I have been on pamidronate 3-weekly now for almost 7 years. My bone mets are extensive and pamidronate has worked very well for me in keeping the bone disease stable. The past 2 years I have been getting a lot more problems with pain so my consultant is going to change the pamidronate for zometa (zoledronic acid) as he says it is stronger and may help.
Has anyone changed to zometa and can tell me if they have noticed any effects with the first infusion or ongoing changes/problems.
Dawn
xx
Hi Dawn,
Makes a change for me to be replying to try and help you instead of the other way round !
Zometa is the only bisphosphonate I’ve been on and it’s just coming up to a year. After the first one I did have a bit of flu like symptoms but had been warned about that and after 2 days it went and I haven’t had it since. I do seem to get slightly more achy joints for a couple of days but put that down to the zometa doing something. I drink water while having the infusion as that’s supposed help - something to do with zometa being processed through the kidneys.
My last bone scan showed improvement in existing areas (but then I know mine are nowhere near as extensive as yours) but a ‘suspicious’ new area that may or may not be spread - could be rads damage. Next scan in Dec.
The only problem I have is the monthly hunt-the-vein saga.
Hope it works wonders for you and this has been of help.
Liz x
Thanks Liz for replying. I too am one of those who needs the help of others here LOL. It is quite hard to find someone who has made the switch after so long and I am curious to see if I notice any difference. I have never really had any problems with pamidronate and the hunt the needle, thank goodness, is no longer a problem as I had a port put in 3 years ago and I wouldn’t be without it given our circumstances. I will be so happy if just switching bisphos resolves the pain problem - after 2 years now with it, it s getting a bit much.
Dawn
xx
Hi Dawn
I am on zometa every 4 weeks and will have my 4th treatment in a couple of weeks. Just like Liz, I can remember the first time I had flu like symptoms and was on the couch for a couple of days but since then have had the treatment with no problems. I also noticed a slight metallic taste on the day after but its not too unpleasant and soon goes. I cant comment yet on how effective it has been but am having CT scan next week. You probably need someone who has been on it longer than me to comment on long term effects. I must admit I wasnt aware of how zometa acts to help with pain relief unless the effect of strengthening the bone somehow alleviates the pain.
I have recently had some stiffness and clicking in joints which my BCN thinks is due to the combined effects of zometa and femara together.
I havent been told to drink water but will give it a go next time.
Regards
Julie x
Hi Dawn, I started on Pamidronate ten years ago, then years later went onto Zometa, then tried Bondronate tablets and I am now back on Zolidronate again. I have been on Zometa for around 3 years now, maybe more and have found it very good. I have had no obvious side effects with it, just sometimes feel tired after the visit to the hospital but that wears off after a rest when I get home. Funnily this does not always happen and I can feel no difference at all sometimes and even manage to get OH to take me for a chinese meal after Zometa! It is meant to take much less time to infuse…technically…the pamidronate took much longer…but sometimes the staff are so busy chasisng their tails that I have been in the ward much longer than the 15/20 minutes the infusion is meant to take. Plus a flush at each end the same as Pamindronate. It seema so work just the same as Pamidronate but as you know I have been on Cappacitabine on a few occasions when my markers rise too much. Sorry this is a bit garbled. PM me if you need to ask anything I have not covered. LOve |Val XX
Hi Val,
I had forgotten you told me you had been on pamidronate previously. Why did they change you to zometa?
Julie - they want to try zometa because they think the nervepain is being caused by one of the bone tumours starting to grow again (albeit very slowly) and this could be causing the pain. With zometa being stronger than pamidronate it is hoped that tumour might respond to the change - and so shrink and reduce pressure on nerves. I think that made sense to me. It was also suggested that I should consider some chemo but I have to confess after the amount I have had to have over the years it did not appeal! and for now I have said no.
Dawn
xx
Dawn,
Forgot to say that like Val I suddenly get very tired the night or the night after I have my zometa but it’s no problem as at least I get a really good night’s sleep !
Once they get the vein it takes about 30 mins in total with the 15 min infusion and flushes before and after.
Liz
Hi Dawn
Thanks for the info that makes sense. You are in a different position to me as I only have cancer cells in the bone and no actual tumours there. or at least that is what I am told. My scan is ON Wed next week and I can let you know what results I have had from the zometa if you want me to. My own feeling is the treatment is working well on my bones but not having much effect on the tumour in my breast but you never know whats going on inside do you.
I agree that the treatment is quick, 20 mins for the drip and 5 mins either side for a saline flush. The nurses make me stand at the sink for 5 mins with my hands in warm water. that seems to do the trick with finding a vein.
Hope you are feeling well today.
Regards
Julie