Hi Rothbeau,

Not too much information to go on!!! I do not have personal experience of this drug but accessed Google where there is a mine of information to help. It would seem that you have either lung or pancreatic cancer? I hope someone comes along with personal experience for you.

Best wishes with your treatment and recovery. Rodis.

Hi there - what trial are you on for Tarceva? Where are you in the UK on the NHS? How are you coping with it?

Have you seen this great website - very informative about Tarceva:

http://www.lc-action4life.co.uk/

The reason I ask is:
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!!

Hope you're doing well!

Hello. I live in the US..and have been taking Tarceva as a first line treatment since March, 2007. I was diagnosed on 11/06 with stage 4 lung cancer which had spread to my brain. (3 lrg tumors)

I was almost completely asymptomatic, which explains why diagnosed at such a late stage. (I had experienced extreme fatigue, but 2 different docs missed the diagnosis.)

My experience with Tarceva has been great..Yes, I did have the tarceva rash...but I'll take bumps and pimples over death any day! The rash went away over time...I still get a few pimples here and there...but not too bad.

According to current research, Tarceva seems to work against tumors that over-express EGFR. There is a test for this..although I do not know if they do that in the UK.

One thing I did to help myself was exercise (light to moderate) and eat a very good diet. (well, most of the time)

I have survived VERY well for almost 3 years now..and the doctors originally gave me 2 to 6 months.

Note; I had a craniotomy to remove the tumors in my brain...as well as Gamma Knife to the ones that could not be surgically removed. I had IMRT (radiation) to the tumor in my lung.

My quality of life is outstanding! In fact, it's even better than before I got cancer because now i feel great from my new exercise and dieting plan!

I hope your experience will be as good as mine..Dont give up or give in! Get up and get active...take an agressive stance on fighting your cancer by eating well and exercising, walking, whatever. ( just start out slow, and dont over do it) ...and DONT believe the statistics whatever you do.

Good luck and God Bless!

Vicki

Rothbeau,

I read another one of your posts describing your symptoms...and I'm sorry, but not surprised to hear they have returned. I noticed you are still on steroids, which makes it that much harder for you seeing as how steroids cause thinning of the skin and longer wound healing! I hope the doctors are keeping a close eye on your eye pain & coughing..as those 2 symptoms can be indicative of very serious conditions.

You probably already have this, but in case you dont, here is a link to the official Tarceva website which lists all the precautions, side effects, etc...

http://www.gene.com/gene/products/information/pdf/tarceva-prescribing.pdf

Take care and best wishes to you...

Vicki

My wife just started her third month of Tarceva after failing Carboplatin/Permatrexed chemo. for NSCLCat 3b. Chemo was VERY hard for her. ( She was diagnosed last April.) The GOOD NEWS - its been in short supply since the spring - is that she is visibly better and reporting feeling better. The X-ray indicated the cancer much less clearly, the scanner will tell us more but that has not yet happened. For a while at lease I have my cheerful wife back. Its great!

Side effects? Well the first two weeks were quite hard but then it got easier. She still has dry and itchy skin, and some evenings there are several abrupt visits to the loo. She is loosing some hair, but currently she is the only one to notice. She has a good appetite and is working hard to keep fit.

So if you get the chance don't give up in the first few days.

I just hope to report it only gets better.