XALKORI (crizotinib)

I’m feeling ok. Side effects are mostly quality of life issues that separately aren’t bad, but taken together make day to days challenging: excess mucus, lack of appetite, constipation, fatigue, nausea. My CEA number has been reduced by 50% since taking Xalkori, so this is great news and worth the side effects. In the 2 years since my diagnosis my bi-weekly CEA blood count has accurately been confirmed by regular ct scans taken throughout chemo, radiation, 2 different immunotherapies, so watching it drop is reason to celebrate. (Apparently most medical pros discount the CEA as a viable tool for analyzing lung cancer, but it’s always been right in my case, inexplicably.) My coughing is reduced, my wheezing is almost gone. I’m sleeping well. I’ve become hopeful once again and am actively working on improving my breathing/lung capacity and regaining some weight and muscle tone. I had a set back in early December when I picked up a lung infection while traveling which dramatically reduced my breathing, lung capacity. I couldn’t breathe lying down and had to sleep sitting up with an oxygen machine. I had to stop my walks and regular exercising. After recovering from that and starting Xalkori I’ve been doing better, but have not recovered the lung capacity I had before the trip. I’m very interested in hearing from others who have taken Xalkori.

Hello @2onlow8,

While I couldn’t find anybody directly referring to Xalkori (Crizotinib), I would like to invite @nicee @lisamb @joangma @schmeeckle64 @shortshot80 @burrkay @armstg @tock and others who’re talking about non-small cell lung cancer (NSCLC). You might also wish to view these discussions:

– stage 4 inoperative squamous nsclc now on opdivo last line tx https://connect.mayoclinic.org/discussion/stage-4-inoperative-squamous-nsclc-now-on-opdivo-last-line-tx/
– Stage IV lung cancer, what treatments work for you? https://connect.mayoclinic.org/discussion/saying-hi/
– Getting alectinib targeted therapy for stage 4 NSCLC https://connect.mayoclinic.org/discussion/alectinib-target-drug/

@2onlow8, what questions would you like to ask of your fellow members?

I am doing seated yoga and COPD breathing exercises to increase my lung capacity and weights to exercise my arms, exercise bands to move my legs.

@2onlow8- Good morning. Good for you. You seem to have everything covered. There are also a number of good exercise videos on youtube if you get bored or run out of ideas. I'd also like to invite you to a new virtual walking group on Connect.
https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
Do you get out and walk? If not there are exercises for people who can't walk outside or who need to sit in a chair. Is this something that you might be interested in?

Yes I’ll check these links out. Thanks. Results of my most recent blood work this week show no change in my CEA. That may signal that Xalkori (Crizotinib) has stopped its effectiveness. My dr has no further treatment suggestions if this is confirmed by a CAT scan next month.

@2onlow8- Oh those are words none of us want to hear, "no further treatment suggestions". Do you think that you will seek more opinions?

Regarding crizotinib (Zalkori), how much is this drug if your insurance is Medicare?

I have Medicare and AARP UHC and it would have cost me an additional $9600/mo.

@2onlow8–- Good morning. I am checking in to see how you are doing and if you have made any decisions about treatments given your last post!

I have a 2nd opinion oncologist at MD Anderson, Jacksonville, who has been very supportive of me and my local oncologist's suggestions over the past 2 years of my treatments. I'm awaiting results of a PT scan I had on Friday and he will also get those scan results so I'm sure we'll have a conversation this week.