More Zometa Drama!Help Requested!

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Pure
Pure Member Posts: 1,796
edited June 2014 in Stage III Breast Cancer

Hi there,

I went to my oncologist this week. A day after leaving the appt she called and said b-c of recent studies she feels zometa is not good for me and that it can cause some long term issues with no real help for me in the short term.

I told her I knew of the study but I also know of 2 other studies that zometa showed promising results and that this was only one study. Also, I felt it would be good for me at the very least b-c I was in menopause and needed it for my bones. She said that was only true if I took a bone densisty test and it showed decrease in my bones. If my bones are fine it does nothing to help prevent bone loss in the future.

I am curious what others are being told by their docs.

Any help would be greatly appreciated....

Comments

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2011

    Hmmm... You are already in menopause and it was never suggested that you have a bone density test before?  I'm shaking my head.  For the several years leading up to my diagnosis my doctors kept suggesting a bone density test and I refused because I didn't want to take any of these meds despite my petite stature.

    I would get a second opinion from another oncologist and definitely see a second ob/gyn as well.

    For the record, I'm taking the Zometa, 6 months/ 3 years, and I have osteopenia, which my MO thinks is "nothing."  I'm also 54 and doing Lupron and Tamoxifen.

  • tlundy
    tlundy Member Posts: 142
    edited May 2011

    Hi Pure,

     I just had this conversation with my onc yesterday.  I asked about it because I started Femara last month and am concerned about bone loss (my mother has ostopenia and my grandmother had osteoporosis). They are ordering a bone density test and will only prescribe if I have signs of either...

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

    So, I needed a BMD test before I started Arimidex and I am having them every 2 years or something. I am due one this month, so we will see if I have had any thinning. I would think with you being on Arimidex you would be getting them regularily.

    Also, the Z-fast study showed that upfront Zometa (before there were any problems) actually prevented osteoporosis when on Arimidex. So it could help prevent future bone loss.

    My Onc's take on it is - it may or may not help with reoccurance (she wasn't sure either way), if I wanted to stop I could but she thinks at the very least, it will help protect my bones.

    If Zometa is something you feel you strongly want to continue with (I am) I would bring up the Z-fast study with her, see if you can convince her on that angle. 

  • everyminute
    everyminute Member Posts: 1,805
    edited May 2011

    Hi! 

    I had a hysterectomy right after chemo (instant menopause) and went on tamoxifen.

    I begged my doc for Zometa based on early studies and was going to try to get into the study but my onc decided it would be easier to give it to me as a preventative for osteoporisis BECAUSE of the hysterectomy (even though she didnt feel too strongly about it because she felt tamox may actually protect bones and didnt feel too strongly about the early Zometa studies) So - in a nutshell - she gave me 2 years of Zometa every 6 months and said no more. AND THEN...

    I had a dexa scan and at 41 have osteopenia AND border line osteoporosis in my back.  We were all floored.  I am a runner, I lift weights AND have been on zometa for 2 years!!!

    So I get to keep Zometa indefinately - hopefully it DOES reduce recurrence as well as protect me from my back breaking.

    I am now taking calcium 2xs a day as well.

    IT is a mystery how I developed osteopenia/porosis so young even with preventative zometa (which it is approved for so I don't know why doc told you it wont do any good) and tamox but after I started thinking about it I probably had a problem PRE cancer.  At 16 years old I was 5 foot 7 and a half.  At 35 I was 5 foot 6.  Pre chemo at 39 I was 5 foot 5 and half.  I mentioned it to my GP at the time and he said it was likely due to a car accident I had and two pregnancies but now I wonder....

    long story short I got my zometa!

  • YATCOMW
    YATCOMW Member Posts: 664
    edited May 2011

    I just had my appt last month and asked my doctor what he thought and he said I should stay on it.....I was every two months and we are backing it down to every six.

