Zometa and follow up testing questions.

udpt82 · February 2013

Hi ladies,

I don't think I have posted on this forum before but have been reading posts. I hope I can get some input.

I was diagnosed in Sept. 2008 (at the age of 48) with Stage III Invasive Lobular CA and had bilat mast, chemo and radiation. Chemo did push me into menopause, but I was on Tamoxifen until my blood levels confirmed it last year. I am now on Arimidex.

At the recommendation of my MO's associate, I started Zometa (after chemo was completed) and had 3 infusions, one every 6 months. Then, my MO said that was sufficient. My only bone density study was done after Zometa and before Arimidex was normal, but that was almost 2 years ago.

I am now wondering if I should have received more Zometa infusions to prevent bone mets. I am curious how long and often women are getting Zometa. Also, how often are women getting their bone density checked? I know that the chemo and the Arimidex can do a job on the bones.

Also, just for curiousity, what dates are people using for their anniversary? I can't wait to say I am five years out. (I was diagnosed on 9/16/08, then chemo, then BM on 2/9/10 and finally radiation).

As time goes on, I have also read different things about follow up testing. My MO does bloodwork but no scans for the breast cancer. (I do have abdominal MRIs every 6 months because I was diagnosed with Lymphoma in April 2007 and it is a "watch and wait". ) I have seen that some women get PET/CT scans and other just bloodwork. Any idea why this is so different or which is more common?

Thanks.

SelenaWolf · February 2013

Can't comment on the Zometa because I didn't have it; not indicated for me according to the protocols of the cancer centre I attended.

I have heard a dozen different ways of defining your "anniversary" date, but I use my surgical date. That was the date that I was, officially, on my way to being "cancer free".

Follow-up testing for me includes complete blood panel and thorough clinical exam every time I see my oncologist. Mammograms are done yearly. Other cans are not done routinely at my cancer centre unless you are experiencing concerning symptoms; largely because some of these scans (i.e., bone and MRI) have a tendency for "false positives". Both can "light up" for things like injuries, arthritis, infection, etc., which can cause undue stress and anxiety. Ditto with tumor marker blood tests; they, also, have a tendency towards "false positives", so my oncologist doesn't use it routinely either.

Celtic_Spirit · February 2013

Similar to you, I was diagnosed in February 2008 at age 48. I had bmx, chemo, and radiation as well. My onc prescribed four rounds of zometa...every six months for two years. My bone density study was done in spring 2009 after zometa infusion #1, and my onc said my bones were in "great shape." I haven't had a bone density (or any other scan) done since. I, too, started off on tamoxifen (2 years) and then switched to Arimidex in December 2010. I'm rather curious about how much Arimidex has affected my bones.

My onc use to check blood work every six months during my first year after chemo. Now I have neither scans nor blood work. I'm glad I don't have scans...I can do without an added dose of anxiety every six months. I don't know why some oncologists scan/do blood work and others don't. Maybe it's the hospital's/medical group's protocol or maybe personal preference.

When I asked my onc about anniversary dates, she said that there's no firm consensus on it, but perhaps I should consider it to be some time around the beginning of my treatment. I chose the date of my mastectomy (March 25), since that's the day cancer left the building!

lkc · February 2013

I always use my Dx date.

I also get Zometa. Have your bone desnity checked gain. If it's good you're ok, and your Onc my rec annual infusions. That's what I do now.

TectonicShift · February 2013

I'm getting Zometa every six months. I think I'll get it for three years. So... six infusions?

KerryMac · February 2013

I was dx in Oct 2008. I had 6 doses of Zometa, 6 months apart, starting around the time I finished active treatment (Aug 2009) and started Arimidex. I had a baseline bone density done then, and I get them every 2 years. The second one showed thinning, I am now osteopenic. This is even with Zometa and regular weight bearing exercise (I run). I am due in May for another one, so I am interested to see what is happening. If I was you I would get one as soon as you can.

As for anniversary, I count from my day of dx, just because emotionally that is the hardest day. Technically, I think the day of last chemo is where my onc counts from.

Rosevalley · February 2013

What an interesting posting. I just had this conversation with my oncologist 2 days ago. I had wide spread bone mets, that are responding great to faslodex and zometa. Iget zometa every month. My MO said one year of zometa is enough. He would give me zometa once a year after that. He would scan if there were symptoms which was a change from his initial recommendation of a PET every 6 months. My tumor markers have dropped every month and are correlating well with the scans. So he said he would check the tumor markers periodically once they hit normal. So it's great to hear some of you are getting the same annual infusions and periodic scans, and that it is working for you. I haven't had a bone density done since 2009; it was great then. I'll ask him about that.

maryannecb · February 2013

I have no mets...and am 7 1/2 years from diagnosis...6 years from finishing Herceptin.

I have been receiving Zometa every 3 months for the last three years....my oncologis wants to continue indefinitely as he can't be sure that is why I am still healthy. I have few side effects and osteoporosis when I started which has improved a little.

I only have scans if i complain about something....last CT was 3-4 years ago, bone scan about a year, only bloods before my infusion, no tumor markers for a few years now.

gillyone · February 2013

I use dx date. No scans without symptoms.

Nancy10102006 · March 2013

I am close to 7 1/2 years out from diagnosis and had my 5th Zometa treatment today. I thought I only would have one more but my oncologist decided to change that to every 6 months for 5 years total. So now I have 5 more treatments. I was a bit disappointed but guess it is best to do whatever is necessary.

Zometa and follow up testing questions.

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