Zometa

Anonymous

    She was obviously ER +.  When I was diagnosed Stage lV with mets to sternum and lung, I was treated with pamidromate (pre-zometa they used this) and tamoxifen.  My tumors shrunk 50%, but it was the tamoxifen that did it, not the pamidromate.  I think zometa, aredia, pamidromate are used for bone pain and also to control the bone mets so they don't spread, but don't quote me on it.  I was only able to be treated with the tamox because I had never had it before as preventative. 

weety

All the studies I see on zometa talk about it "with endocrine therapy."  Does that mean it is not thought to be beneficial for hormone-negative breast cancer?

unklezwifeonty

http://community.breastcancer.org/forum/6/topic/729712

Springtime

Hi All,

There was some back and forth previously here about the dosage, and I checked today. I get 4mg, every 6 months, for osteopenia, but really, to prevent bone mets.

Some others were talking about 2mg drips. Just FYI.... 

unklezwifeonty

Dear Springtime,

Thanks for sharing your info. The SWOG 0307 clinical trial has Zometa given 4mg every month for 6 months and then every 3 months for 30 months.

In 3 years   someone getting Zometa without SWOG 0307 would get 6 doses.

In contrast, someone getting Zometa     with SWOG 0307 would get 16 doses.

How long can you keep getting Zometa without the trial?

Springtime

I think for osteopenia, I can only get it every six months for 2 years, so 4 times total. Not sure, but that's what I've heard. 

Are you in the "trial"? Can you send me info on this?  

unklezwifeonty

I am trying to enroll into this trial. Meeting my onco next week to try one last time to push her to sign me up :-)

Thanks for the info that for osteopenia you get for 4 doses. I guess that makes the case to join the trial even stronger. Look for SWOG 0307 on clinicaltrials.org and you will find the trial. They mention 3 arms - Zometa by IV, Clodronate by Oral and Ibandronate by Oral. But the Ibandronate arm is no longer recruiting.

weety

unclezwifeonty,

My onc said the guidelines were 4 mg 2-3 times a year, but she didn't tell me for how many years.  I will ask her when I see her next.  I wonder if it differs from onc to onc or if there is a "standard." I also didn't realize in the study that it changes from the every month to the every 3 months duration.  I thought it was every month for the whole 3 years!  Hmmmm... back to the drawing board for me!  I hate making decisions!  Especially when it's just your life involved!

Pure

it's every month for stage 4 patients.

unklezwifeonty

Dear JMV,

Thanks for sharing. How are YOU doing? How is the baby? 

Gitane

Hi Springtime,  I know they check my kidneys.  They look at the BUN and Creatine levels in addition to all the other stuff I think.  They make me come in the week before my Zometa infusion so they have time to check it out before the infusion.

unklezwifeonty

Dear Weety,

For women with early BC and at risk for osteo diseases, 4 doses is pretty much the standard. The drugs are not expensive so you could also get them and pay for them yourself if you wish. The side effects are also minimal. If you have good dental health, the risk of ONJ is < 0.5%.

LindaLou53

Nov 2, 2009 11:36 am Springtime wrote:

What is the test you get to check your Kidney function? And are there other tests to get while taking Zometa? I am not aware I am getting anything!

___________________________________________________________________________

Springtime :  They usually check the Glomerular Filtration Rate (GFR) to determine the status of your kidney function.  I had a GFR test run the same time they ran my other bloodwork each time I had a Zometa infusion.  At my chemo center they are able to print the CBC results right away and give me a copy before I leave.  The other blookwork including the Chem Profile, GFR and tumor markers are run at an outside lab and the results are sent to me later.  You should always request a copy of ALL your lab results if you want to keep track yourself of every test they run.

Info on the GFR test: http://www.kidney.org/kidneydisease/ckd/knowGFR.cfm

cheers247

I had my first Zometa infusion yesterday.  I'm pretty achy today, they said it should only last a day or two.  Jessica

Springtime

Yes one day or two Cheers, that was me. The evening of was the worst, and a bit into the next day.

unklezwifeonty

I signed up and got assigned to the Zometa arm today.