     Jacqueline

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

    my onc never suggested zometa to me evern though she was doing clinical trials for zometa.

    my bone density was way high prior to starting chemo....etc....i had been a serious runner and drank a lof of milk for 30 years... (  had a baseline when i was 49..right before dx for cancer)  over the course of five and half years while on arimidex....my bone density went WAY down...i had it checked every 2 years. after finishing the armidex....adding calcuim and starting to walk 45 minutes every day....my bone density totally went back up and improved to what it was when i was 49...prior to armidex...etrc.  i was shocked it had improived but my bone doc said that it improved because i was off the arimidex..(he said you needed to be that drug) of the walking and all the milk i drink. 

    additional note; i was in surgical menopause at age 43 and had been on estrogen patch 5 years prior to my diagnosis of BC.  clearly, the estrogen i was taking for 5 years highly likely fueled my breast cancer.  Cry

    take care** 

  • JudyO
    JudyO Member Posts: 225
    edited May 2011

    I think this is definitely one of those things everyone doesn't agree on. When I was dx my onc said new studies were due and he was sure zometa would be added to the mix. After my chemo was done I brought up the zometa. He was reluctant but sent in a request to my insurance. They denied it since it hasn't been approved as the current standard treatment. I then offered to pay for it privately and I couldn't get him to give it to me. I started this journey with ostopenia and now have osteoporosis. My back is really bad. I am 59. I have had bone density tests every 2 years since I was 50. I am on fosemax but can't get him to do the zometa. He feels the benefit hasn't been proven.

  • clariceak
    clariceak Member Posts: 752
    edited May 2011

    My onc wasn't very enthused about Zometa back in 2009.  She ordered a bone density test after chemo and it indicated I needed Zometa for my crappy bones.

    I do think more oncs are being cautious about the use zometa due to the serious side effects, such as the jaw bone crumbling, which seems to be happening at much higher rate than originally thought. 

    I'm willing to take the risk because at stage IIIC, I've told my onc I'm willing to try almost anything.

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

    additional note...not sure if it will be helpful or not....my bone doc had me on low dose of fosamax while i was on the arimidex.  now, i don;'t need any of that bone stuff because my density improved so much after i stopped the arimidex.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited May 2011

    I'm probably not much help here, I've never been offered a BMD test or Zometa even though I'm on AI's.  My last dr said at my age we could just watch it and add vit D & calcium.  I just met my new onc yesterday so I'll be asking about this...thanks girls, love this site! 

  • lkc
    lkc Member Posts: 1,203
    edited May 2011

    I am a zometa girl very 6 months.  I pushed for it after exhausted research. For me it was the right decision.

    I think there are a few things going on related to Zometa:

    Confusion regarding some conflicting data in previous trials

    Not FDA approved for BC, only approved for Osteopenia/Osteoporosis... So Insurance  usually won't pay unless there is diffinitive Bone Loss

    Scary Side effect; Jaw necrosis (may be mitigated by other factors)

    Drs typically are extremely conservative regarding recommending a Rx " Off Label" .

  • NancyD
    NancyD Member Posts: 3,562
    edited May 2011

    My onc is also in the "no Zometa" camp. My bone density scans have been OK, showed a very slight loss since starting Arimidex, but not enough to be concerned about, he said. I'm not osteopenic, yet., so insurance won't cover it.



    My own feeling is, I have some dental repair work I really should have done before I get into possible problems with jaw bone necrosis. Better to get that out of the way before anything else. I'm hoping when I have another bone density scan in a year it hasn't tanked.

  • cathmg
    cathmg Member Posts: 278
    edited May 2011

    My Onc was cautiously optimistic about giving me Zometa until the most recent study showing it to have no benefit in preventing recurrence for premenopausal women (46 and still premen). He is no longer recommending it for me, so I take vit D, calcium, and lift weights.

  • tlundy
    tlundy Member Posts: 142
    edited May 2011

    I have a question about Zometa and hoped someone could shed some light.  As I posted previously in this thread, my onc is doing a bone density before initiating any bone strengthening treatment.  In our conversation he did not say Zometa, though, he said it would be Reclast (? on spelling).  Does anyone know if this has the same potential benefits in terms of mitigating recurrence as compared to Zometa?

    Thanks!

  • NancyD
    NancyD Member Posts: 3,562
    edited May 2011

    II think it's an equally effective bisphosphonate. They're marketed under several brand names.

  • Pure
    Pure Member Posts: 1,796
    edited May 2011

    Thanks or all this feedback...I wanted to share that Duke just concluded a study or stage 4 girls-a shot...The results will be out soon. I will let you know! I the results are good they will open the study up again. Duke is a research hospital so I try to ask each time about what's on the horizon.

    These are all GREAT suggestions. Thank you so very much! I will let you know what happens!

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