8 months into Niraparib and it's still working for me .......tumours have not only stabilised but actually reduced in size - when we told the children you could literally see a burden lifting from their shoulders. The side effects are not the easiest, similar to chemo really although theres no hair loss. But at least they're predictable and they don't build up over time.
As some of you know, I've been writing to my MP, NICE, etc as I believe this drug should be available to all women who could benefit from it through the NHS. Through My MP I've had an email back from Andrew Dillon, chief exec of Nice. He basically re-iterates the position of NICE re Niraparib (they won't fund it yet for standard prescription but have referred it to the Cancer Drugs fund), but his language is encouraging. He says the argument for women for whom it is indicated, to have access to Niraparib is "compelling', and goes on to say,
"The information we have about Niraparib is encouraging and we would like to make it available ...... through the cancer drugs fund. It is perfectly possible for the company (Tesaro) to make this work and we hope they will do so. "
The negotiations are going on now and the final decision will probably be made in the next few weeks, so fingers crossed.
Hope everyone is as well as can be, and that the day will soon come when all women have access to new drugs that will help them through the NHS.