Zometa

GramE

A bit of info from me - I do have osteopenia, for several years (age 63 now).   For at least 10 years i took Evista daily, Actonel once a week, but stopped all when I began Dose Dense chemo June 2008, before surgery.   herceptin ended July 2009 and I asked what do I do for osteopenia.   Instead of pills, like before, we discussed once a year Zometa infusion and I had it a month ago.   I also take 1600 mg calcium with Vitamin D daily.   

Is the twice a year suggested more for PRE menopausal?   Gotta write it down and ask at next onco visit.     BTW, no side effects at all for me.   The waiting for the "drug" was much longer than the infusion - 15 minutes and it was done.   

lexislove

I think most of us are getting the 4mg. Am I right, I haven't heard of 2mg infusions. The trials done to date have been 4mg.

KerryMac

I am getting 4mg, every 6 months for 3 years (unless new info arrives that suggests I stay on it...)

Qatar

Hi Guys,

What is Zometa and why do you use it.

Springtime

Q, Zometa is a bone builder (like Reclast, Bonevia) and there are studies that show it prevents bone mets. 

Anonymous

Unbelievable as this sounds....

I received my first Zometa infusion on Friday and looked at the bag which had Zometa 2mg on it.  I thought that it was the first bag and that they would hand another one.  Nope, they just gave me 2mg and stated that is their protocol.  I go to Vanderbilt Clinic a well known research clinic.

I even called the nurse in to ensure the dosage was correct.  So much for following the study.  Anyone else out there getting 2mg every 6 months instead of 4mg Zometa?

Springtime

I go again in November and will look at the friggin bag!!!! cripes.... ugh.

Gitane

Aug242007,  Unvelievable!  Never would I think I was getting 2 instead of 4 mg.  What "protocol" is Vanderbilt following?  Wow, I will check on this, too. Thanks. G.

KerryMac

I know I got 4mg because mine is administered to me at home, and I had to buy the jolly stuff from the drug store! Mine was in a tiny, 4mg vial.

Springtime

I am getting Zometa for Osteopenia, not for bone met prevention (according to my insurance company) ha. I wonder if it is 2mg for osteopenia??

Anonymous

They stated their protocol was 2 mg for prevention of bone mets every 6 months.  This is the big research hospital in Tennessee.  Wish I lived in California.

weety

First of all, I'm surprised that the protocol is different depending on where you live!  That sucks!   But even more surprising is that it doesn't change based on weight/height of patient like most other important meds seem to.  Aug242007, you mentioned earlier that you were petite at 110 pounds or something close to that.  2 mg to you is a lot more than to an "average" or even larger women.  I'm very petite also, and several times my onc has had to lower the dosages on the meds with amounts that were a fixed "standard"--once with the zofran I got in my premeds before chemo (she ended up cutting it in half or I got terribly dizzy) and also with the decadron that I had to take after each chemo session.  This "one size fits all" approach doesn't always work, especially if you are on either end of the spectrum!  Maybe the protocol is only 2mg where you are, but I guess you could look at it on the bright side-- be glad you are small and getting the 2mg rather than 200lbs and still only getting the 2 mg!!!

 I'm also considering entering this study, but haven't even asked my onc if she would prescribe the zometa off-label yet.  I'm trying to gather up all my research on it first!  For women already in the trial, if you had the opportunity to take the zometa without being in the trial (even though it's only every 6 months vs. monthly) would you have gone that route? 

KerryMac

Hey, i have never thought of that! Yep, every chemo they weigh you and change your dosage to the kg, not so with my Arimidex. interesting.

As for the Zometa Trial vs getting it off label - if you go into the trial, there is no guarantee that you will get Zometa. I think there are three arms. I am happily taking it off-label, and paying for it privately. 

CathysDaughter

Hi , you are lucky your doc told you about the jaw side effects.  My mom started zometa around 2001, when it first became available.    She did develop the ONJ, but we were never told about the side efftects!   Having poor teeth and periodontal problems, we may have decided not to do it.

I am a dental hygienist, and watched my mom suffer more from the ONJ than she ever did with chemo or her breast cancer.  I  mean that truthfully!   Her teeth literally fell out of her mouth one day!  And as dental hygienist, I felt helpless! Something as simple as a dental cleaning CAN cause ONJ!   Please be warned ladies.  I have sat in on lectures from oral surgeons specialized in the care of ONJ, and it is a fact that not only extractions and major dental work can cause the onset of ONJ.  

We had to search for the right oral surgeon to help with the management of the secondary mouth infections, swelling, tooth loss. jaw and throat pain, and bone splintering.   

If you are going to start Zometa, have a thourough cleaning, have all extractions, and RCT done.   And during subsequent cleaning don't let the hygienist "dig too deep"   ask for a more superficial cleaning,

CathysDaughter

Supposedly there were jaw pain complaints in the studies, but "supposedly" the Dr. was not alloud to write it down when pts did complain of the jaw pain.   There may have been a cover up!

