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kimberlyC 
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Joined: Nov 09 2008 Location: United States Status: Offline Points: 14 |
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 Topic: ZometaPosted: Nov 09 2008 at 3:39pm |
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Hi, My name is Kim. I am 45 and was diagnosed with stage 1 triple negative breast cancer last year. I had a lumpectomy followed with four rounds of AC and 4 rounds of Taxel and 35 rounds of radiation. I finished treatment 8 months ago. At my last oncologist visit my doctor recommended I start Zometa therapy. Has anyone else had a doctor recommend this? As far as I know it has not metastasized, but he said it might help prevent it from moving to my bones? They want me to begin in December and I am researching anything I can about it before I make my decision. Thanks. My prayers are with you all.
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 09 2008 at 4:34pm |
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Hi Kim,
First...welcome to the site. Wish you would have found us when you were first dx. My daughter Lori (46 now) was dx last June, 2007.
I have heard of some of the gals taking Zometa. I was reading the article on it and Fosamax, which is what I have taken for many years (generic form now), and they are both bisphosphonates. However Zometa is used as a support medication to treat sypmtoms of cancer, and I know it is an infusion. I beleive that some of the gals may be taking that.
Fosamax states that you are more likely to develop osteonecrosis if you have cancer or have been treated with chemotherapy radiation or steroids. Zometa also has that side effect.
I sure hope some of the gals chime in here and reply to your post. May I ask where you live? We live in Altoona, PA....home of the bowling alley and Texas Hot dog Shop where our President Elect Obama stopped during his campaigning.
 Hey, just a litle history lesson with the welcome Kim
 Here are the links for the Zometa and the Fosamax. Many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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kimberlyC
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Joined: Nov 09 2008 Location: United States Status: Offline Points: 14 |
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Posted: Nov 09 2008 at 4:51pm |
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Thanks so much for replying. I live in Green Cove Springs, Florida. I have three daughters 24, 22, and 19; two grandchildren little girl 2 years old and 1 boy 7 months. Last year I was diagnosed in June also. My last Oncology visit scared me a little. Do you take Fosamax for your cancer? I thought there wasn't anything else to do after chemo for TNBC.
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Nov 09 2008 at 6:10pm |
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Kim,
It is my daughter Lori who was dx TNBC. I have been posting on the site for well over 16 months now...for her...and since I have made so many wonderful friends....they are now stuck with me
I am 67 and have been on Fosamax for about 5 years to help ward off osteoarthritis. I was in the beginning stages, and it has not progressed any further. I'm sorry if I didn't explain this more clearly in my first post.
My daughter Lori, (whose stats you will find at the bottom of my post), has 3 children. Oldest daughter 21, daughter 18, and son 15. Lori teaches second grade.
Did you read the articles I sent to you? There has not been any other treatments for TNBC following chemo and rads. I believe docs are now recommending this to increase your bone density also. From what I have read it was for patients with bone metastisis. However, it also protects the bones. I have another link for you to read. I know that if Connie was on the site tonight, she could explain it much clearer than I have.
Hope I haven't confused you?
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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EllenG
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Joined: May 15 2008 Location: United States Status: Offline Points: 7 |
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Posted: Nov 10 2008 at 3:26am |
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Hello Kim:
I was dx in 9/07 and had dose dense AC & T, lumpectomy 1/08, followed by dose dense radiation (21 hits). Finished treatment 3/08. I am 59. I asked my med onc who is at NYU Cancer Center, about Zometa as it had been recommended that I discuss it with her by another med onc, who is at Columbia Presbyterian: both are top notch. My med onc @ NYU said "it is not standard of care" and is controversial. Also, it is a little overly agrressive for me at this point. Good luck in making your final decision, Ellen |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 10 2008 at 1:09pm |
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Hi Kim and welcome.
I don't take Zometa. I am interested in seeing how you do on it and if you feel more secure having access to it. Why did your last vist with your Onc scare you?
Kim also I would like to ask how long you will be on the Zometa?
