Anyone on Gilotrif/Afatinib?

[Tlauren]

Hi.

My mom just started a new treatment pill called Gilotrif this week. She took Targrisso and had to stop due to side effects and disease progression it didn’t help her at all. She’s done 6 rounds of chemotherapy and she recently had “moderate disease progression” after her 1 maintence chemo round.

It doesn’t seem like Gilotrif is commonly given, even the doctor said it. I was curious if anyone had been on it and how’s it’s worked.

We are prepared for the side effects.

[Eh22]

Hi. I have been on Gilotrif since 7/2016 and it’s working! First in 8/2013 I had a upper right lobectomy then the cancer came back and have been on Gilotrif. It’s the only lung cancer medication I have been on. Good Luck!

[KimGO2 Partner]

Hello Tlauren,

I am glad you reached out to us. Gilotrif is one of many of the medications that can help your mother. You may want to reach out to the ordering provider making sure your mother was retested upon progression. Sometimes the alterations in the cells make up can change. We will be glad to speak with you by phone or email. Call us at 1-800-298-2436 or email [e-mail] with any questions. We could also see if you mother might qualify for any clinical trials. Sending you and your mother hugs.

Warmly,

Kim

[Webby1rose]

Hi there

Sorry to hear that your mums diagnosis, I am on Afatanib and have been on it since August 2019 , up to that point I had 6 rounds of combined chemo and then a few cycles of maintenance until progression. I was very poorly at that time a liquid biopsy was done and we were told that I might not be around in the three weeks it took for results to come back. The results showed I was a match for EGFR exon19 that meant I could immediately start on Afatanib first scan showed reduction in lungs, mets in liver and bones together with reduction in fluid around lung it is still a palliative programme for me but I have to date an extra 7 months quite a miracle. Afatanib is a second generation TKI drug I believe.

There are some ‘interesting’ side effects the hardest one was diarrhoea so be careful to hydrate as it can be hospital critical!! I came down a dose to 30mg daily. Nail bed infections and sore mouths have to be managed. One rather nice side effect is most amazing eye lashes but take care to groom them !!! As they can grow inwards !!! Other strange hair growth I am now curly haired. But oral tablets happy days no IV .

If you mum is EGFR there is a Facebook group , worldwide so you don’t feel too alone and lots of good advice and support from other lung warriors , I wish you mum well.