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Bisphosphonates after 2 years

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User
Posted 04 Nov 2019 at 13:34

At my Onco meeting last week he said “as you are going to be on this treatment for a long time there is emerging evidence that we should be proactive about bone density issues so I’m going to get your GP to prescribe bisphosphonates” I was diagnosed stage 4 May 2017 with widespread mets through the skeleton and have been on Prostap plus Abiraterone (funded by private insurers as, disgracefully, still not available as 1st line treatment on the NHS). PSA not recordable for 2 years and recent DEXA scan says already in Osteopenia. Great to hear “a long time” but a bit concerned about bisphosphonates. Has anyone experienced this treatment and how was it?

User
Posted 04 Nov 2019 at 21:05

I believe one of the key things is to be sure there's nothing wrong with any teeth, roots specifically. You might want to get a special dentist checkup appointment and explain you are starting on biphosphonates. They would probably do a cone beam X-ray unless they have a recent one, and then fix up anything suspect.

Tooth infections while on biphosphinates can result in the jaw bone dying in the area.

User
Posted 05 Nov 2019 at 17:50

I had private medical insurance at diagnosis. Abi is only available on NHS for CRPC and I got it up front instead of standard NHS treatment of chemo. I think it’s a bloody disgrace that men have to go through chemo unnecessarily when Abi is actually more effective and doesn’t impactbQoL as much as chemo 

User
Posted 05 Nov 2019 at 20:34

100% agree!

 

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User
Posted 04 Nov 2019 at 19:10
Which one will you be on? I have just started on zoledronic acid but too early to say what effect it’s having. Good luck!
User
Posted 04 Nov 2019 at 20:07

They’ve not told me yet. Down to the GP do I guess it will be daily or weekly tablets

User
Posted 04 Nov 2019 at 21:05

I believe one of the key things is to be sure there's nothing wrong with any teeth, roots specifically. You might want to get a special dentist checkup appointment and explain you are starting on biphosphonates. They would probably do a cone beam X-ray unless they have a recent one, and then fix up anything suspect.

Tooth infections while on biphosphinates can result in the jaw bone dying in the area.

User
Posted 04 Nov 2019 at 22:35
Dental check up is essential before you start, as stated above, but generally speaking, Zometa is well tolerated. There was talk a few years ago about all men on long term HT having Zometa but it went quiet.

I think it is worth you double checking the thing about abiraterone though, it has been approved for NHS prescription for years now for men who are castrate resistant so I am struggling with why you would still need to get it on private prescription?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Nov 2019 at 17:50

I had private medical insurance at diagnosis. Abi is only available on NHS for CRPC and I got it up front instead of standard NHS treatment of chemo. I think it’s a bloody disgrace that men have to go through chemo unnecessarily when Abi is actually more effective and doesn’t impactbQoL as much as chemo 

User
Posted 05 Nov 2019 at 19:42
Abi has been available to chemo naive men for ages.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Nov 2019 at 20:09

Still not available to men as first line defence otherwise though and that is a disgrace. I’m lucky to be able to pay for now but it should never come down to that. Men have been neglected for too long and it’s time we were way more vocal 

User
Posted 05 Nov 2019 at 20:34

100% agree!

 

User
Posted 05 Nov 2019 at 22:30

I have a possible future interest in this as somebody who may be facing recurrence after radiotherapy. I checked out the NICE guidelines and they seemed to indicate that abi should be considered before chemo. Tried to copy the link but it wouldn't play for some reason.

 

 
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