Zometa

everetta

My oncologist has recommended zometa infusion every 6 months to help reduce metastasis for my stage 1a lobular breast cancer (oncotype 29). The first time I had it I got sick 6 days after the infusion--terribly sore fingers and legs..difficulty holding things and walking. It went away gradually after about 3-4 days. I am due to have it again, but am scared I will have a horrible reaction. If the reaction was the same as last time I could tolerate it since I know it went away. I am worried about permanent damage. Does anyone have advice or experience with this.

pesky904

I'm sorry to hear about your side effects. I'm interested to hear others' replies because I am due to start Zometa soon.

Anonymous

Are you high risk for metastasis? Are you osteopenic or does osteoporosis run in your family? I wonder, because of your low staging, why your doc is so worried about metastasis. It seems pretty dramatic to administer a drug every six months that is making you sick if you aren't at high risk for recurrence already (+ nodes, etc. etc.).

Claire in AZ

everetta

HI Claire, I think my doctor would have supported not doing Zometa but I was the one that was more anxious and wanted to do everything I could. Although clinically I am low risk, my oncotype was 31 (redone and came back 27) so elevated and making it higher risk. Some doctors recommended chemo which I did not do. The zometa was uncomfortable but short lived--I was scared the negative effects wouldn't go away but they did gradually over two weeks. It does offer reduction of risk of mets so I will try it one more time--I am only worried about long term damage and wondered if anyone experienced that. I do not have osteoporosis myself or in my family..the motivation to do it is the higher oncotype, in general people don't have a bad reaction so little negative risk, and some data that it decreases mets in postmenopausal women.

Simbobby

Hi Everett’s,

I have had two Zometa infusions so far - six months apart.

My Oncologist warned me that I would have flu like symptoms the first time.

And I did. Chills, fever, aches that lasted about three days.

He said the second one would not have this effect. And it didn’t,

I had no side effects from the second infusion

everetta

That is a hopeful thought. I had heard the many people only have the negative reaction the first time. I am curious is that is common. My first reaction was atypical.low fever the second day..fine the 3rd and 4th..awful bone pain days 5-7..improvement and back to normal a few days later. I hope I will have little or no reaction the second time. Thanks for letting me know...this is encouraging.

AnnC2019

I had one infusion so far. Felt sick about a day or two. Next one is in July

OTMom

My MO says the first is the worst and it gets better from there. I felt pretty awful after my first one. After the second I was definitely tired, but didn't feel like I did the first time.

Hopeful82014

I've had basically no problems with Zometa but realize that others certainly have. My MO advised hydrating extremely well the days prior, day of, and following day as well Tylenol or an NSAID a couple hours before the infusion. That's pretty much what I do - I put a note on my calendar to make sure I don't forget to step up my water consumption and that I don't forget the Advil.

For our purposes (warding off metastasis as well as protecting our bones during ET) 3 years (6 treatments total) is pretty standard so for most of us, the treatment is of finite duration.

everetta

Thanks. I hope it is true that the reaction the second time is less. I have heard that as well.

everetta

Thanks for the suggestion on hydrating and medicating before and after. Are there certain anti inflammatory that you are supposed to take or avoid. I thought I read that there were some types you shouldn't use. Sounds like Advil and tylenol are ok. Aleve has helped me with bone pain for other things--do you know if that is ok to take?

Hopeful82014

Everetta, I’m not really supposed to use. NSAIDs at all but confess to cheating at times because Tylenol doesn’t cut it for me. At various times I’ve used both Advil and Aleve and noticed absolutely no difference in regard to how I feel after Zometa. If your preference is for Aleve, I would think it would be fine to start with that and see how you do. Since you had that strong reaction the first time you might want to go on taking it for a few days afterwards. I sure hope it helps!

peaches1

Hi- I don't come here very often anymore since I am not receiving chemo or radiation, but I do Zometa every six months. I think I have two infusions to go. The first time I had one, I got a mild case of the flu. After four days I called up the nurse navigator, and she told me that this happens to everybody the first time, but it almost never happens after that. I have not have any problems with Zometa since then other than the fact that I had to have a root canal, and so had to postpone one of the infusions for three months. They want you to see your dentist a few weeks before you have the infusion to make sure your teeth are okay.

everetta

Thanks for the reply and for everyone's replies. I had the zometa 6 days ago and haven't had any reaction to it. Where the first time I had fever and enormous pain in my hands and legs (could barely walk or hold a cup) this time I haven't felt bad at all. I had also heard that the second fusion people rarely had bad reactions (although some still did)..so maybe it is because of it being the second time, but I also followed the advice others gave and starting hydrating two days before and taking advil 2pills every 6 hours also day before and continued for 3 days.Also the doctor slowed down the infusion and it took 2 hours. Either way I am so glad I did it a second time (since it does give benefit) and that I had absolutely no reaction--just felt myself. The first time I didn't expect to feel anything so went on a hike a few days after and got dehydrated, exercised to hard and this time I took it real easy and rested and hydrated.

Brilee76

Hi ladies I just had my first Zometa infusion today. I'm following this thread and will let you guys know how things go for me. I have a cold so I'm already stuffy, tired and coughing. Here's hoping I avoid anything too yucky!

7of9

I used to get 5 vicodin with ea infusion ( I've done Zometa 6x... this will be my 7th pending a bone dense test and kidney ck) A little worried about my teeth. Damn over regulations my nurse practitioner told me they aren't allowed to give vicodin unless your terminal. BS. I still get achy but exercise and tylenol I get thru work. I would go thru 2-3 of the vicodin isually then sit on the others for a really bad achy day ( radiation, 4 surgeries and Arimidex) when stress, cold lack of moving and or bad sleep threatens to ruin my day. 1/2 pill would get me moving, loosen up and not scared everything was mets. I cant take muscle relaxers, they mess with my colitis. Just stay warm, exercise and take your tylenol.

LillianGish

Hi,

I had my first Zometa infusion about a month ago. I feel really lucky in that it didn’t make me sick. In fact, I felt no different. I took no meds before or after the infusion. Have no magic cure. Just lucky.

I don’t in any way doubt the experience of others, but just want to let readers know it isn’t for certain that Zometa will make you feel awful.

My next infusion is in May. My MO says these infusions are almost as effective as chemo in reducing the risk of bone metastasis. Totally worth it to me, even if it had made me ill for a few days.

Brilee76

Looks like I got nausea, diarrhea, fever, bone muscle and joint pain. I'm pretty happy these side effects are only for the first treatment.

windingshores

My oncologist suggested a half dose for me. Still considering it but I have severe osteoporosis and am still on my Femara, which may end soon. Oncologist said I could take two years off Femara, do Reclast (lower dose) and then do two more years of Femara.

I can't imagine taking a biphosphanate if I didn't have osteoporosis but understand that since you didn't do chemo, you wanted more protection.