Would Love your 2 cents....

Jean · 10-15-2009, 02:36 PM

Hi All,
I went in today for my 4 month check up with onc.
I asked him about changing me from Actonel to Zometa.
He went on to explain that the benefits were showing great results for those women who were premenopausal (from study) but that women who were postmenopausal a recent study (2009) did not show the same results. That women who were premenopausal who took Zometa from the beginning and not later on (switching) (such as I would be doing) plus I was postmenopausal when starting Arimidex and Actonel. I was on Arimidex for one then switched over to Femara a year later. Have been on AI's for three yrs.

Okay - now for my quesiton to all:
How many of you postmenopausal ladies are taking Zometa and did you do so from the beginning of your adjuvant treatment with AI ?

Also how many of you were taking AI and bisphosphonates then decided to switch over to Zometa.

My onc. said that from the recent study the prevention for bone cancer and recurrance is not there for me....but will help keep my bones strong....I question this ????? I am considering to stop taking Actonel and start with Zometa.

Okay girls - ready set go...

Thanks,
Jean

Becky · 10-15-2009, 03:26 PM

Dear Jean

I started Zometa 3 days after my oophorectomy so I would consider that infusion premenopausal as I had had a menstrual cycle 2 weeks prior to the ooph. A few weeks after that, I started Arimidex 3 weeks after this as my onc wanted the estrogen to come out of my body then lower it to the floor with the Arimidex. (I had been on Tamoxifen up to about 3 weeks before the ooph as docs wanted Tamoxifen out of the body prior to surgery due to the risk of blood clots which can be a side effect of Tamoxifen).

However, obviously at the first 6 month mark when I got the second Zometa, I was clearly postmenopausal because of the ooph. I still get biannual Zometa infusions. My next one is scheduled Nov 30 - right after my onc appointment.

Huge hug and kiss for you.

Jean · 10-15-2009, 03:58 PM

Hi Becky,
Big huge hug right back at ya....

So what do you think? Should I switch over?
Dr. W. is telling me I would not get the benefit (according to study- don't know if you had read that)
of heading off cancer to bone or recurrance.

Somehow in my thinking I think if the Zometa has shown
such great results in the premenopausal area there has to be some benefit to the other group? What are your thoughts. At the very least it will add strength to the bones..but I am getting that with the Actonel.

Not sure what to do.
Thanks,
Jean

Laurel · 10-15-2009, 07:35 PM

Jean,

Can you call your onc and ask what study she is referencing? We can then run it by Lani if it is too complicated for us lay folk. There is an ongoing study that is comparing 2 bisphosphates and Zometa for bone protection from mets. They keep touting the Zometa as such a wonderful preventative. Never heard the pre/post arguement before. Like you I have consdered asking to switch to Zometa.

I am watching the Phillies and the Dodgers, but will try to find something online later. You have raised an interesting question.

alicem · 10-15-2009, 08:20 PM

Hi Jean,

I started Arimidex in June after my chemo ended. I am not taking anything else with it. I had a bone density test and my oncologist did not put me on anything for my bones.

Alice

Becky · 10-16-2009, 05:54 AM

I want to add that the completed studies do reference young, premenopausal women however, my onc keeps me on and has switched many women from my cancer center to Zometa versus Fosamax or Actonel (or whatever they were on).

My mom's onc (my original onc) also switched my mom and she just got her 3rd infusion at the end of August (and she is clearly post, post, postmenopausal at almost 80 yrs old!!)

robind · 10-16-2009, 11:54 AM

I was taking Boniva for osteopenia. Got finished with chemo and after taxol/herceptin combo continued with Herceptin. My oncologist felt strongly that I should be on Zometa. I've been post menopausal for a few years. She felt the benefits to me would be significant...did not feel the Boniva or Fosamax prior to that was doing very much. My dexa scan in a year improved ever so slightly. Her suggestion for me to take Zometa was based on the benefit overall (ie, some positive data with regard to protect from a recurrance - albiet small, but still positive. and, the increased protection to the bones). I wasn't totally on board at first. I researched and contacted www.hopkinsbreastcenter.org and corresponded with Lillie Shockney,RN. She is with the Hopkins school of nursing/Avon Foundation Breast Center. She was wonderful and answered all my concerns and helped me make a more infomed decision. She replyed to my queerie the same day.
Zometa is iv every 6 months...actonel is monthly? Has your last dexa scan improved from the previous one? If not or slightly like me, then that could also be another good argument for taking Zometa has it does have good results overall in the repair of bones.
Contact Lillie Shockney via email (shockli@jhmi.edu) and ask your questions. Best to you and a warm hug. I know each decision we make are not easy ones but we are masters in getting answers! Take care, Robin

