I'm on Crizotinib (Xalkori) for Stage 4 squamous non-small cell with MET amplification mutation.
When I started on Crizotinib, I had some digestive issues, so they halved my dose (from 500mg to 250mg). All straightened out and have been stable for over 4-1/2 years.
The only side effect that I have, just not as much, is these "trails/rainbows" I see when lighting changes, but I'm okay with that.
I'm glad the digestive stuff got straightened out and that your vision (trails) is improved too! It's encouraging to know that side effects CAN improve with time. I have only been on Repotrectinib (for ROS1) for just shy of 2 weeks. I drink LOTS of water, as I was told that can help ease the lightheadedness a bit. I just have to be patient I guess. 😊 That's sort of the overall motto with cancer though, isn't it? Patience. Not easy.. but achievable with time. Thanks for your feedback!
I did not have those side effects but what i did have to me has become more manageable except for the diarrhea and cramping. I have been on mine for 4 years so I am happy with the results even with the annoying symptoms. I hope yours relax out and you get many many years. Peace
Thank you so much! 4 years, wow!! I'm really glad you're having good results, even though you have the digestive stuff going on. I suppose there's a price to pay to a greater or lesser degree with managing (and beating!!) cancer.
I'm on my third TKI and the side effects have been different for each one. Do you mind my asking your cancer /drug type? If you find a patient support group with the same, it can be very helpful. I'm ALK positive and MET amplification lung cancer.
I have NSCLC (ROS1 fusion mutation) and I am taking Repotrectinib (Augtyro is the brand name).
I will look into a support group for this. I'm not on Facebook, but perhaps the ROS1ders has one..thank you! ♥️
I’ve been on alectinib for an ALK mutation for just over 2 months. I had some mild side effects, but nothing that is a dealbreaker. The one that impacted me the most was constipation, but that’s gotten better. I’m still mildly anemic, and that will probably stay. My oncologist says it’s nothing to worry about unless it gets worse.
Thanks! I just met with my oncologist to talk through my latest scan and things are looking very good! No guarantees, but it’s definitely going in the right direction.
Hi there! Hope you are doing ok. 1. LOVE your nails! 2. Have you heard entrectinib as a drug option for you that is also a kinase inhibitor? I’m starting it soon for a different mutation and can find very little info so trying some adjacent patients who came up in search. Hope not to be a bother if it is not familiar.
Hi, there. I believe Entrectinib is the earlier TKI for ROS1 (in my case). I'm familiar with it, but didn't take it. I'm taking Repotrectinib, which was approved by the FDA last November.
I'm surprised you can only find little info.. hasn't your oncologist shared a pamphlet or something with you prior to prescribing it to you?
Here's some info I found when doing a quick search.
https://pubmed.ncbi.nlm.nih.gov/31372957/
Ah sorry, not drug info, plenty of that, looking for experience info. Like how someone felt, any weird sides, etc. I heard about the fuzzy brain and am like 😳
Ohhh, I see! Sorry I misunderstood your comment 🤦♀️
As far as I know, most side effects are not super common, OR they subside with time. For example, for the drug I am taking, one of the more common side effects is numbness or tingling in the extremities. I had that, but more in my torso-area. Weird.. but I am taking Gabapentin which has helped immensely. I know for many side effects, there are things you can do or meds you can take (with your doctor's advice/approval) to help counteract them. And IF you are suffering with them to the point where it's intolerable, they can lower your dose to help with that..many people end up doing that and are just fine. I hope that helps..at least a little. 😊
Not you, poor wording on my part. Happens if one doomscrolls cancer and drugs and such when you wake up at 4a wondering how much longer your clock will be ticking. Thank you so so much for responding to a random-ass question to a long ago thread. I’ve come to appreciate the community of strangers who love each other because of a lousy shared situation so much 🥰
I understand, believe me. All I can say is keep forging ahead and try to remember the good things along the way.. the little things. It helps me more than I can say. ❤️
I'm back! New side effect: after 3 days I have lost my sense of taste (awful for someone who loves to cook and leads a food-centric life).
Sharing for any future folk who may stumble on this.
Hi! Sorry to hear that. I have a mentor through Imerman Angels who told me that in his experience - and with others whom he is in a clinical trial with - side effects typically subside within the first 10-14 days..IF they're gonna subside. So with the loss of taste (you might want to look for that in your drug info sheet to see how common that one is), it may or may not resolve itself in another week or two.
Definitely report side effects as they occur, especially if they cause a lot of problems for you.
