Xalkori - Has anyone had any experience with this targeted therapy drug?

[2020CURE]

My sister will be prescribed Xalkori. Has anyone in this group have any experience with it?

Thanks in advance!!

Betty

[Moranj]

I was on Xalkori for 22 months. I have stage IV nsclc. The drug immediately relieved my back pain. It reduced my tumor by 50%. The median is 18 months but I stayed on for 22 months. I had mild progression. The tumor came back but I have a good quality of life. The one side effect I had was diarrhea. The good news is there is another targeted therapy (second line) called Alecensa. I started it about a month ago so far so good!!

There is hope to live a good and productive life with the medications out there for us. Just need to keep the research rolling!!!

Jim

[Msp1 in reply to Moranj]

I was on Xalkori for 38mos. for MET mutation. Diarrhea was an issue, best controlled with diet (I consulted a nutritionist), gastric reflux and gastritis, controlled with meds, you can have visual effects that are not harmful, and I did end up with neuropathy. I found it pretty tolerable. It was a nice run until progression; there is no second generation for MET mutation. Best wishes

[2020CURE in reply to Msp1]

Thank you so much for sharing, it is greatly appreciated! All the best to you too.

[2020CURE in reply to Moranj]

Thank you Jim for sharing. Wishing you continued health!

Betty

[2020CURE in reply to Moranj]

Jim, my sister is 85 but has been in good health until now. I keep telling her that her age is not an issue and should not interfere with her. Thanks again!

Betty

[Ncpoet]

I was on Xalkori for 7 months and it was positive for decreasing size of my tumor but I did have a rare serious side effect and had to stop taking it.

I can’t totally blame Xalkori since I was on two other drugs for Sjogren’s Syndrome that had same rare side effect. So the three drugs together caused a prolonged QT wave in my heart which did cause me to go into cardiac arrest. I had fallen due to fainting and was at hospital for broken ankle when this happened. I went off the other two drugs and switched to Zykadia for five months and my doctor closely monitored my heart.

I believe these two drugs did stop the growth of my cancer and after a year of Alimta as a maintenance, I was in remission, with only scar tissue showing.

I was diagnosed in 2013 and have been in remission since late 2016. I liked the convenience of taking it at home. There were some issues with diarrhea but nothing extreme.

If your sister has any heart issues she should be monitored closely while on this medication, but otherwise, I say go for it.

Praying all goes well for her. I am in my 70’s. I had stage 4 nsclc.

Judy

[2020CURE in reply to Ncpoet]

Thank you Ncpoet. So appreciated!!

[GailO]

I’ve been on Xalkori for 20 months. The first few were challenging. I was constipated (instead of diarrhea). Diet has helped. The worst was that it made what I ate taste terrible. Anything that was slightly sweet was awful. (Even soup that contained tomatoes.) I lost weight but hung in there eating lots of bland food. It also upset my stomach to the point that I often got sick to my stomach. I had been taking Tagamet for silent reflux, so my doc suggested I take one before breakfast and again before my evening meal. That did the trick. I also make sure that I have eaten some good fat like avocado or almond butter. Oh, my oncologist also reduced my dosage to 200mg. That helped as well.

Best of luck to you.

[2020CURE in reply to GailO]

Thank you GailO for your feedback - so appreciated! Be well!

Betty

[Cab1956]

I was diagnosed June 2015 with stage iv lung cancer with the ALK mutation. I also had stomach issues but about 3 months after starting the Xalkori the tumors in my lungs had gotten much smaller and then they were actually gone showing no evidence of disease. The Xalkori worked for 24 months for me then I had four lesions that showed up on my brain. I have been taking Alecensa now for 6 months and 3 of the 4 lesions are gone. The one that is left has not progressed. Best wishes to your sister!

[2020CURE in reply to Cab1956]

Thank you for sharing and glad that the medication has been effective! Wishing you continued healing! Betty

[FtB_Peggy]

Good morning! Thank you, everyone for sharing your personal stories with Betty - you are the best!

[2020CURE in reply to FtB_Peggy]

Definitely a great group!