[wesley]

Re: Zometa - bad side effects - why continue?

by wesley on Tue Oct 15, 2013 4:06 pm

I've had two doses of Zometa this fall. No side effects. (And basically none from rev/Dex either). So far so good. ASCT in late January at Mayo.

Wesley

[Tomlsr]

Re: Zometa - bad side effects - why continue?

by Tomlsr on Tue Oct 15, 2013 4:10 pm

The day after I received my first dose of Zometa I was hit with severe flu-like symptoms, including uncontrollable shivering and a fever of 104. This passed after about 36 hours and I reluctantly agreed to try it one more time, 6 weeks later. The second and subsequent doses produced no side effects whatsoever - or so I thought. About 6 months after my first dose I needed to have an emergency tooth extraction due to an infection beneath the tooth. Months later, the wound still hadn't healed, because, I was told,of the Zometa in my system. Apparently I'm a relatively rare case. Now, one year later, I'm still suffering from osteonecrosis. The wound is finally healing after months of antibiotics, but I'm facing another possible extraction of the adjoining tooth because the osteonecrosis caused that tooth to be loose. The doctors say they are worried another infection may settle in the space left around that tooth because of the bone deterioration. I worry that the Zometa, although I have not had dose in 6 months, may still be in my system and may cause a repeat of the problem. I plan on adopting a wait and see policy and try to save the tooth. In the meantime, I'm on a break from all chemo and I will explore other options to Zometa should I need to resume chemo.

[Jon49]

Re: Zometa - bad side effects - why continue?

by Jon49 on Tue Oct 15, 2013 4:56 pm

I have been taking Zometa every three months for the last four years and the only side effect that I have is I get a little tired and achy for a couple days after the infusion, it feels like I have a slight case of the flu, not enough to keep me in bed but noticeable. I started on Kyprolis in May 2013, my M-spike was 2.50, and in three months it was down to zero, and has stayed there so far. The drug has really worked for me and I hope that you will have a similar success with it. Good Luck.

[theresa.garciajones]

Re: Zometa - bad side effects - why continue?

by theresa.garciajones on Tue Oct 15, 2013 6:37 pm

The Aredia and the Zometa has been found to keep the cancer cells at bay. I have been on Aredia for almost 3 years and have never had any side affects, although I get 500 of fluids along with it.

[Patenaudee]

Re: Zometa - bad side effects - why continue?

by Patenaudee on Tue Oct 15, 2013 9:58 pm

Diagnosed with multiple myeloma and stem cell transplant in 2009. Zometa has been part of my maintenance therapy off and on for three or more years. For me, the length of time for intravenous delivery is absolutely crucial! The longer the better! I found at least one hour to be essential for me to avoid side effects like those I have seen posted here. It seems like a solution that is too simple, but research studies support this conclusion. Treatment centers don't like to take a long time for your infusion, as they need to free up seats quickly. Stand your ground for longer infusion times and you can benefit from the treatment without the awful symptoms.

[Gilbert]

Re: Zometa - bad side effects - why continue?

by Gilbert on Wed Oct 16, 2013 6:58 am

Took Zometa for 2 years every 3 months,always infusion late afternoon
18-24 hrs later achy all over took percoset went to bed early that night woke up next day ok
No other side effects,I was told only 2 years to take Zometa would be helpfull
Diagnosed 1/10/10 had 2 stem cell transplants in 2010 I have non- secretory multiple myeloma
64 and now now no meds being taken Zometa works Stay Srong

[KDay]

Re: Zometa - bad side effects - why continue?

by KDay on Wed Oct 16, 2013 10:32 am

I can confirm the experience of most who have written comments. I have received Zometa for the past three years on a quarterly basis. Two days after receiving the IV injection I have similar symptoms as described by others. Sometimes they are more severe than others. Ihaven't been able to determine the cause or remedy for lessening the impact. The first time i received the injection was the worst. Perhapsbecause i wasn't prepared for the outcome. Now i just accept it as part of my undesirable outcomes of my multiple myeloma treatments. My Oncologist also indicates that at least one study suggests that the Zometa positively impacts the treatment of multiple myeloma. It along with Revlimid can positively extend the period of time before a reoccurrence and extends length of life. I don't know where to send you for that study. You might ask your oncologist for that information.

Good luck with your future treatments. Try some of the remedies others have found to be effective.

[TomG184]

Re: Zometa - bad side effects - why continue?

by TomG184 on Thu Oct 17, 2013 3:42 am

My experience sounds fairly typical in that the worst of the side effects (bone pain, diarrhea, feeling "fluey" occurred the first time I was infused with Zometa, but have lessened with subsequent doses. I was on it monthly for two years, and now take it every three months. I notice that it does help if I heavily hydrate as I am being infused and for the rest of that day.

Good luck to you and if you stay on it I hope it does not hit you as hard.

[JBenton9758]

Re: Zometa - bad side effects - why continue?

by JBenton9758 on Mon Dec 21, 2015 1:04 pm

I was on Aredia for about 2 years and never had any symptoms that I could attribute directly to it. My extensive research, however, led me to two conclusions. First, there is no difference in outcome for the lowest dose versus the highest dose. Oncologists typically use the highest dose, probably because of the more is better syndrome. But the facts don't bear that out and side effects from any drug increase with increased dosage so always accept only the lowest dosage for these bone things. Secondly, these drugs have an extremely long half-life. The first dose can still be detected 10 years after administration. That, and other things, led the FDA to recommend that there was no additional benefit past two years of usage. I discontinued Aredia when I learned this and have had no bad outcome. My Oncologist and I agreed to go to a yearly bone density testing instead. Only if a definite bone weakening is seen on the bone density testing will I ever use these things again. Other than side effects, the thing that really worried me about this class of drugs is the possibility of jaw bone necrosis. Coming down with that would be worse than the Myeloma itself.

[Nancy Shamanna]

Re: Zometa - bad side effects - why continue?

by Nancy Shamanna on Mon Dec 21, 2015 1:26 pm

I also was on Aredia, for a period of three years. After the first year, the once a month dosage was lowered to every two months, and then to every three months. I could only be given a set amount of treatments, since it was thought that the Aredia can only do so much good actually. My oncologist was also concerned about ONJ occurring.

The Aredia helped me tremendously in building up bone strength again. It is not a nice feeling to feel your vertebrae collapsing, which is what happened to me! Testing for bone density showed that my bones are stronger now than at the time of diagnosis.

I hope that helps some readers!