Tarceva (Erlotinib)

[guellida]

Is anyone out there on Tarceva for lung adenocarcinoma? Would like to share experiences. I've been on for three months.

[clownfish]

Hi Guellida,

my husband has been on Tarceva for the last three months. It would be nice if we could share some experiences. Our Oncologist put him on 150mg and initially there were some struggles with acne, rash etc. the latest thing is a nail bed infection on his big toe. It seems that all of this plus a constantly runny nose and considerable lack of appetite is par for the course. What worries me at the moment is that he is constantly complaining about abdominal pain. No idea if this might be a side effect of the Tarceva. Our Oncologist does not seem to think so but it has to come from somewhere?

Anyway, it would be nice if you could let me know how you are faring.

Regards

Julia

[guellida in reply to clownfish]

Hi Julia,

Thanks for your reply. Sounds like your husband's acne/rash has abated. Mine has, too, to a degree but I have either extremely dry 'alligator' skin and/or the rash from the scalp to my ankles...with, fortunately, a few untouched areas! I use tons of Diprobase cream emollient but it does keep me lubricated and generally itch-free. No problems with nails, so far. This may be because the chemo nurse suggested painting them with dark nail polish to stop splitting and potential infections. May not be exactly the 'man' thing to do, but perhaps worth a try just on the toes. My appetite comes and goes a bit. When I reduced the Prednisolone (steroid) too much it definitely went way down...now on slightly higher dose and reducing dose slowly this time. I also find that as, at times, everything tastes like cardboard....bit of stomatitis...my mind turns off on the food idea. Can't help with the abdo. pain, but does he have any nausea or indigestion-like symptoms?

Enough for now, but just to say that, ignoring the side effects, I feel so much better since starting on Tarceva and scan has shown a significant shrinkage. Hope same for yours.

Best, Sue

[clownfish in reply to guellida]

Hi Sue,

the lack of appetite has been a concern for a while. My hubby is a slim thing anyway and it worries me when he does not want to eat his meals.

Well, unfortunately we have just today had a visit to both, our oncologist and the radiation oncologist where we found out that my husband now has a new tumor in the right lung. We are devastated, obviously for him, the Tarceva has NOT worked and he now has a new round of chemo (a drug called ALIMTA) we only know that it is supposed to be well tolerated and quite effective, well let's hope so. At least we can forget all about indigestion, nail infections ect.

I wish you all the best, hope you have much better results than us.

Take care.

Kind regards

Julia

[guellida in reply to clownfish]

Dear Julia,

So sorry to hear the latest news. Fingers crossed the Alimta is kindly and does the trick. You'll both be in my thoughts and prayers.

Best,

Sue

[clownfish in reply to guellida]

Dear Sue,

thank you for your kind thoughts and prayers, we surely need it. As a carer it is sometimes not easy to keep a stiff upper lip but I should not complain considering what all the cancer patients have to go through.

We are starting the new Chemo next Wednesday, will keep you posted from time to time if you like.

Take good care of yourself

warm regards,

Julia

[lenora]

Hello I have been on Tarceva for 4 months at my last scan the tumour in my lung had shrunk by 1/3 which realy cheered me up.At first I had a rash rather like German measles I have terrible flakey,itchy skin and digestive problems also ,loose bowels,aswell as nail bed infections but ii's worth putting up with all this if the Tarceva holds back the cancer and gives me longer to live.Do hope it works for you .Regards Lenora

[guellida in reply to lenora]

Hello Lenora,

Our stories sound very similar....and yes, unless really debilitating, I'm willing, too, to put up with the current side effects as long as Tarceva continues to bash the b######!! And also so thankful that I'm back to dog walking, shopping and 'potter'ing in my studio...life is almost normal!

What do you use on your skin and for your loose bowels? See my reply to clownfish about the nails....

All the best....and keep fighting

Sue

[lenora in reply to guellida]

Hello Sue,pleased to hear you are able to lead an almost normal life,I am now back to mucking out and the occasional ride on my horse,am a bit worried though as I have developed a cough and my chest feels tight,I have another scan next week ,so am praying that things haven,t become worse,I have found that Aveeno skin relief lotion a help,and I just put up with the loose bowels I have been told Imodium is o.k to take.Best wishes.

Lenora.

[guellida]

Message for Lenora...system is acting up and I can't reply directly to you, but wanted to tell you to speak with either your oncologist, chemo team nurse or GP and ask for a prescription for Loperamide (same as Imodium). Really makes a huge difference!!

Best, guellida/Sue

[lenora in reply to guellida]

Thank you,have asked for the loperamide,how are you doing ?I have recently had the results of my scan and everything is stable,I felt disappointed that there had been no further shrinkage but the oncologist said stable is good and was pleased all the best x

[janholden42 in reply to lenora]

hi lenora , i am new to these posts, i am also on tarceva 50mg i had 100mg and 150mg last year but that made me ill, so the doctor is trying lower dose, i have got loperamide to take when i need it. my ct scan shows lung stable which the oncologist said is good, im hoping my appetite isnt depleted again though. i wish you luck with the tarceva it does seem to be a very good treatment. jeanette

[Mrs-Star]

Hi, My name is Carmel. I have posted on here once before as my sister was diagnosed with lung cancer in February this year. I'm happy to say at this point in time she is doing very well and is doing a lot of natural therapies (organic alkaline diet, hyperbaric chamber, going to the gym etc) as well as still taking Tarceva. I have to say back in February she was in a totally different place.

The reason I'm posting now is for work. I work for a market research company and I have a client who are working on a tool to help lung cancer patients get the information, resources and support they need. They would like to talk to lung cancer sufferers who have the EGFR mutation or their care givers (family members /carer). They would like to do this on either 10th or 11th December either over Skype or face to face. They will pay £60 per hour and they would probably need 2 hours. If you are interested in taking part or want any further information, please email me at [e-mail].

Good luck everyone xx