Zometa news out of San Antonio....

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited December 2011

    Thank you, Yorkiemom!

    My gut tells me the same thing! I am going to call for an appointment ASAp:) 

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited December 2011

    ihopeg, I agree you should look for another onc. There is no substitute for years experience in practice along with an open mind and staying on top of all the new research.

    I just had to say goodbye to my medical onc who has supervised my care ever since my first BC dx in 2000.  She is moving out of my area to pursue research and assoc. professorship at an East Coast university. She is the one who started me on Zometa back in 2006 long before it was accepted for use in patients other than Stage 4 bone mets.  I am heartsick about losing her but hopefully have found a new onc who has a similar management style and experience.

    I recently had an introductory visit with a medical onc in my area who has a huge reputation and national status in cancer treatment.  I found him to be pleasant and have no doubt he is well experienced and competent.  I became concerned with his patient management style however, when I found he was not open at all to discussion on Metformin, he does not believe in doing any bloodwork or scans, was not sure he wanted me to keep taking Aromasin (I just completed 5 years) and says if it had been him he would not have given me the Zometa.

    I respect his choice of approach which apparently is to go strictly by the book, FDA approved, fully clinically tested  treatments only, no out-of-the box treatment decisions, wait for symptoms or recurrence before doing any testing etc.... BUT that is totally NOT my approach or comfort zone for myself.

    I could tell that if I chose to stay on as his patient it would be a situation of me giving up total control of my care to his way of thinking. There would be no compromising.  I am the first to admit I do not have the knowledge base or experience of a practicing MD, but I fully expect my thoughts and questions to be given respect and consideration.  I fully expect to be a participating member of the team that manages my healthcare, not just the recipient of someone elses choices made without consideration of my input.

    SO...I have an appointment in January with another med onc who I already am feeling very positive about.  She has over 30 years experience and is loved by everyone who works with her or is treated by her.  I will know more after the first visit, but as long as we can have a mutually respectful relationship where there is give and take on both sides, willingness to find a meeting of the minds etc., I think she will be fine.

    The decision of who is going to manage our future medical care is so important.  Intelligence, competence, experience are all important factors, but so is lack of arrogance, being open to new ideas and willingness to admit that the patient ultimately has the final word on their life choices.

  • Ihopeg
    Ihopeg Member Posts: 399
    edited December 2011

    LindaLou,

    I agree with you 100%. The old onc and this new one did not include me in any decisions about my treatment. I feel like if these people were in our shoes, they would want to do everything possible to not have a recurrence!! By the way, te new onc didnt even know my prognosis when she was turning me down!!

  • heathermcd
    heathermcd Member Posts: 142
    edited December 2011

    i am waiting for my oncologist as i type this. 28 stage 2b. I am asking for Zometa and metformin. Yes, i realize what the study found for under 40 patients, but im paranoid and feelblike there must be some benefit. im currently in chemopause. any thoughts?

  • AgentMo
    AgentMo Member Posts: 72
    edited December 2011

    @heathermcd

    Go for what you can get. You are so young and frankly, it's better to have some health issues many years in the future than to die of cancer now. So, me too, I am trying to get everything available. Long-term side effects are of no importance to me. 

  • oaktownmom
    oaktownmom Member Posts: 114
    edited December 2011

    I'm under 40 (just barely!), and pushing for Zometa too (my doctor is fine with it, just need to see if insurance will cover).  What is Metformin?

  • kim40
    kim40 Member Posts: 904
    edited December 2011

    I go for my next Zometa infusion on the 12th.  This is number five!  

    As for Metformin - is anyone taking it?  I've asked my onc about it and he told me that it is still in the trial stage. 

  • antonia1
    antonia1 Member Posts: 135
    edited January 2012

    Kim, do you have any problems on Zometa with your jaw bones? My doctor mentioned including  Zometa in my treatment during initial consultation in October of last year, but she has been silent about it since then, even though i am finished with chemo and rads (still getting Herceptin).

    I intended to ask her to start me on Zometa but today, my husband's oncologist (yes, we are both battling cancer) told me that Zometa causes  necrosis of a jawbone. 

    What have been your experience with Zometa?

  • Megadotz
    Megadotz Member Posts: 302
    edited January 2012

    Antonia,  There were conflicting reports out of the 2011 San Antonio conference concerning Zometa   results for both disease free survival and osteonecrosis.  If you do decide to pursue treatment with Zometa, check with your dentist first to see if you have increased risk for oseonecrosis due to dental disease.

  • quiche
    quiche Member Posts: 262
    edited January 2012

    I have my 4th Zometa treatment today thanks to this board! My doc took me off Zometa in Sept citing a 2010 study, with this new info I was able to convince him to let me continue. You all may have saved my life . . . or at least given me a better chance of survival. I'm forever grateful xoxo

  • antonia1
    antonia1 Member Posts: 135
    edited January 2012

     I saw my MO today and she decided to put me on Fosomax instead of Zometa.  She insisted that I will have the same benefit with fewer side effects.  I am a bit worried, but she was firm in her decision and after all she is a involved in research and specializes in stage III and IV BC.

    Were any studies done with Fosimax and BC?

  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2012

    antonia1 my MO put me on Fosomax months ago because of studies that had been done on biophosonates helping reduce recurrance in premenapausal early stage bc.  I am seeing him today and I am going to ask about the difference in the study for Zometa vs Fosomax.  Also the cost may be to prohibited for me.  Even though I have good covereage I still have deductibles and out of pocket expenses.  Will let you know what my MO says about the two.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2012

    SAw my MO yesterday and asked about the Zometa.  He said that the studies are so knew and that it has not been approved for using it to slow down recurrance and that because of that most insurance companies will not approve it.  He said escpecially since I did not do chemo he really doubted that they would approve it.  He did however say that there are studies that have proven Reclast works to lower recurrance rates and is approved for using it in that way so insurance companies are more likely to approve it.  If my insurance company approves it he is taking me off Fosomax and putting me on Recast infusion every three months when I see him.

