[Susan Penley]

Zometa - bad side effects - why continue?

by Susan Penley on Mon Oct 14, 2013 5:10 pm

Hello,

I had my first infusion of Zometa on October 3, and I don't think the side effects are worth continuing the treatment. The next morning I woke up with minor back pain, and I was extremely thirsty and drank 34 ounces of water. I was unable to urinate until I was given fluid (over 2 hours) at the oncologist's office, and then they gave me my scheduled dosage of Kyprolis. Six days later, I had severe pain in the right side of my neck, and I couldn't turn my head to the right. I had to call my oncologist after hours to get a pain med in order to sleep. It is now October 14, and I continue to have minor neck pain on the left side. Also, I have had a fever since I was given the Zometa (my oncologist doesn't believe the Zometa is causing the fever), and I have been administering vancomycin every 12 hours for the past 3 days. I am still waiting on the results of a blood culture to determine what could be causing my fever.

I have never had a fracture, and I am trying to determine if I should continue taking Zometa every 4 weeks to reduce possible fractures by 40%. The pain in my neck was so intense, I don't want to experience that kind of pain again.

Thanks in advance for any replies.

Susan

[eleven]

Re: Zometa - bad side effects - why continue?

by eleven on Tue Oct 15, 2013 1:23 pm

I had a bad reaction to pamidronate (Aredia). 3 day fever and major aches and pains. Felt like a very very bad flu (without the nausea). It was my first injection when I was diagnosed.

I was switched to Zometa and everything was just fine. I have had slight fever and aches twice, but found if I drank a lot of water both before and after, I was just fine. Also length of over 20 minutes seems to work better for me.

So my two tips - First ask if you can be switched to pamidronate instead, and keep hydrated while lengthening the time of transfusion if you stay on Zometa.

Have been taking if for 14 months so far.

[coachhoke]

Re: Zometa - bad side effects - why continue?

by coachhoke on Tue Oct 15, 2013 1:38 pm

I am a retired dentist with multiple myeloma and many lesions in my spine and also never had a fracture. I too question the need for Zometa. My multiple myeloma oncologist says the lytic bone lesions never heal. I have searched for tests (bone density,etc.) to evaluate if it really does strengthen the bones and would love to find the answer.
Coach Hokw

[Riza43]

Re: Zometa - bad side effects - why continue?

by Riza43 on Tue Oct 15, 2013 2:22 pm

I had almost no symptoms with my first Zometa treatment - 10-3-13.

I have had pamidronate (Aredia) treatments since 2011 - 4 or 5 monthly treatments and then 1 every 3 months since the Fall of 2011. If the pamidronate infusion was given too quickly, I would get a dull headache during the treatment and have flu-like symptoms for a day or two. A longer infusion time seem to help me also and being well hydrated.

I have never had the kind of pain you went through with Zometa. For me, I prefer Zometa over pamidronate.

Good Luck!

[Louise]

Re: Zometa - bad side effects - why continue?

by Louise on Tue Oct 15, 2013 2:32 pm

My husband is in remission and will be taking Zometa once every 4 months. He took it in the past with no side effects, and we are hoping for the same again. His myeloma specialist said "myeloma doesn't like it." So, besides its value for bones, it is also a good tool against myeloma.

[Louise]

Re: Zometa - bad side effects - why continue?

by Louise on Tue Oct 15, 2013 2:32 pm

My husband is in remission and will be taking Zometa once every 4 months. He took it in the past with no side effects, and we are hoping for the same again. His myeloma specialist said "myeloma doesn't like it." So, besides its value for bones, it is also a good tool against myeloma.

[Robin]

Re: Zometa - bad side effects - why continue?

by Robin on Tue Oct 15, 2013 2:55 pm

I had Zometa for the first of what has become quarterly treatments in April of this year. (Diagnosed multiple myeloma 12/11). I had an awful response to the first dose. Chills, fever, sweats, all over bone pain. It felt like a very bad flu. The doctor said to take Tylenol and stay really hydrated. It helped a little bit. He also stated that subsequent treatments would have less and less side effects. That is exactly what has happened. I just had my third dose of the year last week and felt blah for about 24 hours.

[goldmine848]

Re: Zometa - bad side effects - why continue?

by goldmine848 on Tue Oct 15, 2013 3:03 pm

By the day after my first Zometa treatment I had pain in the pelvic/hip region so severe that I could barely walk. Although it was not completely clear that Zometa was the cause, I am convinced that it was since there was no other reasonable explanation. The pain lasted for a month and slowly disappeared. My Doc switched me to Aredia and there has been no reoccurance. He says the efficacy of the two drugs is indentical; it's just that Zometa takes 15 minutes to infuse and Aredia takes two hours.

[Norm]

Re: Zometa - bad side effects - why continue?

by Norm on Tue Oct 15, 2013 3:30 pm

When I first took Zometa I had significant head and neck aches for a few days following infusion. My doctor extended the infusion time from 15 minutes to an hour, added 4g of dex to the infusion prior to the Zometa and Tylenol prior to the infusion. That took care of the side effects from the Zometa for me. I think you should look to making some changes to your procedure here versus just giving up on the Zometa which is important for strengthening your bones. Good luck.

[dave h.]

Re: Zometa - bad side effects - why continue?

by dave h. on Tue Oct 15, 2013 3:55 pm

hi Susan - have had zometa for six years, now once a quarter. Two - three days of flu-like symptoms, achy bones and overall yuck! Just water and Tylenol until i feel better. yes, it is uncomfortable, but then for the next three months i feel so much stronger in my frame! Worth it to me to trade three days of "flu" for three months of strength. i am 63 now, diagnosed in jan '07.