Nivolumab/ Opdivo
Hi everyone,There's quite a bit of talk on the Inspire forum about Nivolumab. There are trials happening & there are also patients accessing it without cost via the drug company.
We are in Australia and so far Nivolumab is only approved for melanoma and I think it costs about $100,000/ year.
Im wondering if your oncologists in USA/ England etc talk about it at all & if they see it as a promising GBM treatment?
Best wishes to all. Lisa
Hi Lisa
ReplyDeleteMy son received his first Nivo infusion on Wednesday. We had to ask for it, but both of my sons NO's were very supportive of the idea. He is receiving the drug without cost from Bristol Myers.
Opdivo has been offered by one of my NO's here in Southern California. I have not followed thru with this treatment since I am currently stable. Therefore I do not know if it is a covered treatment.
ReplyDeleteHi i no that Bristol Myers are the company sponsoring this treatment and they have quite a few locations around the world using nivo with avastin may I ask where you are based ?
ReplyDeleteHi Dale, I'm in Sydney Australia. There was a trial here but I haven't heard of anyone having treatment outside the trial. Certainly more talk O/S about Nivolumab. I'm wondering if it's a treatment I should be looking into for my brother.
ReplyDeleteThe companies have international access programs, but they are often different from the US-based options. The only way to know would be reaching out to BMS or Merck. The oncologists can do it, but it can be a lot of work for them and sometimes institutions will block it for liability concerns.
ReplyDeleteIn general, this is effective in tumors with mutations. If Avastin can be used in combination or has been used, this can drive T-cells into the tumor making treatment more effective.
Hi, My father was diagnosed with GBM in Perth last year, and sadly passed away shortly afterwards. I don't know of nivolumab being prescribed for GBM in Australia. Two things I would look into are
ReplyDelete1) Dendritic cell vaccination (don't need tumour as can be made from a bunch of synthetic brain tumour antigens) - Dr Nicol is the Haemato-Oncologist who does this privately (Brisbane), and the price is quite reasonable compared with other things.
2) If your husband is CMV+ in blood, then it is worth looking into CMV vaccines. There was a trial running in Melbourne and it may be recruiting new or recurrent GBM patients now. I have the contact details.
please e-mail me for any other details or questions.
All the very best
Matthew.
Hi Matthew, I've just seen your reply, thanks. Sorry about your dad.
DeleteMy brother is having treatment with Dr Nicol and is so far very well 21 months on!
There's much more talk about Nivolumab OS. Sadly I think we miss out on some things in Australia.
I know I'm late to the party. I just heard back from Bristol Meyers today that we've been approved for patient assistance and will get the drug. As to the original question, no, it was not offered or suggested by our NO or even our Oncologist (non neuro specific). Our NO is running a trial of Nivolumab but Dad does not qualify and I was told it is $6k per 2 week infusion if you want to pay out of pocket. It's possible he didn't know about the patient assistance program. Luckily I came across posts on FB. Dad has quit responding to Avastin alone so hopefully this can still help us...
ReplyDeleteHi Annie, where does your dad live? We are in Australia so I'm not sure if the access is the same.
DeleteGreat that the drug company has approved it for you dad :)
We're in the US. Here is the link: http://www.bms.com/products/patient-assistance/pages/opdivo-uninsured.aspx Might be worth a quick phone call.
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