XGeva/Denosumab for Bone Mets

Reposting to correct section:

Hi All,
Onc called me yesterday to discuss the option of Denosumab (XGeva) instead of Zometa. He said he was happy for it to be administered but said it would be 60mg every six months. I pointed out that this was the dosage for postmenopausal osteoporosis and that the FDA approved dosage for cancer patients with bone mets is different and is administered every four weeks. He said he would investigate and get back to me.

I checked it out myself and it is 120mg every four weeks. I have since sent him (via my BCN) the links to the relevant sites! I can’t believe I have to do this…

Have also requested a tumour marker test (never had one!) so I can get a baseline before the treatment begins on 27th Jan.

Anyway, just pleased to be getting this drug and not having to have the Portacath now. I’m also awaiting PET/CT scans. Will keep you posted.
Hugs
Anne Marie
xxxxx

Well done for checking - it’s unbelievable you’ve had to sort this out for yourself. Hope it all goes well.

finty xx

Thanks Finty!
Have you asked your onc about this drug yet?
Xxx

Not yet - I will do at my next appointment.
finty xx

Quick update from me. Had my first Denosumab (Prolia/Xgeva) injection last Wednesday and it was completely painless. Felt a bit tired and slightly nauseous now and then the next day but other than that felt absolutely fine, no flu like symptoms. Next one is 3rd March. Will keep you posted.

xx Anne Marie

Hi AM

Glad to hear it’s going well so far. Do you now how long you will be on it for? I know insurance companies only pay for Zometa for 6 months, and I think some NHS regions do the same - I wondered if it was the same for Denosumab, or whether you can stay on it indefinitely?

finty x

Thanks Finty!
Unfortunately BUPA will only pay for it for six months :frowning:
I wonder if after the six months my GP could prescribe and a nurse administer it?..
Xx

Aha - now know why my onc did not reply to my request for Zometa - I had 6 doses in the summer and am now on Bondronat tablets (and the rigours of the morning routine…) so requested that Zometa be considered as I’m now on 6 doses of TAX and thought the tablets would not be easy to manage/absorb whilst on the TAX. No reply to my letter - so I’ll raise it when I meet this week - but background on “rationing” is really useful info - so thanks for sharing and it’s good to know there are alternatives like Denosumab. It’s going to be “interesting” to see the impact of NHS changes and GP having stronger hold on purse strings - might make your GP more (or possibly less…) receptive to you idea Sweetanimo
Fran
x

Dear All,
Had my second treatment of Denosumab and virtually no side effects, just a bit of nausea and slightly tired the next day! I have since read that NICE are looking to approve this in Jul/Aug/Sep for BC bone mets use on the NHS-see below:

Company anticipates EU approval 3Q 2011
ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=4714

This would be fantastic news for me as my last BUPA paid treatment will be in July!

I hope everyone is keeping well. Looking forward to new and hopefully better BCC site next week!

xx Anne Marie

Tumour markers were normal too!!