Zometa or some drug I can't remember?

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caaclark
caaclark Member Posts: 936

I am currently 45- was 40 when diagnosed with stage III bc.  I found out around age 43 that I have osteoporosis.  Took Boniva and could not tolerate it.  Moved on to Fosamax, which was fine until 2 weeks ago when I had horrible se's.  Oncologist agrees that Fosamax is no longer an option.  I will be going for a Dexascan (haven't had one in a year or so) but my oncologist mentioned that I have two options related to medication.

1. Yearly Zometa infusion or  2.  A shot every 6 months of a newly approved drug for osteoporosis.  I forget the name of it now but does anyone have any thoughts about which would be better.  Just trying to do my research before my dexa results.

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2011

    The newly approved drug might be Xgeva.  I think it's approved for metastatic only though, but I may be wrong.  The big advantages are that it doesn't seem to have the danger of causing renal failure, and it's a shot rather then an infusion.  Women who are on it say the side effects aren't as bad as the Zometa, which can make you feel like you have a bad case of the flu for 2 or 3 days.  So if you can get the Xgeva and you insurance approves it, that to me would be the way to go. 

    I've been on monthly Zometa for about 3 years now, and I've never had and side effects from it.

  • caaclark
    caaclark Member Posts: 936
    edited September 2011

    Thanks, Marsha!!!  That is the drug my onc. mentioned but I just couldn't remember the name.  Now I can do some research on it.  I guess you are right.  If my insurance approves it maybe that's the way to go. 

  • Octobergirl
    Octobergirl Member Posts: 334
    edited September 2011

    Hi Carol,

    I have osteoporosis and my DEXA in Dec. showed I had a 7% bone loss last year despite having had  Zometa infusions every three months. In June, my onc changed my protocol to Xgeva (Denosamab) every three months in an effort to reverse the deterioration. My insurance did approved Xgeva and I had my 2nd injection last week. I only experience mild achiness from Xgeva and Zometa..no problem.

    I see you were diagnosed in '06.  Have you taken Tamoxifin or aromatase and, if so, for how long?   

    I have begun to really feel the effects of osteoporosis despite having been very active and strong all my life. My onc says there is a growing group of women who cannot continue on aromatase inhibitors because of osteoporosis and/or heart complications. It scares me and I'm now realizing  bone loss progression will be as devastating as cancer progression. Unchecked, both are painful, debilitating and will lead to death.

    Thee is an aggregated study now linked on BCO.org homepage under "Research.." regarding survival rates for aromatase inhibitors and Tamoxifin. I will be asking my onc about switching to Tamoxifin (which does not destroy bones) since survival rates increase for women who have used both hormone blockers instead of staying on aromatase inhibitors for 5 or more years.

  • Jorf
    Jorf Member Posts: 498
    edited September 2011

    Octobergrace: If someone is telling you that you've had 7% bone loss in a year then you need to run-not-walk to another opinion from someone other than your oncologist. Oncologists specialize in oncology, not in bone metabolism. Please ask for a referral to whomever is the bone expert in your area (your oncologist knows who it is).

    First of all, it is highly unlikely that you've had a 7% loss in bone density - it is most likely an error in the execution or the reading of your DXA reports (I can't even say how many times I've caught HUGE errors on DXA reports signed by radiologists). And if you actually have had a large loss then you need someone to figure out why (especially if you've been on Zometa). 

  • GramE
    GramE Member Posts: 5,056
    edited September 2011

    My sister, who is 6 years younger, and never had BC has full blown osteoporosis.    After extensive testing, she was found to be gluten intolerant.   I have not had the test done yet, but have a DEXA scheduled next month.   

  • sam52
    sam52 Member Posts: 950
    edited September 2011

    Get your parathyroid hormone levels checked...........hyperparathyroidism causes osteoporosis, as it did in my case. It seems to be very under-diagnosed and also quite prevalent in those dx with bc.

    Despite 3 years of alendronate (Fosomax),I developed ever-worsening osteoporosis. A (benign) tumor in one of the parathyroid glands threw the calcium thermostat out of whack and leached calcium from my bones.Surgery has corrected it.

