[maldemerParticipant]

Good day
Apologies if there’s another thread on the forum that I’ve failed to locate, but I’m starting a zolendronic acid (Zometa) regimen in just about under a fortnight and wondered if others could share their experiences (good and bad!)
Thanks in advance
Nick

[rabbitParticipant]

Hi Nick,

I think my experiences come in the ‘bad’ category.

The first time I had Zometa, I was fine for 2 days, then as I parked to go to the gym, I felt all energy drain from my body in an instant. I turned around and went home to bed.

Since then, I either get this loss of energy starting 2 or 3 days after Zometa and going on for around 2 days, or I get the ‘flu-like’ symptoms which my nurse warned me about (but worse than they implied).

Let’s just say that I was originally due to get Zometa every 28 days. After I pushed back on this (because the side effects were distinctly unpleasant), this changed to every 3 months (or to be pedantic, every 3 x 28 = 84 days).

At least I know to anticipate feeling horrible then, so I plan accordingly. My next Zometa is due next week, so I am not planning anything more strenuous than reading and watching TV a couple of days later, as I probably won’t feel able to do much.

[maldemerParticipant]

Rabbit, Thanks for this helpful information. I’ve survived DVDT, Melphalan & the current maintenance chemo of Lenalidomide with minimal side effects so far, so I’m keeping my fingers crossed that my good luck continues !

[kevinParticipant]

Hello

I have been having a 3 monthly infusion of zometa for about 6 years now and have not noticed any side effects in that time.
Best wishes
Kevin

[jennyaParticipant]

Hi

I’ve been having monthly Zometa infusions since I was first diagnosed in December 2022 and I don’t seem to have had any severe side effects.
Occasional niggling headache 3 or 4 days after but nothing too bad, however, everyone is different.

Hope all goes ok.

[maldemerParticipant]

Many thanks, Kevin 🙏

[maldemerParticipant]

Thanks Jennya – I’m hoping so too! Nick

[robinfParticipant]

Hello all!!
My first time posting on the forum. I was diagnosed with MM in July 2023. I have been on daratumumab bortezomib and dexamethasone protocol since February 2024. I begin my first dose of Zometa this week.
My current side effects are neuropathy in my toes, constipation and periodical dizziness, and a bloated belly from the subcutaneous injections.
Not looking forward to the Zometa.

[maldemerParticipant]

Hi Robin – welcome to the forum!
I’ve now had my 2nd dose of Zolendronic Acid/Zometa and my experience has similarities to those of the 1st reply (above) to the OP. The first time the ‘infusion’ took place over 15 mins and I was fine for just u der 36 hrs. Then – in the space of about 90 seconds – it felt as though someone had worked me over with a sledgehammer!! Total body ache, felt v. unwell and kidney pain as well (which was my biggest concern). Symptoms gradually eased off over 2 days, with the kidney pain the last to disappear under a deluge of drinking water! Second dose was last week – on the advice of a CNS I got them to take 30 mins over the I fusion. Symptoms again arrived about 30 hrs later but considerably milder and lasted only 1 day. Was already pre-loading on water so kidneys weren’t too bad.
Overall it hasn’t been a fun experience, but even if the symptoms had stayed as bad as the first session I wouldn’t hesitate to keep going with them.
I hope you have an easy ride!
Nick

[twinzParticipant]

Hi

I had my final Zometa last week (24 sessions) and cannot say I have experienced any side effects.

[rosietheriveterParticipant]

I started Zometa infusions about 20 months ago and a couple of days after the first one I was at a function where alcohol was served. I had what I thought was a normal amount, but after a short while I was suddenly sick and felt totally wiped out. Since then I have avoided alcohol around the time of the infusions and I have not had any side effects.

[maldemerParticipant]

Hi RosieTheRiveter – I’ve had 3 doses now; 2nd was easier than the first, and 3rd was easier than 2nd. Mainly feels like a 24 – 36 hr dose of flu. Have to say I’m really not enjoying alcohol at the moment; drinking zero-alcohol beers out of preference rather than need (although in truth I’ve always had a pretty weak head for alcohol!) stay well! Nick

[johnsuffolkParticipant]

I have had zometa every 4 weeks since first diagnosis in 2020 and have had no side effects but drink very little alcohol.

[tony642Moderator]

Hi there,

I had monthly infusions of Zometa, and it made me feel generally rubbish and listless. I was on dialysis at the time so I don;t kno if that had an effect. However, I have to say that after a few months, I did get used to it and eventually did not suffer from any side effects. but I think you have to weigh up the positives and negatives, so is it worth putting up with the side effects for the benefit it gives you?

Regards, Tony

[tony642Moderator]

Hi there,

I had monthly infusions of Zometa, and it made me feel generally rubbish and listless. I was on dialysis at the time so I don;t kno if that had an effect. However, I have to say that after a few months, I did get used to it and eventually did not suffer from any side effects. but I think you have to weigh up the positives and negatives, so is it worth putting up with the side effects for the benefit it gives you?

Regards, Tony

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