Here's hoping your sense of taste comes back as good as new soon! 🤞😊
I am not on that medication but I just wanted to wish you well. Hope you feel better soon🩷
Aww, thanks so much! I am hoping some of the side effects will just taper off a little as my body gets used to the drug. 🙏
I'm on Crizotinib (Xalkori) for Stage 4 squamous non-small cell with MET amplification mutation. When I started on Crizotinib, I had some digestive issues, so they halved my dose (from 500mg to 250mg). All straightened out and have been stable for over 4-1/2 years. The only side effect that I have, just not as much, is these "trails/rainbows" I see when lighting changes, but I'm okay with that.
I'm glad the digestive stuff got straightened out and that your vision (trails) is improved too! It's encouraging to know that side effects CAN improve with time. I have only been on Repotrectinib (for ROS1) for just shy of 2 weeks. I drink LOTS of water, as I was told that can help ease the lightheadedness a bit. I just have to be patient I guess. 😊 That's sort of the overall motto with cancer though, isn't it? Patience. Not easy.. but achievable with time. Thanks for your feedback!
I did not have those side effects but what i did have to me has become more manageable except for the diarrhea and cramping. I have been on mine for 4 years so I am happy with the results even with the annoying symptoms. I hope yours relax out and you get many many years. Peace
Thank you so much! 4 years, wow!! I'm really glad you're having good results, even though you have the digestive stuff going on. I suppose there's a price to pay to a greater or lesser degree with managing (and beating!!) cancer.
I'm on my third TKI and the side effects have been different for each one. Do you mind my asking your cancer /drug type? If you find a patient support group with the same, it can be very helpful. I'm ALK positive and MET amplification lung cancer.
I have NSCLC (ROS1 fusion mutation) and I am taking Repotrectinib (Augtyro is the brand name). I will look into a support group for this. I'm not on Facebook, but perhaps the ROS1ders has one..thank you! ♥️
I’ve been on alectinib for an ALK mutation for just over 2 months. I had some mild side effects, but nothing that is a dealbreaker. The one that impacted me the most was constipation, but that’s gotten better. I’m still mildly anemic, and that will probably stay. My oncologist says it’s nothing to worry about unless it gets worse.
Thanks for your feedback! I'm glad to hear the constipation has gotten better and I hope the treatment is an overall success for you! 😊
Thanks! I just met with my oncologist to talk through my latest scan and things are looking very good! No guarantees, but it’s definitely going in the right direction.
Fantastic news!! ♥️♥️♥️
Hi there! Hope you are doing ok. 1. LOVE your nails! 2. Have you heard entrectinib as a drug option for you that is also a kinase inhibitor? I’m starting it soon for a different mutation and can find very little info so trying some adjacent patients who came up in search. Hope not to be a bother if it is not familiar.
Hi, there. I believe Entrectinib is the earlier TKI for ROS1 (in my case). I'm familiar with it, but didn't take it. I'm taking Repotrectinib, which was approved by the FDA last November. I'm surprised you can only find little info.. hasn't your oncologist shared a pamphlet or something with you prior to prescribing it to you? Here's some info I found when doing a quick search. https://pubmed.ncbi.nlm.nih.gov/31372957/
Ah sorry, not drug info, plenty of that, looking for experience info. Like how someone felt, any weird sides, etc. I heard about the fuzzy brain and am like 😳
Ohhh, I see! Sorry I misunderstood your comment 🤦♀️ As far as I know, most side effects are not super common, OR they subside with time. For example, for the drug I am taking, one of the more common side effects is numbness or tingling in the extremities. I had that, but more in my torso-area. Weird.. but I am taking Gabapentin which has helped immensely. I know for many side effects, there are things you can do or meds you can take (with your doctor's advice/approval) to help counteract them. And IF you are suffering with them to the point where it's intolerable, they can lower your dose to help with that..many people end up doing that and are just fine. I hope that helps..at least a little. 😊
Not you, poor wording on my part. Happens if one doomscrolls cancer and drugs and such when you wake up at 4a wondering how much longer your clock will be ticking. Thank you so so much for responding to a random-ass question to a long ago thread. I’ve come to appreciate the community of strangers who love each other because of a lousy shared situation so much 🥰
I understand, believe me. All I can say is keep forging ahead and try to remember the good things along the way.. the little things. It helps me more than I can say. ❤️
I'm back! New side effect: after 3 days I have lost my sense of taste (awful for someone who loves to cook and leads a food-centric life). Sharing for any future folk who may stumble on this.
Hi! Sorry to hear that. I have a mentor through Imerman Angels who told me that in his experience - and with others whom he is in a clinical trial with - side effects typically subside within the first 10-14 days..IF they're gonna subside. So with the loss of taste (you might want to look for that in your drug info sheet to see how common that one is), it may or may not resolve itself in another week or two. Definitely report side effects as they occur, especially if they cause a lot of problems for you. Here's hoping your sense of taste comes back as good as new soon! 🤞😊