I'm to c oncologist oz to decide weather I accept chemo or tarceva as any one bin on tarceva and what side effects are there please help....

[Sheeni27]

This is 2nd time the scanner has spread but only to both lungs as spots

[jujuju]

Hi I have been on Tarceva since august last year.Prior to that I had surgery and chemo....cisplatin and pemetrexed but it either was still in my chest wall or had returned there.The side effects for me have been manageable.The rash at first can be quite bad but for me it didn't last too long and while I get reoccurences sometimes its not too bad and doesn't last long so I call them pop up side effects.This is all just my own personal experience. The runs is another but I have also found that manageable and comes and goes. I cover myself in doublebase gel morning and night as my skin has dries out tremendously. My hair has stopped growing more or less and I had it cut short right at the beginning as it was a mess after chemo.It is also very wiry and curly now and black although I bleached it in January and the ends are white! Sometimes I get sores in myy mouth but again very short lived and plenty of stuff from the hospital to treat it with. Fungal infections are common but again very treatable with clotrimazole and short lived.My nails are very brittle.So loads of things but for me all ok to live with.I still work and just back from 2 weeks in sharm el sheikh. Oh and the sun isn't brilliant for the rash,but I am not too bad with it now.I use factor 50+ on my face neck and exposed bits every day in the summer and last year I went to Turkey 3 weeks after starting Tarceva (been booked a year) and although I wore a hat and sat in the shade and used factor 50 I still got a really bad reaction like eczema.Again as soon as I was back I saw my gp and got various creams from her and it was gone in no time. This time in sharm I was ok,still sat in the shade but got a tan and no bad effects.Compared to chemo for me its a walk in the park!I am doing the race for life in 3 weeks...couldn't do it on chemo.I would give tarceva a try.If you don't like it you can always stop and have chemo.We are very lucky to get Tarceva....lots of people cant get it. Long may it hold mine at bay.......next stop for me is doxetaxel...ugh.Best wishes .Julie x

[davidrwarren]

My wife was on Tarceva from August to February when it suddenly stopped working - noticed by rapid return of original symptoms of cough, loss of appetite and severe lethargy/tiredness.

Side effects were the rash on face, head and slightly on back - controlled by twice daily covering with E95 cream, tendency to get mouth ulcers. and eyelashes growing out of control!

During the 5 months that it was working she was virtually symptom free and we went on walking holidays (before and today she cannot cross the room without oxygen) and lived absolutely normal lives.

We were shocked when it stopped working so soon as the original prescribing oncologist had suggested years - but we have since seen literature which suggests that for some types of EGFR mutation tumours the working expectancy of erlotnib is between 10 and 14 months.

[Sheeni27]

Thank you so much for advise I'm to start tarceva tomorrow, bin given body wash, diprobase to keep skin moist and loperide if I get runs, urghh oncologist said today if I feel ok I can return to work I'm to c him in 2 weeks time then he wants to c me every month so fingers crossed that the tablets work, I was tested negative before I had surgery in 2011 but oncologist said in some cases it can work so I knew I had to give them a try before goin down the path of more chemo also he said he would look into a trial that is goin on at St James in Leeds so that makes me feel better, so good luck to each and every one, stay strong and positive...

[Sheeni27]

Hi everyone , well today is the day I've started on tarceva, I'm hoping to go back to work and just take things one day at a time, can anyone tell me at what stage do side effects kick in just so I can manage my working days all advice would be much appreciated...

[frank7286 in reply to Sheeni27]

hi yep on the tarceva pill, big dos have it at least 2hours after food and whatch for pimple type rash get on top of this fast as its real the worst side affect ,always carry pill to fix up the runs don;t be sigh with using the 2to3 take a pill, i found i needed to eat very plain food,nothing high fibre ,drink whatever you can as much as you can ,i;m still working full days plus 1 to2 hours o/t every day (i got a great boss he's very understanding of my illness) but thier are days you will go flat these days are better spent at home sleeping and charging the body up , we all get the same side effects you just need to get i front of them and most of the coming years will be good , you adjust to it let us know how your going some my have some tips or you my have some ,live life and enjoy.

frank .

ps im from victoria australia do we have more aussie at this site?

[LorraineD Partner Roy Castle]

Hope your treatment works well for you Sheeni, keep us posted.

David sorry that the 5 months benefit did not last longer for your wife, hope that you are coping with the change and the oncologist is looking at any other treatment that might be beneficial.

Julie, thanks for sharing your experience. We appreciate your posts and updates, really helpful to newbies to tarceva.

best wishes

Lorraine

on behalf of the Information & Support team