  • weety
    weety Member Posts: 1,163
    edited January 2012

    I may be wrong, but I think reclast and zometa are the same thing.

  • weety
    weety Member Posts: 1,163
    edited January 2012

    Okay, so I just looked it up and it says that zometa and reclast both contain the same active ingredient, zoledronic acid.  Dosing is different, but it sounds like they are basically the same.  The inactive ingredients must be what makes them different.  I wonder what difference that makes.

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2012

    Sherry, I have had my first dose of Zometa and it was covered by our insurance, Blue Cross/Blue Shield Kansas.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2012

    Weety I was under the impresion they were very similar I guess it is just what it has been approved for. 

    Yorkiemon my insurance has been good about things but I guess my Dr feels more comfortable asking for the reclast maybe I'll change to Zometa down the line.

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2012

    Sherry, I think somebody said they are the same thing or very similar. So probably doesn't make a lot of difference which one we take. Best wishes!

  • tenaj
    tenaj Member Posts: 1,052
    edited January 2012

    I started on eligard & femera in August '11' had my first zometa infusion in October. I got such a bad reaction. Severe headache, flu like symptoms temp above 103*. Never told my MO was going to discuss with him at my appt in February. Was seriously thinking of asking to stop it but now after all I have read here I want to stay on it. I am afraid of getting I'll again, has anyone else had that reaction to the infusion?

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited January 2012

    tenaj - those sort of reactions are quite normal the first time. I had really bad chest pains (not heart). You have to get them to deliver it slowly which helps. I've had 3 now and I was much better after the first one.

  • comingtoterms
    comingtoterms Member Posts: 421
    edited January 2012

    I am on the third arm of another bisphosphonate trial which ends in April. My research nurse has already indicated  that as with these San Antonio results, she doesn't think this arm will prove to help women who are not fully five years postmenopausal. Because I have been part of this trial for almost three years, I will not drop out based on San Antonio, but what really frustrates me is this "40" flag that everyone seems to like waving around. I am 51 and still menstruating despite chemo and a brief run on Tamox, which I went off due to the outrageous things it was doing to my uterine lining (Yes, I know Tamox doesn't put you into menopause).Why is 40 a magic number? I hate that they cubbyhole us like this. There are a whole lot of women on this site who are in the same position I am. Why don't they do a trial focusing on women in their 40's and 50's who regained menstrual function despite AC/T? I find this worrisome and cannot believe that it isn't of interest to someone in the research field. Obviously, we are still producing estrogen. Is there a correlation between menstruation and reccurence for women in their 40's and 50's? I feel there has to be.

  • Racy
    Racy Member Posts: 2,651
    edited January 2012

    Ladies, I am 49 and post menopausal after finishing chemo last April. I was pre meno before chemo. I am on Femara. Am I a candidate for Zometa?

  • tenaj
    tenaj Member Posts: 1,052
    edited January 2012

    Susieq58- am I right to assume you had similar SE & they got better after each dose?



    I was premenopausal before my BC dx & started on eligard & femera. Does that mean it won't benefit me because I wasnt menopausal at dx? I'm a bit confused now

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited January 2012

    tenaj - after that first dose I was ok. No more chest pains, but I might have felt some flu like symptoms. I did make them dleiver it really slowly though.

  • comingtoterms
    comingtoterms Member Posts: 421
    edited January 2012

    Racy, you aren't considered post-menopausal until an entire year has passed without a period. I thought I was, too, but my period returned ten months after chemo ended!

  • Racy
    Racy Member Posts: 2,651
    edited January 2012

    My year was up last week!

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2012

    Comingtoterms-I hearing the 40 number also. It seems that Zometa is out of the question for me.  As is ovarian suppression with zolodex or lupron in addition to Zometa. I'm being told I'm too close to menopause & that I will & probably have gone thru menopause in the 3 months I've been taking the Tamox..huh? I am 53 & was having regular periods prior to Tamox. My sister is 56 & still not menopausal. I've been told by 2 MOs that ovarian suppression & zometa would be appropriate for me if I was "40". Just doesn't seem like I can make this happen.

  • kim40
    kim40 Member Posts: 904
    edited January 2012

    I'm getting Zometa today!  Just waiting for the nurse to get here.  Wish me luck!

  • comingtoterms
    comingtoterms Member Posts: 421
    edited January 2012

    Good for you, Racy!!! Wahoo!! That puts you in a whole different place!! Coraleliz, my Onc was not at all happy about what began as a "Tamox holiday" turning into: "I don't want to take anything anymore." The last time I was in to see my Research Nurse for the trial, my Onc was "tragically" out of town!!! All the nurses told me I just got lucky because he is not happy w my decision to stop Tamox. I am so with you on this! Isn't "late menopause" a risk factor? Just on a side note: right before I got my first period post chemopause, they did bloodwork which indicated I was through menopause! HaHa! In fact, as the time passes, my periods are coming closer together!! I was definitely not even peri-menopausal when dx at the age of 48. I had a pelvic sonogram last month and there was a follicle on my ovary. Hello, still ovulating!!! None of this "changes" because you take Tamoxifen. I never thought it was doing what it was supposed to do: all I experienced was a tremendous increase in the thickness of my utering lining, intensely heavy periods, cysts, fibroids, etc. I also never had a hot flash or a night sweat, even during AC/T chemo. What do they say when you ask why it would be an option if you were 40? Isn't ovarian function more important than age? Wow!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited January 2012

    coraliz...I just PM'd you.

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