Beverly11

I had my 6th infusion on Tuesday.  I am on the bisphosphonate trial.  4 mg every month for 6 months and then 4 mg every 3 months for 2.5 years.  So, I don't have to go back until Feb/09.  I had the achy fluey side effects from the 1st one.  (but nothing like chemo;especially taxotere)  I might get a few more aches from the others but nothing worth mentioning.  Sometimes, it is hard to know why something is aching.  Could be chemo lingering, tamoxifen, menopause, surgery...

weety

unclezwifeonty,

Congrats on getting signed up for the trial!  When do you start?

unklezwifeonty

Dear Weety,



I will start as soon as zometa arrives. If it arrives in time I will get it this Monday with my first Taxol otherwise with the second Taxol.



Thanks for sharing your info.

Moissy

Have any of you guys ever heard of possible joint problems if you are on Zometa and need a knee or hip replacement? My new onc. thinks I'm a good candidate to go on Zometa. I already know about the jaw risk, but when I talked with my dentist, he raised a concern that once you have the IV, it's in your bones forever and could be a problem if you need a knee replacement in the future. He wanted me to consider all the possibilities before deciding.

Of course he's a dentist, not an onc. but his wife had BC and he's pretty informed. Didn't say don't do it...he just wanted to raise it. Of course I'll be happy to reach the age of needing a knee replacement, but I do have a family history of needing that....so something I should consider. I've read nothing about this concern except for the jaw necrosis....Any of you guys ever hear it raised?  I'm eager to get started.

Gitane

I've never heard of that as an issue.  I'll be interested to hear what people say.

KerryMac

I've not heard of it either, but frankly my risk of BC is my most immediate concern.

Pure

lol-I am with you Kerry. I love when they talk the side effects. As far as I am concerned mets trumps all side effects.

Anonymous

   Moissy,  I was already on zometa by the time I had my knee replacement. ( went bad due to an auto accident many years before)  I have not had any problems with my new knee and it got rid of a lot of my aches and back problems since I was walking off balance to compensate for the weak knee. 

Moissy

Thanks, Marybe. Glad to hear you had no probs. My PCP is suggesting that I schedule an appt. with a researcher who specializes in osteoporosis to see if she's ever heard of it. But I can't get an appt. with her until MARCH, and I don't want to wait that long to get started. Hoping to join you guys for a Zometa happy hour soon. Thanks.

Moissy

Anonymous

Getting my first dose this afternoon.  Been drinking lots and taking Ibuprofen (as I have a cold anyway).  nervously excited.  nurse said she could not administer slowly as the prescription said over 15minutes. I hope I dont get sick as tonight is parent teacher interview night.

Getting this drug has taught me to be my own best advocate.  Although my onc was all for this, I had so much trouble getting her nurse to do the admin work to get this going.  If it wasn't for KerryMac sending me the Access Zometa phone number so I could get the referral started, there is no way this would have happened.  I think I pissed off the nurse further by going around her to AccessZometa but, heck, she took 8 weeks to move on my file!

 What is the general feeling about the 4mg every 6 months versus more frequently like on the trial?

Also, do any of you understand why this can not be given in hospital- at least in Canada?  I understand that it is "off-label" which just means that the drug company can not make claims that this would work for prevention as it has not been proven yet.  But, unless the hospital pharmacy checked with the doc about the diagnosis (ie no osteoporosis or mets) who would know that I was getting it for prevention and not osteo?  Pharmacies don't usually check your diagnosis before issuing the drug.  Or is it because the drug is so expensive, they would check?

lexislove

Im glad I saw this thread on the Active Topics......I need to get my Zometa perscription filled this month!..lol.

thisisme, Im glad you went around your nurses back and became your own advocate. 8 weeks? Too long.

unklezwifeonty

Dear ThisIsMe,



The benefit of Zometa at higher dose than osteo but for only 2 years has been seen in previous trials to be significant but temporary. So this trial is for 3 years. The cost of zometa is not very high so if you are keen on getting it and your plan refuses to pay, you can pay for it out of pocket. But do get the dose at the level that the trial is giving and get all the kidney, liver, dentals checkups that are recommended in the trial.



Love,

Anonymous

Just to keep everyone confused.  I had my Zometa 2 months ago and was only given 2mg instead of 4mg.  I questioned the dosage but they said it was their protocol.  I just don't understand why everyone who is ER positive is not getting Zometa.  I see that the San Antonio Breast Cancer Symposium has some information to be presented on Zometa.  Why isn't everyone getting it?  The study proves that it helps to decrease mets.

unklezwifeonty

Dear Aug,



If you are in SWOG 0307, the trial protocol calls for lower dose if you have kidney or liver function concerns.