harrie · 10-19-2009, 12:27 AM

The risk of ONJ (osteoneucrosis of the jaw) is higher with the IV biphosphanate (Zometa) then it is for the oral (Actinol, Fosomax). So to me, if the risk of bone cancer recurrance is not significant, and the benefits of switching to Zometa is not significant, then I would think it not worth the increased risk of ONJ with the Zometa.

robind · 10-19-2009, 05:59 AM

I also researched the jaw concern...that was actually a huge issue for me. The information I assertained...there is a SLIGHT chance of jaw degeneration. One professional I spoke with told me that in her years of practicing and the use of Zometa, she had only seen one case out of hundreds using Zometa. She felt that the benefit of using Zometa far outweighed the risk of any jaw problem. I also contacted my dentist who researched this for me...he is most conservative. He agreed, taking Zometa has such a small risk of any jaw necrosis that if it were his wife or daughter he would definitely recommend they take Zometa and also felt the benefit was worth the small slight risk. My oncologist at Sloan Kettering has experience giving Zometa and the research she discussed said the other benefits are compelling and I do feel strongly that she wouldn't encourage her patients to take this drug if she and her collegues all didn't feel it was safe.
A friend through a friend, stage 1V breast cancer had holes in her bones from metatasis. Although her cancer has come back, she had tests that revealed that she no longer has those holes and her bones are actually great. They clearly attribute that to her having been on Zometa, I think she was receiving every 3 months.
I hope this has been helpful in some way. I have my second Zometa treatment in a few weeks and will probably be due for a dexa scan in a few months. I am hoping that my osteopenia and slight osteoporosis has improved even if slightly because all the years that I was taking Fosamax and then Boniva...did virtually nothing.
Good luck. Robind

Jean · 10-20-2009, 10:21 PM

Thank you all my dear sisters....can always count on you wise gals to help.

Becky I had to role with laughter on post post post...hey let's all get to that spot!!!!

I just had a Dexi scan on Monday and I am anxious to have the report. I have decided to switch over to the Zometa.

Robin, I will take any % no matter how small to prevent recurrence. My thoughts are (I may be wrong and I hope I am not) even though the reports are demonstrating for the pre-menopausal to achieve a impressive % of non-recurrance my mind cannot accept why it would not be the same for post? The bone strength and building is happening thats for certain.

So in weighing all the information I have set up the first treatment for 10/29....

Thank you for your input! Will keep you posted about scan results from last year while on Actonel.

Hugs,
jean

harrie · 10-20-2009, 11:08 PM

Jean, are you currently dx as osteopenia and have your past DEXAs shown a steady decrease in bone mass?

I am presuming your primary reason for switching to zometa is for the prevention of a recurrance to the bones. Right?

Maryanne

suzan w · 10-21-2009, 01:37 PM

Hi Jean!! I was going to ask how your DEXA scans are, when I saw that Harrie just did !! I finished almost 2 years of Forteo (daily self-injection drug for osterporosis) and then a once a year Zometa infusion. I saw good results with the Forteo...and hopefully the Zometa will keep my bones at the current 'level' with no forther degeneration! I had been on fosomax/actonel for 10 years before breast cancer...with worsening bones every year. The chemo/arimidex was devastating to my already cruddy bones...so that is why I decided to do what I did!!! xo Suzan

sally · 10-21-2009, 05:08 PM

Hi Jean, I started Zometa when the cancer spread to the bones. I get it every 28 days. Currently on Adriamycin/Zometa Sally

Barbara2 · 10-27-2009, 11:46 AM

I was post-menopausal from the get go.

March 03 started Arimidex, still taking it.

October 05, tests show osteopenia probably from the Arimidex.(Bone density
excellent before cancer.) Started Actonel which did improve
bone density, but not back to "normal".

May 08, onc agreed to let me try Zometa because of positive news from
studies, even though I was postmenopausal. I get Zometa every
6 months. No more ostopenia.