kat in the Delta

[kat in the delta]

Anyone taking Zometa because of low bone density and/or to prevent bone metastat. ??? kat in the delta

[tricia keegan]

Kat my friend and I are taking part in a clinical study to see if this can help with prevention of mets for early stage bc.

She gets the Zometa once a month and says it gives her flu like symptoms but I was chosen for the other group who just take Calcichew!
Tricia

[kat in the delta]

I too got the flu-like symtoms with fever of 101 at first...I still get the aches and pains without the fever....Do you know the name of the trial ?? Let me know if or when you find out. Thanks, kat in the delta

[Barbara2]

I still have my port which was left-over from Herceptin. My onc told me to hang on to the port.

So I've been thinking of getting the Zometa insted of taking the oral meds that I'm taking now. He said I could have it if I wanted it. He also mentioned that he has given it to many many people without many side effects. Whenever I ask him about side effects, he doesn't seem to be too aware of them. Maybe people don't complain enough!

I'm seriously considering the Zometa, as it may prevent bone mets. I sure hate to start something that makes you feel sick, though. The oral meds for bone loss cause some muscle aches and bone pain, but it is something that I can tollerate.

[Barbara H.]

I had a bad reaction the first time I had Zometa. The next morning I went to school but had to leave by 9:30. I had fever and my whole body ached. I was in bed for three days. After that I would ache, but Advil allowed me to function. I started Zometa last year at the end of March. I just had it again last Thursday and I didn't even need Advil. I think your body gets used to it after a while, and there are people that don't have the reaction I had.
Good luck,
Barbara H.

[tricia keegan]

Hi this is the name of the trial but we live in Ireland and my Onc is doing this research so probably no help to you!
Tricia

[sassy]

Kat,


I started Zometa in December after bone scan showed osteopenia. My onc wanted to put me on it sooner because he feels it will help stave off bone loss and may also be preventative of bone mets. My insurance would not pay until osteopenia was proven. At this point my onc feels I will only need it once a year.

I will say, the Zometa hit me as hard or harder than anything else (chemo included) that I have taken. Flu like symptoms and in bed for two days. Maybe it was harder because I wasn't taking premeds etc. like with chemo. Don't really know if I have other side effects. Taking Lupron and Arimidex also, so don't know which (if not all) cause the joint pain/stiffness etc.

Having said that, I will gladly continue to take all if they give me an edge on recurrence and the chance for better future health.
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[kat in the delta]

I think the more you take it, the less side effects you have. I still get achey bones,,,but not as bad as the very first time with fever....kat in the delta
ps I was told NOT to do Dental work near the time of getting Zometa.

[Barbara2]

Sassy, I'm wondering if your onc decided to give you the Zometa only once a year. (?) Normally the Zometa is given every 3 to 4 weeks, but I do realize that is the proticol for people with mets.

My onc didn't think insurance would cover it; that you need to have mets to be covered. I do have documented osteopenia, so maybe it would be covered. He also said it would cost about $1000 an injection if not covered by insurance. I was surprised it would be that much.

Is anyone aware of trials in the U.S. using Zometa for the possible prevention of bone mets?

[sassy]

Barbara,


Ask your onc to submit to your insurance company for approval if you have evidence of osteopenia. You can also contact them yourself to request forms to be completed. It wouldn't hurt to ask them for approval. My insurance has been great about everything. Zometa was the only thing they even questioned throughout this whole deal, OK now with osteopenia apparent.
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