Any of you taking Zometa a few years AFTER treatment?

Vic · 11-12-2008, 12:34 PM

Hi,

My oncologist suggested, on my most recent visit, that I start Zometa infusions once every six months for three years due to an article she gave me on Dr. Michael Gnant's work "showing Zoledronic acid reduces events in all of the subcategories, not only bone metastasis."

It has been four years since my treatment ended and I'm wondering if any of you on this site started these infusions post-treatment with this gap in their timeframe? I also was told that I must expect my insurance provider NOT TO PAY for this since I don't have osteoporosis and it will be about $2,000 per infusion at the hospital (30 min. of hydration/30 min. of Zometa) compared with $1,300 from an off-site location.

Thanks for sharing your history and experience with this. I want to do everything I can to prevent a recurrence and I wish my oncologist had told me about this study earlier, as I hear Zometa infusions are now being given to women right after they finish treatment.

Vicki Z

sassy · 11-12-2008, 09:23 PM

Vicky,

I was fortunate to start Zometa after about one year of treatment. In order for my insurance to pay, we did a baseline bone density scan, then did another 6 months or so later which showed osteopenia, and decrease in bone density. My insurance then approved it.

Hope this helps.

Henny · 11-12-2008, 10:14 PM

I had the first Zometa infusion a couple weeks ago. I've been off herceptin for 3 months after one year on it. I was thinking that we would have to mention that I was osteopenic but the office said to hold that card until they deny the claim and use for an appeal.

Today I got the letter from my insurance company. The list price was $2128 but the provider had to adjust it to $1205 and the insurance paid the total amount. I own nothing! I was flabbergasted. So I guess you never know until you try

Henny

Vic · 11-13-2008, 09:44 AM

Hi Sassy and Henny,

I really appreciate the feedback on the cost and timing! I was shown to have osteopenia a number of years ago, but my recent bone density scans have been good, for which I'm fortunate.

The nurse said she would submit it to my insurance, but nine times out of 10, she said they deny it, and I can always talk about a discount for a cash-out situation. I'll keep you posted on how things go and thanks again.

Vicki Z

Colleen007 · 11-13-2008, 02:16 PM

Hi Vicki,

I was diagnosed with bone mets right from the beginning, so I have been on Zometa since December of 2005. I went to Dana-Farber in June for another opinion (totally supported by my oncologist who I LOVE!), because some women in my support group with bone mets stopped Zometa after 2 years (and I was halfway through my 3rd year). The concensus was that instead of getting it every 6 weeks, I would get it once a quarter...the feeling is that my bones are pretty hard right now, but they want to keep them that way to keep the cancer in the bones at bay (I have been "stable" in the bones for almost 2 years now).

I know that you don't have bone mets, but maybe you will still find this helpful. We think it is the Zometa that has kept things stable in the bones for this long. Good Luck!

Vic · 11-13-2008, 05:52 PM

That's terrific, Colleen, that you're stable and the Zometa is doing such wonderful things for you. Yes, I found your comments really helpful and I do want to get my first infusion going. As I said, my oncologist is setting it up for every six months for three years.

From what you mentioned about what you're doing at Dana-Farber and now with Dr. Gnant's study with Zometa, you're both showing great results and proving this may be another added benefit to overall healing and health.

Barbara2 · 11-13-2008, 07:33 PM

Yes, I started Zometa this past May, 5 years after finishing treatment. I asked my onc if I could take Zometa instead of the Actonel which I had taken for a couple of years. (Taking Arimidex had depleted the bones which then led to osteopenia.)

The Actonel did help, but I still had some bone loss in a few areas. When I learned that Zometa may help prevent bone and possibly other mets, I asked if I could take it, and he agreed I could.

In Oct. I had a dexa, scan. I was pleasantly surprised to learn that the scan was "normal." I asked the nurse who called me, if the report said anything about osteopenia, and she said, no, it's just normal. I was shocked.

I do have rib discomfort that comes and goes, but if the aching is not from mets, I have no complaints what so ever. I hope to continue with the Zometa. It is my understanding that it will be given twice a year. I am scheduled for the second dose, six months past the first infusion.

suzan w · 11-14-2008, 01:33 PM

I am taking a daily injection of forteo for osteoporosis and then will have a yearly Zometa infusion. This is for osteoporosis but I feel good about all that I have read about this perhaps helping against bone mets.

11-14-2008, 07:37 PM

JUst had my 6 mo checkup (I got an "A" !) and discussed Zometa w my Onc. She said that we "will see" what my dexa is next month (was dxed osteopenic in Dec 06...forget my T score?!) she will decide. I HATE taking the monthly drugs..I'd rather have flu symptoms every 6 months than once a month~
My PC is down and am laptop impaired...miss you guys!
HUgs Marcia (alias Soccermom)

Vic · 11-18-2008, 11:09 AM

Such great feedback! Thanks all you wonderful women around the globe!

