I don't want Xgeva or Zometa

I waited six years before agreeing to the Xgeva injection. I finally agreed since my spine is now affected and loosing my mobility is more scary to me than the side effects of Xgeva. I am still very cautious about how often I will allow them to give it to me.

*susan*

I will have my 4th injection of Xgeva on Wed. I have had no side effects. Xgeva helps with bone strength and blocks the action of the cancer in the bone. Personally, for me, the benefits outweigh the risks. I don't want to worry about possible fractures or paralysis, when I'm concentrating on being as well as I can. I have multiple bone mets and osteopenia. Now this is just my opinion, of course.....

I have been on xgeva monthly for 4 years with no problems. Sometimes I get very tired for a day after and sometimes no se at all. I do worry about onj. with only one met I might be more reluctant but I have done well with it so I'm 👌 with it.

Xgeva is my friend, too. Really helped with my bone healing, and luckily, no side effects.

I had just been talking to my Onc about discontinuing Zometa, or moving to Xgeva. I still get some side effects after a Zometa infusion, even though I've been on it for four years now.

He pointed out to me studies that have shown how damned effective these drugs are at preserving quality of life for bone metsters, and keeping the bones strong. He mentioned that I should stay on Zometa, as the injectable form, Xgeva, stays in your system longer, so if I'm having side effects, I would be having them longer.

He did drop me down to four times yearly. The data doesn't lie. Zometa/Xgeva increase our disease free intervals for bone lesions, promote quality of live, and maintain bone strength and mobility.

I very much like physical freedom and mobility. Being pain-free ain't so bad either.

If I were you making the decision, I'd consider how much osteopenia I had, and where. Location makes a difference for mobility. Same with your met. Where is it? If it gets bigger, what will it do? For example, having a small met on a femur is different from having one close to the spinal cord on a vertebrae. Remember, your first infusion/injection is the worst. You will get flu like achiness and fatigue. Taking Zyrtec helps, but I don't know of anyone who has skipped first round side effects. But, after that, this stuff works.

Talk it out at length with your doc. Maybe they can radiate that small met, and wait.

You are young, and have had your ovaries removed. The osteopenia might be a larger concern than one small met. Remember, if we fall, we break. If we break, we take longer to heal.

Indenial, this is up to you. If you don't want Zometa or Xgeva, you don't have to have them. Or you can take one for a bit then stop if it bothers you (too much).

The "protocol" at my cancer center is once monthly Zometa for two years. Then every three months. There are some data which show that you only need it monthly for one year. Women who take it do take longer to progress than women who don't. I'd have to hunt down the reference -- it's old. Ask your onc for the primary data.

I agree that the first infusion of Zometa is the worst. I felt like I had the flu for a couple of days. After that, nothing. I switched recently to Xgeva because I got tired of having the IV placed. Shots are much easier.

Since you have osteopenia you're in more danger than some women. In theory the cancer cells will find it easier to break into the bone. At the very least you need to take a lot of calcium and vitamin D. One option might be to do that and see how your bones do. If you can reverse the osteopenia that way maybe your onc will backtrack on the Zometa. BUT. Even if you didn't have cancer, if your osteopenia got much worse they'd be prescribing a bisphosphanate.

Let me reiterate. You do not need to take any medication you do not want to take. I just ask that you understand the risks involved in your decision.

I should mention I have my Xgeva every other month. My MO says that they use it every other month for a year then switch to every 3 months to reduce the chance of osteonecrosis. The half life is 30 days.

I'm a Zometa girl, myself. I've taken it for 6 years (7 in January). I don't have many side effects anymore. In the beginning, I had cold-like symptoms, but over time, it's dulled.

Indenial, I'm another one who really dragged my heels on starting Xgeva, which had been recommended for me for more than a year while I underwent some dental stuff -- a couple of extractions, and then trying to save a slightly loose tooth. My UCLA onc finally sent me to an Xgeva expert @ UCLA. She did a pretty extensive workup including a jaw CT, extracted the questionable tooth, and eventually cleared me for Xgeva, which greatly eased my mind re. the risk of ONJ. So I've been on it for 5 mos. now (about to get #6), and I absolutely love it. No issues, except greatly reduced bone pain and I can stand up much straighter than I'd been able to for many months. My UCLA onc recently recommended doing only 6 monthly injections before going to every 3 mos. (because of a possible increased risk of ONJ for those of us on Ibrance, which tends to lower counts), and I was actually disappointed! Clearly, I'm a huge fan now. I consider it one of my miracle drugs, along with Ibrance. My only advice is to get any teeth issues well checked out prior to starting it.