| | Joined: Mar 2014 Posts: 2 Member | OP  Member
Joined: Mar 2014 Posts: 2 | Wondering if anyone is taking Gilotref (afatinib) and if so, how are you doing? My husband tested positive to HER1 biomarker, and is now on 20 mg of this. Tried 40mg - resulting rash and staff infection so bad he had to stop. Got hooked up with excellent dermatologist who has given him 5 Rxs that have kept the rash at bay. His prognosis is terminal, but this could keep him disease progression-free for 13 months, so we're giving it a try. 7 weeks into the lower dose, he's back at work (not a desk job) 10+ hours a day -- tired and cranky, but basically, doing well. Just wondering...
Husband is patient. Diag 5/10/12 - Stage IVB.
Squamous cell carcinoma left tonsil/base of tongue.
5/30/12 starts 3 cycles of cisplatin, 5fu, taxol.
Wkly carboplatin + 35 radiation done 10/2/2012.
6/25/13 -Robotic surgery part of base of tongue removed; radical neck dissection.
12 of 15 margins were disease positive.
Took Capsol-T (green tea extract) until 11/12/13
HER2 biomarker present - 40MG Gilotref start 11/12/13; restarted at 20mg 1/20/14.
Tired, cranky, otherwise hungry, healthy.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im very sorry about your husband. It must be so difficult for everyone in the household.
What is your husbands diagnosis? Ive not heard of the medication you asked about. Is this for oral cancer or has he had a recurrence with mets to another location?
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | I'm sorry to hear about your husband, but maybe this will help you with your information request: http://en.wikipedia.org/wiki/AfatinibGood luck, Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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