After effects of Zometa infusions and other meds

Thank you for sharing your experience. It's completely understandable to be concerned about new side effects, especially after a Zometa infusion. The shaking, stiffness, and rapid heartbeat you're describing sound very distressing.

It's a great idea to check in with your medical team about any symptoms you're experiencing. They can help determine if it's a normal reaction to the medication or if something else is going on. This community is here for you, so please keep sharing as you navigate these challenges. Wishing you all the best.

Hello I’m sorry to hear about your side effects. It’s hard to know what’s what with these medications. I’ve been having Zometa infusions for 2 years 2 more infusions to go I am also on Exemestane. From what  you describe it sounds more like Exemestane from my experience. The only side effects I’ve had from Zometa have been flu like and fatigue. I have been coping reasonably well on Exemestane for a year but the hot flushes where I’m drenched in sweat have increased considerably to every 40 minutes for the last few months. Horrible. I hope your side effects settle soon. Best wishes 

I have had 5 zometa infusions and unlike some I react every time. The reaction starts about 12 hours after the infusion and consists of flu like aching, feeling shaky and tired. Lasts for about 24 hours then goes.

I had my first one in with a chemo infusion, so felt bad anyway, by my second one I was just taking letrozole and the other three I’ve had have been while I’ve had abemaciclib as well. I expect my final  one next January will be the same and I will make sure I don’t have to do much the day after. 
I’ve never had anything that I felt was from it as much as 3 weeks later. I do have times when I feel randomly a bit worse/ better and I just assume it’s the medication or a transient illness. Doesn’t mean it couldn’t happen though as you describe!

All the best with this xx

Thanks all. I plan to contact my oncologist to see if a short break from my meds might help. 

My husbands first Zometa was awful reaction, pain in every joint in his body, which lasted about 3 days. Hes had 3 Zometas now & each one the side effects have eased, but he still as joint pain & stiffness. Lasting about 24/48 hrs. I hope you get answers to your side effects

Hi. I have just read your message detailing the side effects of your Zometa infusions and they sound dreadful.

Can I ask why you were given Zometa infusions.

I had my Oestrogen positive Breast Cancer diagnosis in early 2021. It was stage 2 and thectumour was in my breast, and thrn the cancer has spread to my lymph nodes, chest wall and clevical (collar bone).

I was told to go for chemo first so started 3 weekly chemo sessions starting with EC syringe fed chemo x3 then had ultrasound showing it hadn't touched the tumour so then told to do 3x docetaxol every three weeks. The side effects were awful fir all of the four months. Lost my hair all over body including head, felt extremely fatigued, nauseous, had ulcers in my mouth and on my tongue, couldn't eat etc. 

Thrn had right mastectomy and lymph node dissection in the July of that year, had a couple of months of recovery time and then started 3 weeks of intense radiotherapyvwhere unfortunately it made me develop infection in my skin at top of my chest making it raw so had to be put on antibiotics. 

In the January of 22 I started hormone treatment of Anastrozole daily tablets with cslci-d calcium and vitamin D supplements. I must admit my mind was so confused and I was never thinking straight from that moment onwards and could never remember things so every night when I should hsve took my cslci-d I kept forgetting.

Four years almost on from that i had alot of discomfort in my lower back and hip and had bone density scan where it has now shown i have osteoporosis. Thr consultant has recommended me starting weekly alendronic acid treatment. When I read it can damage your esophogus and gums in your mouth I am very apprehensive to start it. I cannot swollow tablets and already find it difficult to deollow my anastrozole tablet which is tiny so there no way I gonna be able to dwollow a tablet of alendronic acid. I also am worried I won't remember the weekly strict regime of taking it first thing in the morning, then having to stand upright for over half an hour as it needs to reach your stomach quickly so it does not come up back into your esophogus.

Have you ever had this treatment and is so, how did you get on and what are the side effects please.

I already endure a load of side effects with my anastrozole and now this could make me have more.

I just want me and my life back.

All I know is this week my back and hips have been hurting so much I cannot take this much longer. I feel 82 not 52.

Please if somebody can advise me or give me a bit more information about alendronic acid treatment and whether the NHS will provide me with a liquid version I would be grateful.

I know I need help to manage my bones, just don't know what to do.

Tracey, I’m so sorry to hear what an ordeal you’re going through. Have you thought of contacting the Royal Osteoporosis Society?

They have loads of info on their website about osteoporosis and related drugs including alendronic acid (and yes it is available in liquid/powder form via the NHS)