My doctor is going to talk to me on my visit in early June about going on Alecensa. I have read about it and talked to pharmacist who has had people on it. My biggest concern includes eyesight, lung problems, extra fatigue and right now sun burn. I couldn't go outside pharmacist said unless I had sunscreen at least 50 on me and still could burn. He had one person who went outside for less then five minutes and burned scalped really bad. Right now I have no known cancer ( scan was clean) except for possible one in brain (had radiation on it but won't know if it worked until mid June scan). Any information would be appreciated. I am thinking of delaying starting the medication until fall for I really want to enjoy the summer. Am I crazy for wanting really wanting another sunshine summer? I live in Nebraska.
Anyone know about Alecensa?: My doctor... - Lung Cancer Support
Lung Cancer Support
Living in Wisconsin I understand your desire to enjoy the sunshine in our short summers. That sounds like an excellent question for your doctor when you see him her. I would be interested to know what the reply is.
I don't know anything about the side effects of Alecensa that you are most concerned with. I do know that it appears to be the most effective drug for ALK+ lung cancer currently available, and that it has good activity in the brain. The possible brain met is probably why your doctor is recommending it - to try to prevent any new brain mets from popping up.
People I know who are on it seem to be doing very, very well and are not complaining (to me, anyway) of difficult side effects.
I'm on an EGFR inhibitor and have learned (the hard way) how important it is to stay out of the sun. I don't rely on sunscreens much, though - I'd much rather cover up. I wear a sunhat religiously and keep my arms covered. There are lots of clothes available now that have SPF50 sun screening built into them - perhaps that could be a route to go rather than a goopy cream.
Google on SPF 50 clothing, and lots of sources will appear. Sierra Trading Post has the best prices, and other places offering such clothes include REI and LL Bean.
I agree with Jean, I live in Wisconsin too and the little bit of summer we get, we love. Good luck in June when you partner with your doctor to decide what is the next course of action. Definitely have that conversation with your doctor, maybe delaying would be fine.
Sending best wishes to you!