Osteoporosis

SusanAnne · March 2004

Hi everyone. I just recently changed to a new GYN and she sent me for a bone density test (I'm 46), my first. The results I got back yesterday took me by surprise. My T-score for the spine was -3! That means I have osteoporosis. My hip was fine but my wrist was -1.1, between normal and osteopenia. Anyone else with scores like this? What treatment are you receiving? The GYN wants me to discuss with the onc. whether taking calcium & vit. D would interfere with my treatments (tamoxifen, herceptin). Is anyone taking fosamax? I'm thinking maybe that's the way to go. I'd appreciate any input, thanks.
Susan

Odile · March 2004

Hi
My doctor has had me receiving Zomeda for the past year and it looks like it has definitely strenghten my bones. I take it by IV once a month and the treatment last approximately 20 minutes. I have had no negative side effects. I began taking it because of osteoporosis as well as having some lesions on my back bone. Now all lesions are gone and my bones are stronger and therefore less likely to be attacked by cancer. I was diagnosed with breast cancer at 40, I am now 51 years old

tlmac · March 2004

Hi Susan, I'm 55 and was 4 years past menopause when I discovered the lump last January. Have no idea if I also had osteoporosis because I didn't have my first DEXA Scan till after surgery and chemo. My spine is 2.3 and hip is 1.9. Cancer was ER+ so I'm taking Arimidex (my choice over Tamoxifen) for 5 years and it actually worsens bone density so I've been on Fosamax since August 2003. No side effects that I am aware of although there are several documented. Guess I'm one of the lucky ones. Even the Arimidex doesn't give me the hot flashes many women complain of. Can't speak for your oncologist but, to my knowledge, Fosamax shouldn't interfere with Herceptin, a monoclonal antibody specific to Her2Nu+ and Tamoxifen which blocks estrogen from breast tissue. I also take 600 mg of Caltrate Plus (contains vitamin D also) twice daily for a total calcium supplement of 1200 mg. No problems with that either. My GYN says to wait about 2 years before doing another DEXA to give the bone density a chance to rebuild. Good luck with your treatment.
terri

jhope · April 2004

Hi SusanAnne, I am sorry to hear you haveing to deal with this on top of everything else. This is going to sound bizzaire I know, but isn't everything when dealing with Cancer? It is almost helpful or encouraging to me. I am 39 now and particiapating in a research study for osteoporsis/cancer related. I had bone density scan and am taking 2 800mg of Clondrate, I HATE taking pills, have to for next 3 years and do bone density, etc. It is so personal to hear from you to know that eventually it will be worth while. God Bless, Julia

SusanAnne · April 2004

Odile said:
Hi
My doctor has had me receiving Zomeda for the past year and it looks like it has definitely strenghten my bones. I take it by IV once a month and the treatment last approximately 20 minutes. I have had no negative side effects. I began taking it because of osteoporosis as well as having some lesions on my back bone. Now all lesions are gone and my bones are stronger and therefore less likely to be attacked by cancer. I was diagnosed with breast cancer at 40, I am now 51 years old

Hi Odile. Would you explain a little about the lesions? How did you find out you had them? I saw the term "hypercalcification of malignancy" while researching the osteoporosis and wonder if it is connected. How long will you be taking the Zomeda, do you know? Glad to hear it's working for you. Thanks.
Susan

billandpatty · April 2004

Hi SusanAnnne
I'm not remembering what my T - score was for my Dexa Scan -- but I am on Evista. I was 47 when I was diagnosed with breast cancer (ER- ..no tamoxifen) and had chemo and radiation. I went into menopause at that time. After several months of complaining that I felt like an "old Lady", my primary care physician sent me for the scan ... it came back that I was losing bone. At that time, there were findings from a study released that linked the onset of menopause from chemotherapy to osteoporosis. They believe you lose bone faster than normal when you enter menopause by way of chemotherapy. Anyway, I've been on Evista (and a calcium supplement with Vitamin D) for almost 3 years. I went in for another scan about a year ago and my bone health had improved. I can't say that I have felt any bad effects from the Evista (you have to go off of it for surgery or anytime that you are immobile for a period of time) -- I don't feel near so "old" (stiff and sore) as when I was complaining about it. My onc. has told me that another possible "plus" from the Evista is that it may help prevent breast cancer for those of us that are ER- ... but they can't prescribe it for that reason yet.

Isn't this breast cancer something? You find yourself dealing with the breast cancer, the treatments, and side effects from the treatments, etc. and then you find yourself in menopause, so you deal with that, then it's lymphedema or carpel tunnel, etc... (and I'm sure some have had much more than that to deal with) ........... I think that's what sometimes gets us down. After treatments we think we should be getting "better", that we'll get "our" bodies back and then we find ourselves having to deal with all these other health problems that we didn't have before we had breast cancer!

But we're all still here! And that's the good news that I celebrate every day. Have a good one.

Patty

p.s. I was surprised that I had lost bone too -- I've walked and exercised everyday for the last 15 years.

