Zometa Infusions — your experience?

Posted by monimoa @monimoa, Jul 6 1:51pm

I am now a little over one year from the end of chemo, radiation and surgery, and one year into taking an AI. I’m in my early 50s and chemo put me into osteopenia. In response to the bone loss, my oncologist recommended Zometa. After being initially put off by the list of risks, I eventually agreed to my first infusion. It was administered 1.5 weeks ago.

I’m noticing that the side effects of the infusion are different from what a few reputable medical websites report and from what my oncologist said I should expect. I’m wondering if my case is unusual or if my experience is pretty common.

For instance, I was told that the infusion would cause flu-like symptoms for 3 days. It did. No surprise. What I was not expecting is the pain that started on Day 5. The type and location of the bone pain changes every 2-3 days, and I can’t shake the low-grade fever. I’ve had two instances so far with my blood pressure getting too low and I’ve almost fainted (I’m not on any BP meds and my numbers are always “normal”).

Those of you have had Zometa treatments every 6 months—what’s been your experience?
How long might it be until I feel better again?
Is this what all Zometa infusions will feel like in the future?
Any Zometa life-hacks you’d recommend?

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leolion811 | @leolion811 | Jul 11 7:12am

I do Reclast maybe this is better…

exk | @exk | Jul 12 7:49am

I started Zometa approx 2 months after radiation. The first infusion gave me a few minor side effects and lasted only a couple of days. My second infusion was six months later. Within a week I started with mid-thigh pain. Because I’ve had chiropractic issues over the years, I assumed it was a pain that an adjustment could address. The pain got worse and about four months in, I stopped walking for pleasure/exercise and walked with a noticeable limp. Never occurred to me it could have been zometa but when I looked up the side effects, there it was. My leg started healing 6-7 months after the infusion and no lasting effects. Also on anastrozole which has its own pain effects but nothing I can’t live with —although I’m only two years in. Good luck.

sally484 | @sally484 | Jul 13 9:58am

I have received 3 or 4 Zometa infusions throughout my AI journey. I thought I was doing ok until I noticed my teeth were all going crooked! I didn't realize that Zometa can cause jaw problems (although your jaw being a bone, you would think I would.) Anyway, my teeth have always been straight and now the bottom ones are completely crooked in front and my molars have moved in the back. I'm a little funny about my smile so I guess I'll be looking into Invisalign...................and no more infusions!!!!

Sue Ellen Murrey | @semurrey | Jul 13 11:59am

Similar history but I started first with Fosamax - 58 yrs and treatment put me into osteoporosis. I've been hesitant to try Reclast but will keep you posted as i will get 6 month labs to see if Fosamax being absorbed.