I was diagnosed in February and after a mastectomy, finished chemo about 5/6 weeks ago. I was elated. Like a lot of women I found it really tough. They then booked my radiotherapy which is due to start today for 5 days, which I thought would be a doddle. But on Monday they decided to give me my first zoledronic acid infusion and, even throughout chemo, I don’t think I have felt his ill. My fever keeps on spiking at over 40, I’m weak, shivery and there isn’t a part of my body that doesn’t ache. Has anyone out there had a similar experience and would be willing to share? They say I shouldn’t delay my radiotherapy but it’s over an hour away and I genuinely will struggle to even make it! Will it make me feel worse doubling up?
Any wisdom would be very much appreciated. Sending everyone love and strength always
I’m sorry you are suffering. I’ve been on zoledronic acid for 13 years now. I do remember that when I first started it there were warnings about flu-like symptoms. These generally only happen the first one or two treatments and then you should be ok, also the symptoms normally only last a day or two, maybe up to a week.
Can you get anyone to take you to your radiotherapy appointment? The radiotherapy itself is non-invasive and quite easy (though toward the end of the plan, you may find you feel tired and possibly a bit sore)
I hope you start to feel better soon and radiotherapy goes well x
Hi Julie, thanks so much for getting in touch. It’s comforting to know that it shouldn’t happen after every infusion. I’m due to have it every six months for three years.
I’m actually feeling a little more human than I was this morning. I was lucky that the hospital were able to change my radiotherapy so I can now start tomorrow instead of today.
You are a hero, being on it for 13 years! I wish you all the very best and thank you again
Hi,
I’m so sorry you’re having to go through this. I had Zometer for the 1st time in September. I was fine on the day and the following day. Then the 2nd night it hit me. I’ve never hurt so much. My whole body hurt, had high temperature and couldn’t get out of bed. This lasted 2 days then I just felt tired for 3 days. I have my next one in March and I’ve took the week off work just incase it’s bad again. Although, I’ve heard subsequent treatments are tolerated better.
I wish you all the best, stay strong
x
Sorry to hear your experience which mirrors mine. You can see my account in earlierthread on Zoledronic which for me was the treatment from hell and far worse than chemo. Had all the symptoms you describe and it took nearly four months to feel well again so I abandoned them. For me the small amount of extra protection they provided did not balance against the devastating effect on my life.
Only fair to stress that chronic reactions like this are unusual so each person must make their own choice but for me it was pure poison and I won’t be doing it again
Hi, i too am on the Zometa infusions every 6 months for 3 years. After my first 2 i had no side effects whatsoever. So last week had my third thinking it would be fine but by the next day i felt so Ill, i was hot but physically shaking with cold, every part of me hurt, headache, i was exhausted, no appetite and just wanted to curl up. Today i am 7 days after it and started to feel better by yesterday, i really never expected the 3rd one to shake me up like this. Hope you made your radiotherapy session and all went well xx
Hi,
Hope you’re feeling better
We all seem to react differently
I had fever and slight aches after the first. The second my joints ached more and lasted a couple of days
After the third, my joints swelled up, hands wrists elbows and so painful
However, even worse I developed subluxation/dislocations of finger and wrist joints!!
I could not always get the joints to “reduce” It was horrible
Now 10 months after the last infusion I’m still having problems with my joints especially hands and wrists
I was referred to Rheumatologist and fully checked out to exclude any other rheumatological disease
None found
Hence, it’s decided that definitely no more Zoledronic infusion for me!
I recommend you speak to your team (do you have a number to call if you have a high temperature or really struggling?). A 40C temperature post-chemo is not good.
I had my 1st Zometa infusion while on chemo and I wasn’t too bad at all. I felt like I had a flu jab - just a bit achy and thinking I was coming down with something. Certainly not ill. It only lasted 36 hours (pm appointment) - went to bed on day 2 and woke up on day 3 absolutely fine.
I’m having #5 of 6 over 3 years at the end of the month and I’ve not even been aware of having it from the 3rd session.
Hope you feel better soon and get to your rads so that your treatment does not drag on.
Now that you mention it I have a debilitating pain in my right wrist, especially overnight and first thing in the morning. It never occurred to me that the infusion could be the culprit but maybe it is! I just assumed it was the anastrozole. When we’re taking so much who the heck knows! I find that sometimes putting a hot water bottle in my wrist can alleviate the pain. I wish you all the best
