marc9338 Posted July 1, 2016 Share Posted July 1, 2016 My oncologist just called with lab results. I tested positive for the ALK mutation. She was very upbeat and positive about the targeted therapy options. I am going on Crizotinib immediately. Anyone else on Crizotinib? Side effects? Success to date? God is good... Praying this med does the trick! For a long time Marc Tom Galli and RuthieThomas 2 Quote Link to comment Share on other sites More sharing options...
Cheryncp123 Posted July 1, 2016 Share Posted July 1, 2016 Marc, I am very excited to hear that you are a fellow ALKie. I have been on Xalkori (crizotinib) now for 15 months. I am stable with no signs of progression. Everyone's body reacts differently, but I can tell you the side effects that I have experienced have been minimal. In the beginning I had some visual disturbances such as flashes of light when going from a darkened room into a lighted room. If I take my medication without eating something first I will get nauseated and vomit. If I eat before taking my med I have no problem. I have had some severe bouts of diarrhea that have resolved with a probiotic. If I did not have to take my pills I seriously would not know that I have cancer. I do all the things I have ever done. I am praying that your results will be as good as mine have. God be with you. RuthieThomas 1 Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 1, 2016 Author Share Posted July 1, 2016 That's awesome... Really glad to hear of your good results! I am walking on sunshine today... Don't want cancer at all, but if I have to have it I am glad its a known mutation with available options. God is doing something BIG! Thank you for sharing... Marc Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
Cheryncp123 Posted July 1, 2016 Share Posted July 1, 2016 Exactly, Marc. There is a group on Facebook called Living with NSCLC ALK mutation that you may want to check out. Tom and Merita Carroll started it because Merita has the ALK mutation also. It is a closed group only for ALK positive patients. marc9338 1 Quote Link to comment Share on other sites More sharing options...
RuthieThomas Posted July 2, 2016 Share Posted July 2, 2016 Marc SO happy to learn of your good news! Wishing you all the best! Ruthie marc9338 1 Quote Link to comment Share on other sites More sharing options...
Cheryncp123 Posted July 4, 2016 Share Posted July 4, 2016 One thing I would like to add to the crizotinib side effects is that it lowered my pulse rate drastically, I was on a blood pressure med at the time and the two drugs didn't play well together. My oncologist took me off the blood pressure med and I have had no further problems with my BP or my pulse rate since. Just something to be aware of. Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 5, 2016 Author Share Posted July 5, 2016 Great feedback guys. Thank you for all your input. Hope to start in the next day or two and having BIG faith the meds will have a long term impact. Cheryncp123 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted July 11, 2016 Share Posted July 11, 2016 Hi, Marc, That's great news!! My uncle was diagnosed with ALK and he took Xalkori (crizotinib) for three years with very positive results. He experienced minimal side effects (his ankles swelled up quite a bit, but that didn't stop him from playing golf, going to the beach, or any of his other favorite activities). He only recently switched to Alecensa (alectinib) and is still doing very well. Here is a link to LUNGevity's guide to managing side effects: https://www.lungevity.org/support-survivorship/survivor-resource-center/living-well-with-lung-cancer/managing-treatment-side Please keep us posted! Lauren -- Digital Community Manager LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 14, 2016 Author Share Posted July 14, 2016 Thanks Lauraen... I've been on crizotinib for 4 days now. No side effects so far. Had a follow up with my Oncologist today. She continued to be optimistic and confident in the plan. Every day my eyes open is a gift from God. Marc LaurenH and Cheryncp123 2 Quote Link to comment Share on other sites More sharing options...
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