Odile · April 2004

SusanAnne said:
Hi Odile. Would you explain a little about the lesions? How did you find out you had them? I saw the term "hypercalcification of malignancy" while researching the osteoporosis and wonder if it is connected. How long will you be taking the Zomeda, do you know? Glad to hear it's working for you. Thanks.
Susan

Hi Susan,
Sorry, I misspelled the name of the drug I am taking. It is Zometa not Zomeda. Anyway, I was diagnosed with breast cancer 12 years ago. After chemo, I was put on tamoxifen for 5 years because my cancer was ER and was cancer free for 11 years. I was also prescribed fosamax because I had the beginnings osteoporosis. Then during a regular doctor checkup he noticed my tumor markers were rising. The CT scan revealed a small tumor which was not dected during my mammograms located in the scar tissue of the reconstructed breast. It was removed and then he tried several other estrogen blockers but they did not work. Another CT scan soon after revealed several malignant calcifications(lesions) on my back bone and two on my liver. He immediatly put me on Zometa and now they are gone. I am on chemo for the liver but my bones are in good shape. My oncologist feels that I should remain on the Zometa indefinitely. At this time, eventhough I don't like to put drugs into my body, I have no choice since this drug has helped me. Lots of luck

bunnie · April 2004

Hi i dont know if it it is too late or not but my Oncologist is talking about putting me on a med called zometa it is suppose to help streghthn the bones so you might want to ask aboout this.If i go on it they are going to start me on it tommorowo during my last chemo.Bunnie

rob6 · April 2004

Hi SusanAnne,
I too have osteoporosis i am 45. at the end of my chemo. I developed an infection on my spine it surrounded my lower 2nd disk and fractured my 3rd vertibrae then a year ago i started having increased pain and tingling down my left shin. a bone scan and MRI revieled a compression fracture at the 3rd vertabrae again at that point i was put on Zometa every 3 months. I do have side effects every other dose. they are severe bone pain and weakness for about 3 days. I haven't had a repeat bone scan but should have one soon. I would ask your ONC. aboout this treatment Zometa is given to post menopose woman to try to get your bone marrow to release more calcium and RBC.
will let you knnow when i have repeat bone scan.

Robin

jhope · April 2004

OKAY GUYS, now I'm worried! I need to laugh at myself because if not I get overwhelmed. I'm the dork who said I was in the study for osteoporsis/cancer meds. What if I'm getting the placebo, I'm 39 and after reading all the msgs am scared. I'm not allowed to even take an over the counter calcium. I am in menapause (finished 12 txs chemo, radiation 3 months ago, and my lower back hurts, it's hard to move after even sitting for 20 min. I thought I was deconditioned. Any thoughts? thanks. Julia

mssue · April 2004

jhope said:
OKAY GUYS, now I'm worried! I need to laugh at myself because if not I get overwhelmed. I'm the dork who said I was in the study for osteoporsis/cancer meds. What if I'm getting the placebo, I'm 39 and after reading all the msgs am scared. I'm not allowed to even take an over the counter calcium. I am in menapause (finished 12 txs chemo, radiation 3 months ago, and my lower back hurts, it's hard to move after even sitting for 20 min. I thought I was deconditioned. Any thoughts? thanks. Julia

Hi Susan,

I had no idea your were going through so much stuff.I'm so sorry I'm not alot of help in this area but I'm here if you need me.I will keep you in my prayers.You seem so strong may God be with you,take good care of yourself!

w/love Sue

billandpatty · April 2004

jhope said:
OKAY GUYS, now I'm worried! I need to laugh at myself because if not I get overwhelmed. I'm the dork who said I was in the study for osteoporsis/cancer meds. What if I'm getting the placebo, I'm 39 and after reading all the msgs am scared. I'm not allowed to even take an over the counter calcium. I am in menapause (finished 12 txs chemo, radiation 3 months ago, and my lower back hurts, it's hard to move after even sitting for 20 min. I thought I was deconditioned. Any thoughts? thanks. Julia

Julia
The "feel like an old lady" stuff that I wrote about was: when I would get up from sitting any length of time, my body would ache when I got up and it would take me a few minutes to really get moving. One of my son's friends saw me get up from a chair (I was 48 at the time) and wondered what was wrong with me. When I got up out of bed in the morning, I would "roll" out. Whether it was from the chemo and radiation and it would have eventually gone away or from the bone loss that I was experiencing, I'll never know. You should be able to ask your onc or primary care physician about it. Study or no study, you shouldn't be put in any position that harms you.

...and you're not a dork! All of us are learning this stuff too. Bet you never thought you'd be getting this kind of education!

Take care. Patty

SusanAnne · April 2004

billandpatty said:
Julia
The "feel like an old lady" stuff that I wrote about was: when I would get up from sitting any length of time, my body would ache when I got up and it would take me a few minutes to really get moving. One of my son's friends saw me get up from a chair (I was 48 at the time) and wondered what was wrong with me. When I got up out of bed in the morning, I would "roll" out. Whether it was from the chemo and radiation and it would have eventually gone away or from the bone loss that I was experiencing, I'll never know. You should be able to ask your onc or primary care physician about it. Study or no study, you shouldn't be put in any position that harms you.

...and you're not a dork! All of us are learning this stuff too. Bet you never thought you'd be getting this kind of education!

Take care. Patty

Thank you so much everyone. I will be seeing my oncologist on Monday (right before I fly off to Florida for vacation, yipee!). I've got lots to discuss with him thanks to you all. By coincidence, a nurse from my insurance co. (Oxford-they call every few months to see how I'm tolorating the treatment)(does anyone elses insurance co. follow them through treatment like mine does?) called so I asked her for her thoughts. Right now, the scariest thing for me is whether my bone loss is due to a malignancy (hypercalcemia of malignancy). She said to ask for a simple blood test for electrolytes which will show the level of calcium present. That will make me feel a whole lot better if it's normal. Of course since the dx I've focused so much on the aches and pains that they seem so much worse. This worrying thing sucks!
I'll let you know what happens. Thanks again.
Susan

Osteoporosis

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