thanks,
Edited by trip2 - Nov 10 2008 at 1:30pm |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 10 2008 at 3:06pm |
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Well this just had me so curious so I did some looking around. I could remember this coming up awhile back. The best I can tell it is used for hormone positive breast cancer.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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kimberlyC
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Joined: Nov 09 2008 Location: United States Status: Offline Points: 14 |
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Posted: Nov 10 2008 at 4:40pm |
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I guess the reason I got a little scared is most everyone in my oncology office from the beginning said,"Once you finish the chemo and rads consider yourself cancer free. Its gone." Now a few months later we're talking about possible re-occurrences. Don't get me wrong, I've known all along it is possible, but they've been so convincing that its gone and now to bring up the possibilities is a little scary. Also, taking some thing different always makes me a little anxious. Then when I began researching the Zometa everything I read was how people who had metastatic breast cancer were the ones who were on it. I couldn't really find anything about taking it to prevent it. Thats why I asked if anyone else had heard of it. A little history. When my dad had Brain cancer they didn't tell him that it was incurable. They told him they got it all. And we weren't to tell him differently. We had just lost our mother a few weeks earlier and insisted they be upfront with us. He died with in five months. Now I guess I question if my doctors are always honest with me. I try to take control of my health care and find out all I can so I can make informed decisions that are the best for me and my family. Thanks for letting me vent a little; these are things I don't like talking about with my family.
Also, I don't know how long he wants me to take it. Sort of forgot to ask that:) and they will either do it every two months or every six months. He is checking to see what is recommended. He also had to talk with my insurance company to see if they would cover it. I received a letter from ins. yesterday and they said yes with contingencies. Basically, after I take the first dose they will make their final decision. Edited by kimberlyC - Nov 10 2008 at 4:48pm |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 11 2008 at 6:10am |
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Kimberly honey I'm sure you are cancer free with no evidence of disease!
Hopefully we achieve that thru our treatments. Now with the high rate of recurrence they will watch you to make sure you get thru those first few years and then you should be good to go.
I highly doubt they would be secretive of knowledge having to do with your health. If so I would think you and your family would become quite rich after you won your law suit!
I know there are others on Zometa. In the short time that I read about it yesterday though it appeared it was for hormone positive gals to help protect their bones. I will look into it some more, I was just short on time.
But the article I read didn't say anything about mets though that I can recall. I thought it had to do with the meds they take after treatment that is hard on their bones so this is sort of a protection.
Kimberly that is such a heartbreaking story about your father and mother. I can see why you might not be totally secure with the information given to you. I have heard of that practice before but the family is told.
You can vent anytime and your concerns are understandable. That is one of the reasons this forum is so helpful because we can come here and talk about what's on our minds, our insecurities, whatever it is and the women and caregivers here get it. Remember our families and loved ones at home think we are cured and should be getting on with life and not even talking about it anymore.
Your family has been thru alot with your mon and dad and your diagnosis.
That is tough to get through.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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suzannek
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Joined: Oct 16 2008 Location: United States Status: Offline Points: 67 |
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Posted: Nov 15 2008 at 6:48am |
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Hi Kim I am fairly early on in my journey with TNBC. I've had 2 surgeries and will begin chemo (4xAC, 4xT)12-02. While talking to my oncologist, she pointed out that here (University of Michigan)they have a research study giving Zometa to newly diagnosed patients with the idea that it might prevent bone metathesis because it will be difficult for the cancer to establish a toehold in a bone that has a defense against calcium reabsorbing. BC in general has a tendency to target the bones if it does indeed spread. The patterns of spreading might be different in TNBC. They don't know for sure if Zometa will stop bone cancers from occurring-they do know it slows down or eliminates existing ones so my feeling is, if you can tolerate the drug, you might as well take it.
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Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3 Lumps removed 10-07-08, 10-27-08 nodes clean: Began chemo 12-2-08 4xAC, 4xT dose dense 3 weeks radiation http://suzannekesten2.blogspot.com/ |
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kimberlyC
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Joined: Nov 09 2008 Location: United States Status: Offline Points: 14 |
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Posted: Nov 15 2008 at 1:52pm |
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Thank you for the info. I am seriously considering trying it. The side effects sound similar to those I had with the shot they gave me for my bone marrow on the day after my chemo. Lots of bone aches. Hopefully they won't be as bad or at least will only last a few days after receiving it. I'll keep you posted on how it goes. I go in December for my first dose. Hang in there. It is a very rough journey, but we do survive it. Keep your faith up and stay positive. Recently I told someone it reminds me so much of child birth. When you are in the midst of it you think and feel like you are going to die, but once you finish it you forget how bad it was and realize if you had to do it again you could. I was so thankful that my doctors listened to me. I had my chemo every other week and on my 7th dose I really thought I was going to die if I took the dose the next morning. When I got to my doctors office he asked how I was feeling and I shared how bad I felt and the symptoms I was having and he immediately postponed the chemo for that day. With an extra week I was able to go back and take the 7th round and two weeks later my 8th and final round. God was good. I'm not sure why I thought I should share that with you, Sue, but I know it is important to be honest with your doctors. It is the one time as women we can share our complaints and shouldn't feel guilty or like we are complaining. I'll be praying for you along with many others as you continue this trek of the BC journey.
Kim |
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