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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Zometa side effects: are they really that bad?

by JBarnes on Tue Apr 29, 2014 11:32 pm

After 16 monthly treatments of Zometa I've been getting really flu like sick for three days after the infusion. Prior to the two last treatments I had minimal side effects.

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: Zometa side effects: are they really that bad?

by Wayne K on Wed Apr 30, 2014 11:02 am

It's been rough for me. I had the flu symptons start about 24 hours after the infusion and they lasted about 24 hours.

My biggest problem has come from fatigue. I've never been as tired as I have been since the infusion. I do have to point out that I also started 15mg of Revlimid 6 days prior to the Zometa. I don't know if it is the combination, or if one or the other is the main culprit? I did not notice much in the way of side affects between the start of the 2 drugs, however.

I have slowly recovered to the point I'm almost back to normal, but I start a new round of Revlimid today and Zometa next Tuesday, so I'll be prepared to pay close attention to the time frame this time.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70

Re: Zometa side effects: are they really that bad?

by Karen on Wed Apr 30, 2014 2:13 pm

During my first round of treatment (Velcade/Revlimid/dex), I had some shortness of breath after my first infusion of Zometa, but then no other symptoms from subsequent treatments, which lasted about 2 years.

I've been on a Cytoxan/Velcade/dex regimen since last December, when we also added the Zometa back in after a break of several months. I seem to be experiencing more of a reaction on the days I get my once-monthly dose of Zometa along with the other drugs. No muscle pain, but general fatigue and feeling worn out. But fortunately it only lasts a couple of days.

My only guess is that I'm also having more side effects from the Cytoxan than I was from the Revlimid (nausea, fatigue), so perhaps that's adding to my response to the Zometa. It is hard sometimes to pinpoint what is causing what. At any rate, I think the benefits of the Zometa outweigh the side effects I may be experiencing.

Karen
Name: Karen
When were you/they diagnosed?: December 2010
Age at diagnosis: 51

Re: Zometa side effects: are they really that bad?

by Benny on Fri Dec 23, 2016 3:44 pm

Had my first Zometa infusion Tuesday. Yesterday was AWFUL. I had full on rigors with shaking, fever, and chills. Lasted overnight and still had today while seeing patients (I am a doc). Tylenol (paracetamol / acetaminophen) is helping, but I sure hope the next infusion is not as bad.

Benny
Name: BM1971
Who do you know with myeloma?: Me
When were you/they diagnosed?: 12/2/16
Age at diagnosis: 45

Re: Zometa side effects: are they really that bad?

by mikeb on Sun Dec 25, 2016 12:20 am

Hi Benny,

Sorry to hear that your first Zometa treatment led to such a nasty reaction the following day. I've had a few of those nasty "days after," but most Zometa treatments have been ok. It seems like a few things have helped me, and other folks have mentioned these guidelines as well.

  1. Ask for the Zometa infusion to be done over a period of at least 30 minutes.
  2. Make sure you are well hydrated before, during, and after the infusion. I've started bringing a bottle of Gatorade with me and drinking it during the infusion.
  3. Don't get a flu shot on the same day as the Zometa infusion. (That combination led to my worst day after.)
I hope these tips help with your next Zometa treatment. Please let us know how it goes.

Best wishes to you. Happy holidays!

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Zometa side effects: are they really that bad?

by cdnirene on Sun Dec 25, 2016 11:29 am

I have read that taking acetominophen and Claritin starting 3 days before infusion and staying on for a few days can help, along with hydrating and getting IV fluids before the Zometa. I have also read that others have requested longer infusion times of 45 minutes to an hour and that really helps.

Personally, I have never felt any side effects but I always ensure I am well hydrated. My infusion time is 20 minutes. I have been in remission and off all drugs except for Lipitor during the 18 months I have been taking Zometa, which may or may not explain why I have no side effects.

cdnirene
Name: Irene S
Who do you know with myeloma?: me
When were you/they diagnosed?: September 2014
Age at diagnosis: 66

Re: Zometa side effects: are they really that bad?

by PositiveChris on Sun Dec 25, 2016 2:32 pm

Benny, I had the same "Zometa hangover" last night from my Friday injection. My temp got up to 102 and I had fever and chills and a light hacking cough. Since I was in the hospital, they gave me antibiotics. Feel much better today.

PositiveChris
Name: Chris
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 11/28/2016
Age at diagnosis: 42

Re: Zometa side effects: are they really that bad?

by Benny on Tue Dec 27, 2016 9:51 am

Thanks all!

I will try the hydration and pre-medication.

Chris - Sorry to hear we are SO on the same page.

Benny
Name: BM1971
Who do you know with myeloma?: Me
When were you/they diagnosed?: 12/2/16
Age at diagnosis: 45

Re: Zometa side effects: are they really that bad?

by PositiveChris on Tue Dec 27, 2016 12:09 pm

Hey Benny,

My culture came back positive for rhinovirus, so looks like it wasn't a Zometa thing. I must have caught it at the hospital.

PositiveChris
Name: Chris
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 11/28/2016
Age at diagnosis: 42

Re: Zometa side effects: are they really that bad?

by rick on Tue Dec 27, 2016 8:50 pm

My husband's first Zometa infusion was his worst day of induction, with fatigue and fever and pain.

There's pretty good research on the effects of bisphosphonates on IL-6 and TNF levels, for example:

Dicuonzo, G, et al, "Fever after zoledronic acid administration is due to increase in TNF-alpha and IL-6,", Journal of Interferon & Cytokine Research, Nov 2003 (abstract)

and IL-6, in particular, is thought to be important in myeloma boney lesion formation and growth.

So the first infusion we hope was, and thought of as, his myeloma's "last hurrah" while the induction chemo was taking hold.

He has had no problems with later infusions, though he is still using cetirizine (Zyrtec) on Zometa days.

rick
Name: rick
Who do you know with myeloma?: husband
When were you/they diagnosed?: nov 2015
Age at diagnosis: 50

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