Post by stayingpositive on Apr 22, 2009 18:19:13 GMT 1
Hi all,
My husband had Docetaxel as second line treatment in Jan 09 which failed. Onc has immediately stopped Docetaxel treatment as it's obviously not having any effect. We initially asked our Oncs about Tarceva last year and were told "let's hope it doesn't come to that." Now we are asking for Tarceva as the next option for treatment, but have been told that now because NICE has finally ruled their guidance is that Tarceva should only be given as second-line treatment and offered as either Tarceva or Docetaxel!! All very well, but WE WERE NEVER GIVEN THE OPTION OF TARCEVA AT SECOND-LINE STAGE! We were simply given Docetaxel and nothing else was offered.
Our Onc has applied for funding through the PCT but they are coming back saying "it's unlikely to be funded due to the NICE guidance." I am of course challenging this, but after having spoken to the Chief Pharmacist who is making the ruling he says that we should have been offered Tarceva or Docetaxel as second-line and as we haven't been offered treatment in line with NICE guidance the hospital Trust itself should pay for the treatment! So I am working on that needless to say - but what I need to know is anyone else receiving Tarceva as THIRD LINE TREATMENT ON THE NHS IN THE UK?
If you are, please post here who the PCT is and when it was funded, as we are looking at building a case based on post-NICE guidance funding - i.e. after November 2008. We are looking at other precedents set - we know that Tees PCT and it seems UCL in London has funded Tarceva as third line in the past.
Your experience and info would be absolutely invaluable as we are not going to take NO for an answer!
We feel very let down by the NHS so far and the treatment we have received - we routinely wait for 2 1/2 hours before we ever get seen by the Oncologist and when we do, it's a rushed 10-15 minute appt where the results are quickly looked at, and then we're ushered quickly out the door. We are now demanding better treatment, asking lots of questions, researching the latest effective treatments and asking for them!!
My husband had Docetaxel as second line treatment in Jan 09 which failed. Onc has immediately stopped Docetaxel treatment as it's obviously not having any effect. We initially asked our Oncs about Tarceva last year and were told "let's hope it doesn't come to that." Now we are asking for Tarceva as the next option for treatment, but have been told that now because NICE has finally ruled their guidance is that Tarceva should only be given as second-line treatment and offered as either Tarceva or Docetaxel!! All very well, but WE WERE NEVER GIVEN THE OPTION OF TARCEVA AT SECOND-LINE STAGE! We were simply given Docetaxel and nothing else was offered.
Our Onc has applied for funding through the PCT but they are coming back saying "it's unlikely to be funded due to the NICE guidance." I am of course challenging this, but after having spoken to the Chief Pharmacist who is making the ruling he says that we should have been offered Tarceva or Docetaxel as second-line and as we haven't been offered treatment in line with NICE guidance the hospital Trust itself should pay for the treatment! So I am working on that needless to say - but what I need to know is anyone else receiving Tarceva as THIRD LINE TREATMENT ON THE NHS IN THE UK?
If you are, please post here who the PCT is and when it was funded, as we are looking at building a case based on post-NICE guidance funding - i.e. after November 2008. We are looking at other precedents set - we know that Tees PCT and it seems UCL in London has funded Tarceva as third line in the past.
Your experience and info would be absolutely invaluable as we are not going to take NO for an answer!
We feel very let down by the NHS so far and the treatment we have received - we routinely wait for 2 1/2 hours before we ever get seen by the Oncologist and when we do, it's a rushed 10-15 minute appt where the results are quickly looked at, and then we're ushered quickly out the door. We are now demanding better treatment, asking lots of questions, researching the latest effective treatments and asking for them!!