She was  a female Dr. doing the studies, and initially she was cooperating with lawsuits against Novartis, but she can no longer be contacted.   Just be aware of the ONJ ladies, and a simple cleaning can onset ONJ.

It happened to my mom!  

cheers247

I will be starting Zometa 4mg IV every 6 months.  I'm not going to be in the study because I want to be sure I get Zometa, there are 3 arms to the study and you just don't know.

Anonymous

  I have been getting zometa once a month since August 2002.....I was getting 4 mg, but in July 2007 the dosage was reduced to 3mg after I asked about osteonecrosis. I get it via an I V and it takes about 15 mins.  Before zometa was approved by my ins., I was getting pamidromate and started on that in July of 1998.  I had severe bone pain in my sternum when I was diagnosed as having Stage IV metastatic breast cancer in 98....the bone pain stopped after about two months of pamidromate.  I have had no adverse reactions to it  Both my onco and the onco I consulted with at MD Anderson  feel I should stay on a bisphosphonate although the onco at MDA noted that there are no guidelines for continuation for someone who has had as many doses as I have had.  If it is supposed to prevent new bone mets it did not for me since I have had new areas show up in my spine as well as my sacrum. 

Cathy'sDaughter,   I am also a dental hygienist and I have seen many patients who are on zometa and none of them have developed any problems due to treatment while on zometa, but we would not risk an extraction while on a bisphosphonate.  I think it is like anything....some people develop osteonecrosis, others do not.

unklezwifeonty

See this thread.....http://community.breastcancer.org/forum/6/topic/729712

Celtic_Spirit

Marybe - Have you noticed any loss in kidney function? I noticed from my bloodwork taken prior to my 2nd infusion last June that mine had dropped a little. I asked my onc about it when I saw her last week. She says it's nothing to worry about - very small difference - still, I don't want to wipe out my kidneys while trying to prevent a recurrence. Thanks for your reassurance, re: osteonecrosis.

unklezwifeonty

Dear Jessica,

Right now there are only 2 arms in the study. Zometa IV and Clodronate Oral. You have a 50-50 chance of getting Zometa. Neither drug has been proven to be better than the other in preventing mets. You could always ask your doctor to sign you up and if you don't get Zometa, then drop off the study and get it privately :-)

weety

I thought the same thing--that  zometa was expected to be superior. 

unklezwifeonty

Dear Weety,

There is no such evidence at this time. If Zometa was known to be superior there would not be a clinical trial....

KerryMac

My Onc told me they were "the same" and if insurance didn't cover Zometa, i would be just as good taking Clodronate. she said the clodronate had more SE's, and also it was a pain to take as you had to take it every day, and stay upright and not eat for an hour or something.

Celtic - I get mine administered directly from Norvatis, and they are more concerned with kidney function that anything else. They require blood work prior to each infusion.  My nuurse stresseddrinking lots of water, etc. The only thing she said about the jaw was no extractions.

Anonymous

Celticspirit.....No, no change in kidney function.  I get that blood panel run once a month when I go for the zometa and everything is always within normal range.  When I was doing the chemo twice my cell count was down....forget it if was white or red....and had to have some sort of a shot to build it back up, but nothing other than that has ever been off.  I actually figure from things I have read that I have enough zometa in me to last the rest of my life, but I will keep on getting it since it doesn't seem to cause me any problems and my onco thinks I need it. 

Springtime

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! 

Anonymous

 Whenever I go for treatment they do the same routine, weigh me (Groan) get my BP and pulse and take my temp.  Then after I go back to the treatment room when they access my port, they always take blood and go run it through some machine and then bring me back this sheet that shows my potassium levels, white count, things like that.  I think the creatin level is what indicates if something is off with the kidneys, but can't say for certain.  They also check my clotting factor since I am on coumadin.

Springtime

Ok thank you. I always get my blood drawn too, I'll ask to make sure they're checking my kidneys. 

Anonymous

  Yes, ask them.  I find they never offer much info, just hand me the sheet and say you are fine.  Which I guess is what we want to here, but I also like to know what is going on. 

Celtic_Spirit

Prior to my zometa infusions, they test my serum creatinine (creatinine and glomerular filtration rate) and calcium (in blood) levels. Prior to my 1st infusion, my GFR was above 89. Before the 2nd infusion, it was 81. That concerned me. However, I looked over my test results for the past 3 years (way prior to zometa and cancer) and noticed that my GFR historically has fluctuated. Guess that's why my onc wasn't concerned.

lrsreyes

I tried to look for the post from a lady ( chemical engineer) with bone mets for 2 years & her treatment was monthly Zometa & arimidex . Her scans when she was dx showed her entire spine, ribs covered with black but after 6 months her scan showed gray (NED). This proves that what we are getting are powerful stuff indeed !!!!