zometa questions

[SoCalGal]

I am supposed to start Zometa soon and was told that without decadron in the drip I could have some bad side effects such as HIGH fever and bone pain - more than tylenol can handle.

I cannot tolerate decadron and am considering taking 10mg prednisone which my onc said is better than nothing.

Who is on Zometa and how is it? I'm supposed to be on an every 4 week schedule.

Thanks.
Flori

PS=I've decided that Blue Cross is trying to bury me alive with their paperwork. I've officially been turned down for Avastin and my appeal was denied as well. This is another subject but someone has got to do something about how these insurance companies just try to beat you down and hope you won't resurface. UHGGGG.

[lkc Gumby]

I get Zometa very 6 mos , with absolutely no SEs, which is weid since I usually get every SE in the book!
Seriously though, the infusion is eay for me
Good luck and God Bless!

[Believe51]

Ed has been on a monthly infusion of Zometa for 19 months with little to no side effects. During this time he has had many different drugs in the mix but feels rather good after these infusions. Ed has both lytic and blastic lesions in all bones, now they are repairing themselves well and that is thanks to this drug. I cannot say enough about the good things it does for the bones. He does, (comma) however, have as many premeds as possible. Decadron being one of them. I see good things for you with this drug, especially the benefits. Ed also has had none of the more trying side effects to this med. Hope this helps you>>Believe51

[Believe51]

Forgot to mention to keep an eye on any differences in your jaw or how it feels. And do not panic because this is a rare but serious side effect (ostenonecrosis of the jaw). No worries following Ed's jaw, so far so good. Hopefully you can avoid some of the other side effects. If you do have them, my wishes are that you only experience the flu like symptoms on your first infusion only. If you have these symptoms, give it another couple of trys before giving up on Zometa, most instances they do get better with time. Best of luck, Sweetie. Go get 'em!>>Believe51

[Colleen007]

I have been getting Zometa since December of 2005 when I was first diagnosed. I get my infusion every 6 weeks (at every other Herceptin treatment). I don't get any pre-meds with the Herceptin or Zometa...the only time that decadron is added to the mix is when I end up with a Navelbine treatment on the same day. I did get a slight fever after my first zometa infusion, but haven't had any problems since. Can they give you the steroids for the first treatment and then wean you off of them?

[StephN]

Dear Flori -
Wanted to let you know that I took Zometa for over 3 years,,,,,,, beginning when I was declared NED.
(Adding extra commas for you to use since yours went missing,,,,)

For over 2 years I got it every three weeks along with my Herceptin,,,, then went to 6 weeks then 12 weeks to the end of 2006. I never had ANY kind of premed the whole time. Not sure why your doc is so sure you need something like Decadron. Maybe because of the other drugs?? Maybe try the Prednisone and see how you do and maybe you won't need premed.

I did have some joint achiness during much of that time,,,,,, but don't know whether it was residual from all the chemo I had taken in the previous year. An Aleve at night did wonders,,,,,, but there were times I had to watch how much hard activity I did as I would be sore the next day.

P.S. The discomfort I had was NOTHING compared to the bone pain with the Neupopgen white count booster.

[SoCalGal]

Okay - as usual I feel better reading that it IS possible to do the zometa without the premeds. I'll take one prednisone but that's about all I could tolerate without jumping out of my skin. There just is not enough ativan in the world for me on decadron:). The onc wants me to wait on the zometa until the week following my next herceptin avastin to see if I become itchy again.

Thanks for the commas - I was going to get a new keyboard for this laptop but not anymore. Although I am happy to report that my right shift key is loosening up and may not be shifting soon. Wow - life on the edge. Shiftless/less than-less and comma-less. What next?

[Bill]

Shirt-less?

[SoCalGal]

Okay Bill - had to log back in to say that you're comment really made me laugh out loud...hmmm....possibly brainless but for sure not shirtless. LOL

[sassy]

Flori,

I have to say I never thought of you as shiftless. You seem much too ambitious for that!

And Wild Bill.........

[Becky]

I get Zometa every 6 months (get one May 19). No premeds. The first one I got I had a low grade fever (101) and felt like I was going to get the flu. This only lasted for the day after the infusion. Then I was fine. Even though I get the infusion infrequently, it never happened again. However, my onc changed from getting the infusion in 15 minutes to 30 minutes.

[hutchibk]

Hi Flori - glad you started this convo... I start Zometa in May and now I have a lot of good info to learn from! I have been getting my teeth cleaned, gums checked, teeth x-rayed, 2 fillings filled and my 3 yr old root canal looked at to be sure that I have all my mouth ducks in a row so that I can mitigate my chances of the jaw issues...