Barbara, it's been a while since I've looked into this, but what is PTEN, something you said showed a positive for you?

I'm seeing a genetic counselor, upon my oncologist's referal, and do you think this is something I should ask to be tested for?

Thanks,

Vicki

StephN · 11-18-2008, 01:31 PM

Hey Vicki -
Having taken Zometa for about 3 years after my mets diagnosis, I know something about this drug. I was getting it every 3 weeks for a LONG time. Then we started to cut back to 6 weeks, then every 3 months - look at my sig.

I would have to look up the dose, but I got it on the basis that my Dexa as low for a woman my age, and onc felt the Zometa would help keep my bones NED, which it seems to have done. It also helped my bones regrow to where my scans became normal or better - especially spine.

You might ask about the dosing difference for mets versus as a prophylatic/bone rebuilder. There also is another name for this same drug that they have been advertising for osteoporosis. I guess the difference is the dosing and that is why they can give it another name for a more generic use.

The Zometa was easy on me and I tolerated it well. Takes only 15-20 minutes to infuse.

Barbara2 · 11-18-2008, 08:50 PM

PTEN gene is a human gene that acts as a tumor suppressor gene, (i.e. the protein encoded by this gene helps regulate the cycle of cell division, preventing cells from growing and dividing too rapidly). Mutations of this gene contribute to the development of multiple advanced cancers.

The PTEN 13 marker applies to Herceptin. When PTEN is low, absent or the gene is present but mutated, herceptin is unlikely to work. If you have already had herceptin, there would be no need to check the Pten now, in my opinion.

Here is an easy to understand explaination from a 2004 article:
http://www.genomenewsnetwork.org/art...cancerdrug.php

Vic · 11-19-2008, 10:00 AM

Hi Barbara,

This was "outstanding" work by you and I really appreciate and have printed your article and note so I can take it with me to my appointment.

One question on the testing: Did they analyze your tumor (as noted in the study) as one of the paragraphs states: "At the moment there is no commercially available test to detect the level of PTEN in tumors, and it could be years before such a test is developed..."

How was your PTEN level tested, Barbara?

As an fyi, I had Herceptin for only 12 weeks in 2004 as it was not yet approved for early-stage bc.

Thanks for the input and again I appreciate your response,

Vicki

Soccermom · 11-19-2008, 12:11 PM

Vic, just got the notice from Her2support that you sent me private message but I couldnt actually find it when I logged in...strange?! I have my 'puter working again...

Please click on the this link for an in depth look at who might a candidate for genetic testing...

http://www.facingourrisk.org/heredit...ounseling.html

The first and most important step is the counselor...

click on this link to find a CERTIFIED (most important) genetics counselor...
http://www.nsgc.org/resourcelink.cfm

I'm a single mom at the moment so I wont be online as much but feel free to email me at ...S O C C E R M O M 4 F O R C E A T A O L (appropriate formatting of course!).

Hugs ,Marcia

Vic · 11-19-2008, 12:42 PM

Hey Girl, this is tight! You are amazing and I'm printing this up right now. Couldn't find my guy (Dr. Stephen Lipkin) on the genetic counselor listing, but will do some more research.

Thanks for bouncing the ball back to me. Soccer Moms Rule!!

Vic

Soccermom · 11-19-2008, 01:20 PM

Thanks to Steph N !!! ...Vic, a PhD in Genetics isnt a bad choice however a Certified Genetics counselor has a MA in Cancer Genetics and should be totally attuned to her clients concerns...ie if the patient tests positive for BRCA 1 or 2 she/he will be able to explain in detail what that actually "means". They also will check back with you should more information on a particular mutation be found...these are VERY IMPORTANT things... testing is more than a blood draw...there can be some serious repercussions within family dynamics & some daunting choices to be made. PLEASE make sure you see someone whose sole "job" is gen. counseling for cancer.
Vic, the larger Cancer Centers have high risk clinics and should have inhouse CGC's.

HUgs Marcia

Barbara2 · 11-21-2008, 10:35 PM

Here is an another explanation made by one of our members back in 2006:

If you have pTEN present or if you are pTEN positive that is a good thing as Herceptin activates pTEN so it can stop proliferation of the her2 postive cancer cell.

But this information is perhaps dated by now. Be sure to notice Lani's recent post: for those wondering how to predict whether herceptin will work for them. This report (Med Oncol. 2008 Nov 18) indicates that PTEN and phosphorylated Akt are not correlated with clinical outcome in breast cancer patients treated with trastuzumab. So, what we used to believe about PTEN may not be the case, anymore.

Back to your question about the testing lab in case you're still interested. It's been a while, but I believe this is where I had the testing done:
TMD- Targeted Molecular Diagnostics. Here is more information from several years ago: http://www.tmdlab.com/

I gave this information to my onc, as I don't believe he had yet tested anyone else for PTEN.

Before pursuing the PTEN test, you may want to do more research on current thoughts about the test. Good luck!