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Zometa experiences first infusion

User
Posted 05 Jan 2020 at 14:51

Hi there, my Onco wants to do something proactive about bone density. I’ve been on Prostap and Abiraterone since diagnosis in May 2017. Tried alendronic acid back in Nov but it massively impacted on my guts so I had to stop having it. Onco is putting me on Zometa infusions starting on Wednesday and I’m worried about it having heard of some bad experiences that patients have had. Has anyone on the forum had any experience of this drug? I’m told most people tolerate it okay.

User
Posted 06 Jan 2020 at 16:32

Hi,


I have been having this 4 weekly (3 weekly when I was on chemo) since May 2017 and have no obvious side affects.

User
Posted 06 Jan 2020 at 16:52

Thanks. That's good to hear

User
Posted 06 Jan 2020 at 16:52
If you are giving this serious consideration, go and see your dentist first and make sure no work is needed.

Trevor_Boothe probably gives the best description of zometa on this forum. A number of members here have had it in the past; for 2 or 3 years, we couldn't have imagined anyone on long term androgen deprivation NOT having zometa. The side effects sound scary but are preferable to osteoporosis and very few here had the problems Trevor had.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 17:05

Thanks. It's not a question of considering it as my Onco has told me I need to be on it! I have had full dental check and know i need to be careful about dental health. Thanks for the input.

User
Posted 07 Jan 2020 at 19:15

Hi mate. I had a three infusions 6 months apart. By the third one I had lots of gum issues caused I believe from the  drug very slightly affecting my jaw which in turn slightly affected my teeth which in turn upset my gums. Mouthwash kept it tolerable however I convinced my  onco to let me come off it as I only had very early stage osteopenia and he agreed. Gums have been fine for the last 6 months and I take calcichew twice daily. It is likely that I will have to go back on zometa again at some stage as calcichew will not be enough.


running that I know you do and or load bearing weight lifting I believe strengthen bones .


the one thing I was not quite ready for (in my hospital) was that it was administered in the chemo room and everyone else there was having chemo. After the initial shock I bored them all with my running stories, it seemed to make mine and their infusions go quicker. I know you have done amazing things so be prepared to inspire those around you again!


fingers crossed for you

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Jan 2020 at 20:05

Thanks Kev. Let’s hope I get no side effects! Yes, I’ll bore them to tears about running 😂😂😂

User
Posted 07 Jan 2020 at 22:37

I developed a numb lower lip, right side, just after first dose of zoledronic acid. It’s still numb several weeks later. Oncologist doesn’t think it’s a side effect, and made me have a head MRI, but this didn’t show any obvious cause. 

User
Posted 08 Jan 2020 at 08:06

Hope you get it sorted ASAP

 
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