[sassy]

I had my first Zometa in Jan of 07. Experienced flu like symptoms for about a day and a half.

I had my second Zometa last Wednesday. My Once expected me to have the same SE's due to the length of time between treatment, however, symptoms were much less, just body aches.

[Bill]

I'm sorry again. When I said "shirtless", I really should have said,"penniless", that's what I thought of, being so poor that the last possession a man could sell is his shirt. I always think before I speak, but my fingers are fast as lightning and, more often than not, I type before I think. It may be a southern thing. "how's your money holding out, man?" "aw, Dude, I'm shirtless right now. I'm so poor I can't pay attention"

[Mary Anne in TX]

Flori, I think some of the insurance companies are working very hard not to pay for what our doctors say we need. Geez, if we're willing to take the darn stuff and go thru the yuckies, why the heck can't they find a way to help out???
I just went thru that with my insurance company. I got 3 more months of herceptin, but will probably have to do battle again or quit. The business office at my clinic called them, the nurses called them and they told them all no, no, no! One of the nurses who is persistent, got my doctor to call the director of the program for me! What a blessing!!!! Then she called me to share the good news. So I have a reprive til June 28. Then we'll see. Oh, yea, I also have a monumental bill for the herceptin they have refused to pay for.....$40 or 50 K I think! Oh, well, I'll deal with that one after I get my taxes in!!!
But Flori, you will figure a way to get that Zometa infused without having to stand on your head or something. People have given such great ideas.
Please keep us up on what is happening along the way! Warrior prayers are awefully powerful, you know!!! Sending a cross country hug, ma

[PinkGirl]

Why are "ned" people getting
zometa?

[Bill]

Pinkie, I'm not sure, but I know Zometa is a "bone-strengthener?" and some anti-hormonal meds may weaken bones? Not sure.

[SoCalGal]

Hi Her2 peeps-
Just re-reading your advice in prep for tomorrow's zometa. I am going to stay sane and not let my overactive mind worry me to death. FYI - Pink Girl - zometa is a drug for osteoporosis not really for cancer. If you have bone mets it helps your bones heal and has a nice side effect of arresting cancer in the bones.

[lkc Gumby]

Zometa is FDA approved fro "oeteopenia" so Ins will reimburse. However my onc feels strongly that since its indicated for Bone mets , its a good Rx for prophylactively as well. I've been on evry 6 mos for 2 yrs with no problems.

[hutchibk]

Hey Pink - in my case, I will be getting Zometa because 1) I have osteoporosis in my lumbar spine, and 2) they are seeing indications that zometa my have protective aspects to it against bone metastasis...

[PinkGirl]

Thank you all for the explanations.
I had thought it was a chemo drug.

[Soccermom]

Dear Flori,
I hope all went well for you with the Zometa infusion. My best friend here just recirred (after 10 years NED) and she had her first Zometa last week. She was fine the first day but awoke the next night with severe "flu like" symptoms. She went to the Oncs and they reasuured her that this was normal. I asked around and was told that she could ask to have the drip slowed down next time...I am telling you just in case..she was angry with me because I didnt warn her that she could feel like doody...but then again I have never had Zometa and everyone reacts differently.
I hope YOU sail thru the first one!
Big Hugs,marcia

[dee1969]

Hi Lori. I had my first Zometa infusion 2 days ago and i cannot believe the pain since, and I normally don't suffer side effects from anything. I ended up taking Norco in the end but thats not doing any good really and is spacing me out. Would Decadron work for bone pain u think?

[SoCalGal]

I know that my oncologist likes to give decadron as a pre-med which will eliminate the pain reaction. I had flu-like symptoms for the first infusion. 6 weeks later at my second infusion I had no fever and it was a much more mild reaction - some random bone pain. For example - my shoulders (rotator cuff area) hurt and my back hurt. My onc told me that the associated pain with zometa can be anywhere in the body and is not related to areas of bone mets.

I only get zometa every 6 weeks (every other cycle of herceptin/avastin) for convenience. She originally wanted me to come every 4 weeks but is fine with this schedule.

Also - I do not take any pre or post meds. Hopefully you will have less of a reaction with each dose. That's what most people have said. And if you can tolerate decadron I would guess you will have no reaction.

Feel better!

~Flori

[dee1969]

Hi Flori, Thanks for reply. I will be armed with Decadron for next infusion. All the best, D