Gilotrif/Afatinib

[Deb1516]

52 years old and have stage 4 lung cancer. I am EGFR positive and have been taking gilotrif/ Afatinib for almost 2 months now. I was wondering if there is anyone out there on this drug and is it working? I will have scans again on the 17th. Of this month. I try and stay positive.

[scifiknitter Blogger]

Deb,

I was a Tarceva person (now on Tagrisso), so don't have any info from my own situation, but know several people for whom Gilotrif/afatinib has worked well. Do you have any feedback from your own body as to whether it is working? Perhaps a cough has gone away, for example. If you are feeling better than you were 2 months ago (other than those pesky side effects), you will probably be happy with your scan results. You will know next week!

By the way, we are scan sisters, I am having my 3-month scans on the 16th. I'm also trying to stay positive.

Anita

[Ldk1 in reply to scifiknitter]

When you say pesky side effects are you referring to daily diarrhea and nausea then swings of constipation. Just wondering if everyone has diarrhea and or multiple bowel movements per day.

[Juse47542 in reply to Ldk1]

Yes and they are pesky!

[Dterwill in reply to Ldk1]

Oh yeah!!!! Just one more PITA of this horrible disease!!! Prayers coming your way!!!

[Robinh1]

I have been on afatinib since the end of Nov. I've had 2 sets of scans since then and they have both been great. Tremendous shrinkage of all tumors. For me it is a miracle drug.

[Teriken]

Hi, I am 52 also with Stage 1V NSLC, EGFR mutation. I was diagnosed August, 2015. I took Afatinib for 10 months after learning of mutation. I had tremendous results, then progression, and I am on next generation. If you have any questions or want to talk about, please respond, I assume you were recently diagnosed. Teri

[Ldk1 in reply to Teriken]

Hi, we also have. This gene mutation and are taking Iressa. 250 mg per day. Side effects have been bad with constant diarrhea and then bouts of constipation. Had to stop for ten days because of r tremendous dehydration from constant diarrhea. Going for scan next week.

How did you handle the side effects?

[Ldk1 in reply to Teriken]

Can you tell me how you handled the diarrhea nausea constipation? We were hospitalized when could not have a bowel movement.

Does the amount of diarrhea decrease as time goes on?

[Esthersm]

I'm 76 yr old , just survive 5 yrs stage 4 NSCLC , EGFR, on Tarceva ( still on Tarceva 100 mg, 150 mg X 3 yr ), had craniotomy , tumor removal Cyberknife, recurrence brain tumor last Nov , again Cyberknife. Ct all stable , just waiting for the 2nd post MRI brain Cyberknife In May to make sure the Cyberknife brain is working. So there is hope , just live one day at a time , do whatever you please & do your bucket lists. God bless & peace😍

[Ldk1 in reply to Esthersm]

Wow! Who is your doctor? What state do you live in?

[Ldk1]

Yes we have this gene mutation and we are at stage IV and taking IRESSA 250 mg per day for 60 days. We have appt next week to go for scan.

Very difficult on this drug. Heavy diarrhea and nausea then swings into constipation then have to take laxitives. It has been hard to manage.

Do you have these side effects also and what do you take to help?

[FtB_Peggy]

Hi everyone,

For some suggestions on handling side effects take a peek: freetobreathe.org/lung-canc...

Good luck!