Afatinib side effects - 1289682

kelybe
Posts:15

Two weeks ago I started 40 mg of Gilotrig after a stint on Tarceva. At first I thought I developed hoarseness, but simply had caught a bad cold. As I felt better from the cold, however, it seemed I noticed my Gilotrif side effects more. I had to go to the oncology infusion center for fluids and take tincture of opium to treat uncotrollable diarrhea when massive doses of Immodium didn't touch it. Then, all my mucous membranes became cracked and bleeding--nose and corner of my mouth split. Finally, and most concerning, my eyelids have been red swollen and incredibly painful. They are somewhat crusty and scaly and have styes, pustules along the lash line that are similar to the rash I've developed in a very mild form elsewhere on my face. My eyes are so itchy and sore, but aside from warm compresses and benadryl, the on call doctor has no recommendations for me.
I've seen very little about eyelid reactions to this medication and am wondering how common it is. I'm also concerned because while I had some discomfort and diarrhea on the Tarceva it was completely tolerable and manageable and I have been absolutely miserable since all this has started. When I was given the IV fluids and tincture of opium a few days ago the PA said the doctor needed convincing to allow me even a few days off of the Gilotrif while they were treating the diarrhea and she is not considering reducing the dosage. However, I can't function or leave the house. I'm wondering if returning to the Tarceva might be a better option. I was on 100 mg due to acid reflux and hair loss. It looks like there might have been some development of lung nodules while I was on it which is concerning, but the dr's reasoning for switching me to Gilotrif was she thought I'd tolerate it better. It's true I have no acid reflux but I'd gladly take that and shave my own head instead of suffering how I currently am. Thanks for any help.

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catdander
Posts:

Hi kelybe,

Im so sorry. How awful you must be feeling. I think you've answered your own question. If you're not able to function on gilotrif it's probably better to change treatment. Eye irritation isn't that uncommon, it's been a topic of conversation on the boards a while back when tarceva was new. Gilorif's side effect profile is definitely worse than tarceva. Moving back would be an appropriate move in a case like your's.
With drugs like EGFR TKIs efficacy is more than either/or. Often times TKIs will work well for a time then start to fail; some slow progressing spots but mostly keeping everything else under control. Like our onc faculty are known to say, bad breaks are better than no breaks. Meaning If tarceva is keeping your cancer under control, mostly then it's a good idea to stay the coarse and get as much out of it as possible. As a matter of fact there are now a growing amount of data showing that local treatment for one or three progressing spots in a case like this gives better survival than moving on to another treatment. Here is a link to our blog posts and videos on the subject known as oligoprogression. http://cancergrace.org/search-results?q=oligoprogression

I hope you are back to your old new norm soon.
All best,
Janine