006 Member Posts: 586
    edited March 2011

    Weesa - Hope it's just the D3 and an easy resolution.  I've been following this thread and wishing I had something as great to tell you and make you feel better as you always do for me.

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  • weesa
    weesa Member Posts: 707
    edited March 2011

    Thanks for holding my cyberhand and waiting with me. Finally saw both my  pcp and my onc yesterday. Both think I should wait and do nothing for a few months and see if my calcium falls back to normal range. My pcp thinks I was taking too much Vitamin D3--I was taking 2,000iu's a day to get my Vitamin D level from 40 to 55.

    My onc thinks my pth score does not look like parathyroid disease or metastasis to the bone.He pointed out to me that over the nearly 9 years he has followed me my calcium levels tend to wobble around, once getting as high as 10.6. They would always eventually wobble down to the mid 9's again. He said back six years ago, when I had a 10.6, if that had been bone cancer  I'd would be dead by now!

    I guess there might be some lessons learned here--first that lots of Vitamin D3 might not be good, at least for me--it is a hormone, don't forget. And always look over your blood tests carefully and get a copy for your files too. When I went back last night and looked at all the old tests, sure enough, I wander all over the place. I just never paid much attention to that calcium score.

    The other part of my conversation with my dear onc was my dread of my annual mammogram coming up, that I hate being part of that industry. He agreed every few years I should have an MRI due to my very dense breast.

    In 3 months I will get my blood calcium level checked again, and will let you know. Sorry about the waiting, I know it is disturbing for all of us.I'm determined not to fail you guys, being nine years out, it would be scary to watch me decline, so am not gonna do that!

    Love to all my breast friends here, I depend on you more than you can know. Weesa

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  • clariceak
    clariceak Member Posts: 752
    edited March 2011

    We've all been so worried about you. It is encouraging to hear that Vit D may be the culprit.  I am curious about the recommended levels for Vitamin D. It does seem to vary from doctor to doctor.

    Sorry, I'm fuzzy this morning.  Received an automated "head to higher ground" call at 4:00 a.m.

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  • weesa
    weesa Member Posts: 707
    edited March 2011

    Yikes...stay ahead of the tsunami. Let us know how you are when you can. Sosweetof you to post when you are trying to keep above the water. Concerned...Weesa

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  • clariceak
    clariceak Member Posts: 752
    edited March 2011

    Everything ok here. A water channel is visible from my home and fifteen minutes ago I could see an unusual current going through which was caused by tsunami.  I used to be terrified of tsunamis but now bc is what frightens me.

    Such a tragedy for Japan. 

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  • kimber3006
    kimber3006 Member Posts: 586
    edited March 2011

    Weesa - So glad to hear it looks like something as simple as a little too much D!

    This makes me wonder, how often are the rest of you getting your D checked?  Mine hasn't been checked for at least 6 months.  

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    weesa, SO glad to hear you feel better. Nice to know it's happened before and levelled out. Shame on your doc for scaring us all so much!!!

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2011

    Weesa, fantastic news!

    As an aside, if you google high calcium, it doesn't mention Vit D. Yet if you google high Vit D SE's, first thing they say is it causes high calcium levels.  Guess that is why one shouldn't randomally google......

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011

    But if you stop your supplements, the results aren't really real then. A lot of hospitals have posters urging you to tell your docs what OTC medications you are on as so many have contraindications. I'd rather have a test where they check how I walk around normally......

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited March 2011

    Weesa,  that's great news!  I was so glad to find your update and know St. Pat's Day will be better without all those extra draining emotions hanging around.  Celebrate!    Molly

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  • Bugs
    Bugs Member Posts: 1,719
    edited March 2011

    Weesa, wonderful news!!!  Doing the happy dance with you!

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  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited March 2011

    Great news, Weesa, go out and celebrate this weekend!!!!!! Peace and blessings, Kathy

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited March 2011

    Yeah, ALWAYS good to hear GOOD news!!!

    Sharon

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  • mcsushi
    mcsushi Member Posts: 174
    edited March 2011
    So glad to hear you got good news weesa!!! Now enjoy your weekend! Laughing
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  • weesa
    weesa Member Posts: 707
    edited March 2011

    Thank you, girl friends, there are few things more satisfying than sitting down at the puter with a big mug of hot tea after a long hard day to find so many posts...

     KerryMac--Yes, I came up against that puzzle, too, back when I went to Dr. Google--that there is a relationship between high Vitamin D3 and high blood calcium, but very puzzling the way it is presented. BTW, I think you were the person who convinced me to leave Dr. Google cold turkey. Glad you are checking it for me.

    Octobergrace has said she will send me that article she alludes to from the Boston University professor soon. I am hoping my experience will help you all avoid this scary experience-I know a bunch of you are taking a lot of D3...

    I willl feel a whole lot better when 3 months have elapsed and I have gone back to the normal range.In the meantime I am going to enjoy spring unfolding in the mountains. (We had a few snow flurries today but tomorrow is going to be 65 degrees).Am looking forward to the insanity at my little Irish Pub on Thursday, the 17th.

    SherriG--I am still mulling over your comment about stopping supplements before your onc visit..

    But, hey if it keeps him happy.

    Clariceak I know what you mean about having a new benchmark for scary. (I was in a bad tornado when I was almost two years out and it didn't phase me, now I understand why.) Here's wishing you a peaceful weekend after being roused at 4 am.

    Hugs to all, W.

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  • weesa
    weesa Member Posts: 707
    edited March 2011

    Thank you, girl friends, there are few things more satisfying than sitting down at the puter with a big mug of hot tea after a long hard day to find so many posts...

     KerryMac--Yes, I came up against that puzzle, too, back when I went to Dr. Google--that there is a relationship between high Vitamin D3 and high blood calcium, but very puzzling the way it is presented. BTW, I think you were the person who convinced me to leave Dr. Google cold turkey. Glad you are checking it for me.

    Octobergrace has said she will send me that article she alludes to from the Boston University professor soon. I am hoping my experience will help you all avoid this scary experience-I know a bunch of you are taking a lot of D3...

    I willl feel a whole lot better when 3 months have elapsed and I have gone back to the normal range.In the meantime I am going to enjoy spring unfolding in the mountains. (We had a few snow flurries today but tomorrow is going to be 65 degrees).Am looking forward to the insanity at my little Irish Pub on Thursday, the 17th.

    SherriG--I am still mulling over your comment about stopping supplements before your onc visit..

    But, hey if it keeps him happy.

    Clariceak I know what you mean about having a new benchmark for scary. (I was in a bad tornado when I was almost two years out and it didn't phase me, now I understand why.) Here's wishing you a peaceful weekend after being roused at 4 am.

    Hugs to all, W.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2011

    Ah, yep, I have a bit of a problem too with Dr Google!

    I actually have just cut down my Vit D after reading this, I was taking 6000 iu's a day, think I will cut down to 4000iu's.  I would be interested to know how much is OK, how much can cause issues. Hopefully we'll be seeing some sunshine sometime, and get it the natural way....

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