WEll, I did the grown up thing today and took control of my treatment for bone mets. I have been having more and more problems with zometa, really bad aches and pains and such horrible weakness after each treatment that just getting off the sofa was a struggle.
I tracked the effects for a few months and a definite pattern emerged - treatment on a Tuesday, feeling OK on Wednesday then crap on a Thursday, sometimes right through till Sunday.
I pushed them at the Marsden today to prescribe ibandronate for me. They were a little worried because apparently it is mainly used when there is no active bone disease and they are not sure how dormant my bone mets are. But I have a bone scan coming up and if they think that ibandronate isn’t right then they will put me on pamidronate.
I feel really good having taken decisions into my own hands. Plus I am really relieved that I don’t have all those crap side effects to look forward to.
Deirdre
Good for you Dierdre!! Thought for a minute you were giving up altogether, but for sure a change is woth a try. I reacted dreadfully to Zometa the first time eith the pain and weakness continuing 3 weeks or more, but fingers crossed I have been OK after my second. As they say we are all different---- so good luck!
Well done, Deirdre! SOunds a really good decision - have you already started on the ibandronate?
Kay x
Hi Deirdre
Sounds like good decision…and that feeling of being in control is so good.
Jane x
Hi Deirdre,
I only had one go at it that was 5 years ago, I was so ill it was awful. I am on pamidronate get a few pains a day after infusion but it is very easy by comparison.
Love Dbesxxx
Hi Deirdre
Good luck with the ibandronate tablets – hope they work as well for you as they have for me, without any nasty side effects (what’s that about only using it when bone mets are “dorment” – mine sure weren’t dormant!)
Marilyn x (the Bondronat Queen)
Hi Deirdre,
Good for you…
we have little choice with our treatment so its so good when we can take control.
Best Wishes
Tess
Hi Deidre,
I hope that this decision is going well for you.
I wanted to ask a (hopefully) relevant question. I have been on monthly Zometa since May’08 and for the last few months, have been having quite a lot of pain in my collar bones, especially when I try to take off/put on a t-shirt as I have to raise my arms over my head.
I have mentioned it to my onc but she just shrugs! Also am very stiff in my hips and find it difficult to cross my legs when sitting down.
Otherwise for the last 6 months I have been doing OK - bone mets disappeared on scan, and altho’ I continue to have Taxol once a month and Avastin twice a month , I am able to do most things and am less tired.
So the question is, so you think that this pain could be due to the Zometa?
Thanks,
Wish you all the best,
Penny
Hi Penny, sorry you are having aches and pains but great news that the bone mets are healing.
My aches and pains were not always there - they used to come on a few days after the infusion. I monitored them for a good few months before deciding that they were due to the zometa, but even now I am not totally sure they were. They could have been due to my week off chemo.
Zometa is a funny old drug and I think it can cause aches and pains. Maybe you might push your onc a bit more for an explanation - shrugging doesn’t sound very helpful to me!
Deirdre