    Don't be put off if you are told that your serum calcium levels are normal - if your PTH levels are high,then you most likely have parathyroid disease.

  • Octobergirl
    Octobergirl Member Posts: 334
    edited September 2011

    I have an appt. to see an endocrinologist at Duke mid-October for input regarding my bone loss, osteoporosis and decision regarding continuation of aromatase inhibitors or Tamoxifin. Endocrinology will work with oncology to look at all sides of the issues. Thanks for all the input and info here.

  • Linda54
    Linda54 Member Posts: 2,689
    edited September 2011

    also have a 24-hour urine collection test done....if it shows high calcium levels in the urine then it could be a kidney condition called hypercalciuria. I was put on a diuretic to decrease urine calcium excretion.  My parathyroid and D levels were good.

    I tried a boniva pill last week and had terrible flu like SE.  I have been researching the mineral stronium and have found that it does increase bone density. I placed my order today. After all I have read on the osteo meds I do not want them in my body. I will give the stronium a try.

  • Octobergirl
    Octobergirl Member Posts: 334
    edited September 2011

    Thanks for the good info and advice. I didn't mean to hijack Carol's topic. I apologize, Carol, and will start a new thread with any info from my appt. next week.

  • caaclark
    caaclark Member Posts: 936
    edited October 2011

    October-No need to appologize!!!  I just wanted to know the name of the drug but I am glad you posted since I am able to see other input about osteoporosis.

    I just went for the dexa this week-put if off for a few weeks.  I will get results soon and will then decide what to do next. 

    I was on Tamox for about a year, then had hysterectomy, am currently on Femara and have been for about 3 yrs.  (I just noticed I didn't answer you quest.)

  • otter
    otter Member Posts: 6,099
    edited October 2011

    Hi, Carol,

    As you look for information about Xgeva, you might also want to search under the drug's other names.  The drug is a monoclonal antibody that goes by the name "denosumab" -- that's its official scientific name (sort of). 

    "Xgeva" is the brand name under which denosumab is marketed for prevention of "skeletal-related events" in people with bone mets.  It's not just used in women with bone mets from BC, but men and women with bone mets from other types of cancer, too.  The approved dose of Xgeva for bone mets is 120 mg injected subcutaneously every 4 weeks.

    Denosumab is also approved to treat osteoporosis in postmenopausal women who are at high risk for fractures.  It's marketed under the brand name "Prolia" for that use.  The approved dose is 60 mg injected subcutaneously every 6 months.

    The application that's relevant to most of us is a brand-new one.  On September 16 of this year, the FDA approved Prolia "... to increase bone mass in patients at high risk for fracture including androgen deprivation therapy for nonmetastatic prostate cancer or adjuvant aromatase inhibitor (AI) therapy for breast cancer."  It took awhile -- more than a year -- for the FDA to agree with the manufacturer's claims that Prolia was safe to use in women with non-metastatic breast cancer.  There was no question from the clinical trial data that it would prevent or even reverse bone-thinning. I don't know this for sure, but I think the dose that will be used for treating or preventing osteoporosis in women on AI's will be the same as the other osteoporosis indication:  60 mg injected s.q. every 6 months.

    Here's a link to the National Cancer Institute web page that describes the FDA approvals for denosumab (a.k.a. "Xgeva" and "Prolia"):  http://www.cancer.gov/cancertopics/druginfo/fda-denosumab

    Now we have lots of choices for prevention or treatment of osteoporosis.

    otter

  • caaclark
    caaclark Member Posts: 936
    edited October 2011

    Thank you so much, Otter!!!!  I appreciate the info!!

  • otter
    otter Member Posts: 6,099
    edited February 2012
  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    Had my first injection of Prolia yesterday. Other then mild aches not a problem so far.

  • katymom
    katymom Member Posts: 141
    edited February 2012

    I think I posted to you on another thread.  Please keep me posted about the prolia.  I am probably going to do it soon.  I've been on femara 4 1/2 years and my bones are suffering.  The onc says he's used xgeva/prolia for more advanced patients with little side effects.  Let me know how things go......

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