Hi ladies,
Has anyone heard of or been given the above? The trials show that it is better than Zometa and can be given by subcutaneous injection rather than IV. See link below:
Anne Marie
xxxx
Hi Anne Marie
My onc has mentioned it, but I wasn’t sure if it was actually available yet. She said it has the same jaw necrosis potential as Zometa, but otherwise sounds very good. I will ask again next time I see her. Have you asked if you can have it?
finty xx
Hi Finty,
No I haven’t asked yet, only just found out about it after my sister read about it online. I will also ask next time I speak to onc.
xxxxx
Some more info. Trying to find out if available in the UK.
xxx
Anne Marie
There are documents on the NICE website relating to the subject. Looks like it’s in consultation.
Hi Tina!
I think it’s recommended by NICE as:
“a possible treatment for preventing bone fractures in some postmenopausal women with osteoporosis”
As I’m taking Femara and have bone mets, I’m at risk of bone fractures osteoporosis so should be able to have it!!!
xxxxx
Anne Marie
Hiya,
did you see these ones?
nice.org.uk/media/642/E6/DenosumabBoneMetDraftScope.pdf
evidence.nhs.uk/search.aspx?t=Denosumab
guidance.nice.org.uk/TA/Wave21/6
Another item to add to the list of questions for the lovely onc, forgot to ask, did you enquire about the Aspirin?
Happy New Year to you & family! X
Hi Tina,
Saw two of those links, third one looks interesting! - I also have osteopenia (DX by DEXA scan a few years ago!) - what don’t I have LOL!
I didn’t ask re aspirin - will check next time I see the smelly onc!
Happy New Year to you all too!
Hugs,
xxxxx
Hi All,
Onc called me yesterday to discuss the option of Denosumab 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
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Just had Onc. on phone - PET scan showed nothing other than the bone mets and some lymph node activity in breast/axilla. So good news!
He has also agreed to give me the Denosumab at 120mg every four weeks - sooo pleased about this and also to do a tumour marker test CA153.
It’s taken a while and a lot of pushing but finally am happy with my treatment plan.
xxxx
That’s great news xxx
I was very interested to see this thread. Keep us posted with any news about it ladies. I see my Oncologist in a week and will ask her too. Thanks for all the links. Love Val
Am really interested in this info on Denosumab as I’m not sure my Bondronat tablets are holding my bones mets (I had Zometa last June-Aug before these tablets); bone scan is being booked as part of research study so I will soon know. It’s worrying that some of us are having to make these suggestions to the “experts”… so thanks for sharing your expertise everyone. I’ll keep in touch with this thread now so hope you can update on your progress
Best wishes
Fran
Had my second lot of Denosumab and SEs were again very manageable. I also had a tumour marker test a couple of months ago(CA153) and it was normal. Will be having another one next week after my third Denosumab. I’m also going to have a PET/CT scan in about three months’ time to see how the mets are doing.
xx