Zometa

[marianne88]

Hi. Has anyone had zometa infusions and if you did. How did it go? Side effects benefits

[Lisa-n-AZ]

Hello, I started getting Zometa infusions in March 2017 and have continued every 3rd month. I get a little tired and stiff, but for the most part it passes in about 3 days.

[marianne88 in reply to Lisa-n-AZ]

Has it helped with pain

[Lisa-n-AZ in reply to marianne88]

I would say yes, I now have minimal back pain. I have two tumors in my spine. One year prior to being diagnosed with MBC, I was having pain in two locations in my Spine (C5, T7). The pain at T7 started first and I was afraid is was related to my Thoracic Aneurism (TA). My Cardio, Ortho, and family doc all missed the real issue and thought is was referred pain from my shoulder bursitis. It all came together after my PET and new MRIs. The tumor in T7 is 1cm, C5 is 1/2cm. They told me that because of the location of my aneurism they could not use radiation and the goal is to have the Ibrance and Zometa do is magic. I'm 52 but the last 2 years have been a world wind of diagnoses first the heart then the MBC. But, I am luck to say my aortic valve is no longer leaking and my TA is under control and my MBC is NED.

I am no longer having the shooting back and neck pains...hope this sticks. All things considering, I can handle a little fatigue and body pains. We are so lucky to have great doctors. I really love my Mayo docs.

[lweaver in reply to Lisa-n-AZ]

Im glad your pain is better. If you are NED, do you still have tumors?

Thanks,

LeAnn

[Lisa-n-AZ in reply to lweaver]

Yes, I still have Tumors, but they do not light up on a PET scan. Meaning they are no long cancer based. They do not show signs of shrinking. At this time they do not contain cancer. It is my understanding they will always be in my spine the goal is to keep the bone surrounding the tumor strong and encapsulated. I think this is Zometa job

[lweaver in reply to Lisa-n-AZ]

That is very interesting. I am womdering what is going to happen in my case- bone mets to hip and spine. Zometa helps with pain but then does not last more than a day or so. Seems to have temporary effects. My pain is much better than 7 months ago and Im wondering how much will go away.

Thanks

LeAnn

[Barbarasue in reply to Lisa-n-AZ]

Hello , get zometa every month and I feel good after the treatment. I don’t feel any different. Barbara

[SusieIM in reply to Lisa-n-AZ]

I had first Zemeta infusion last week. It went good, had no apparent side effects.

[BeckyHobson]

Hi there,

Yes, I have been doing Zometa infusions every 3 months for the past year. Initially it was a monthly thing. I only got “sick” the very first time and that was just achy flu like stuff for a couple days. Now I get no side effects and it has definately helped with bone growth where the radiated tumors where 👍.

[Dartyus]

I also take Zometa no side effects. First time had sleep problem but since non. I have an infusion every 3 months

[Partia]

First time I had a low fever but pretty easy afterwards. IF they let it drip over a longer period of time you usually won't get any bad side affects. Took it for a year now it's every 3 months.

[PJBinMI]

Hi, Glad you asked this! When I was diagnosed, in 2004, Zometa was the "new" bone med! It was just a few months before the ONJ (osteonecrosis of the jaw) side effect became widely known, and I was getting it every month. I had an allergic reaction, with hives, while still at the cancer center. Didn't have trouble breathing, but they gave me benedryl. Over the years I was on it, I learned several "tricks" to minimize side effects. I was given pre meds of IV benedryl and hydrocortisone. Half the usual dose of Zometa. Extra fluid. Longer infusion time--2 hours rather than 20 minutes. You can take a benedryl capsule yourself if you want to. And do drink extra fluids the day before, day of and day after.

It was the San Antonio BC Symposium in Dec. 2004, when info about the incidence of ONJ became well known, and most oncs started giving Zometa less often, sometimes every month for 3-6 months and then every 2 or 3 months for a few times and then sometimes even less often.

When I first heard about ONJ, my dentist was not aware of it as a possible side effect of Zometa, and other bisphosphonates. Within a couple of years, he had learned quite a bit about it at continuing education programs. I had gotten to know a woman who did have ONJ and found a dental specialist at a dental school affiliated with U of MI Comprehensive Cancer Center. She had been having recurring infections in her jaw until he suggested she use only Arm and Hammer Peroxicare toothpaste and original formula Listerine. So I have superstitiously been using those products in the hopes they will help ward off ONJ.

I also had the most reaction to Zometa the first two to three infusions--needed naps afterward. I didn't realize it at the time, but I did get achey bones from it. I never have had pain from the bone mets themselves, but they have been mostly stable during the last 13 years and I credit Zometa, and then Xgeva for really contributing to that.

Before these bone meds, bone mets would eventually cause multiple bone fractures and patients would lose mobility, become bedridden and would develop pneumonia and die from that, so the bone meds have really been miracle drugs for us, and worth the risk of side effects (the latter IMHO).

I've now been off bone drugs for 3 or 4 years as when I had to have not cancer related back surgery, the surgeon found my bones to be like bones with osteoporosis, soft on the inside, brittle on the outside, and the surgery took over twice as long as planned as she worked around that! My onc and I occasionally talk about having me back on Xgeva and I think when I see her again I will ask if I should have another bone density test. I've been comfortable being off it but will be okay with going back on it again. We probably won't do every month.

So-this is my long long long response to your simple questions! Sorry, I can't help myself......

I hope you will be here in 13 years passing along what you have learned to many fewer newbies than we have now.

[BeckyHobson in reply to PJBinMI]

Thank you so much for sharing this info 💕. 17 months since recurrence and going strong. It’s warriors like you that make me know I will be here in 13 years sharing my stories too

[My3girls]

I had zometa infusions once a month for two years and I would have minor bone aches and feel yucky for a few days afterwards.

[morty87]

I've found taking a Claritin prior to Zometa has helped with the itching and nausea I received from the infusion. I have some achiness and diarrhea for a day afterwards. I am also on Ibrance and Femara.

[Pjriggs]

I do Zometa once a month during my off week of Ibrance. I do get a little sick to my stomach, but nothing really bad. I once or twice went to bed for a few days when I first started it but was told that wasn't one of the side effects. It takes about 45 minutes to an hour to take it and for the most part I have not had a lot of side effects. I have been getting every month since July and other than the first month or two I can't tell I have taken it. Good luck.