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I’m getting switched off of Keytruda and Alimta to targeted therapy Crizotinib. Does anyone have any experience with this? Side effects? Success/failure? I’m told I have few options available.
Hi @2onlow8 here is some more information on crizotinib (Xalkori) https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/crizotinib
What has your doctor told you about this?
@2onlow8 did you start Crizotinib (Xalkori)? How are you doing?
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Still working on financing extremely costly copay. Hope to start it first week in December. Stopped Keytruda and Alimta last week as they are no longer working.
I was on Carboplatin and Altima… was on the combo for 5 infustions… tumors were shrinking. then they kept me on only the Altima for 7 more infusions… the tumors were still shrinking… I just found out the chemo stopped working and the tumors are growing again and few more are appearing…however…I guess they are very small… I had my first infusion of immuno therapy of nivolumab… AKA: Optivo… a few weeks ago… hope it is going to work… even though I am not doing the same drugs… I thought I would add some insight into my therapies to maybe share drug info… hope your new therapy works well for you….
And I, as well, hope your new treatment is effective. I start Crizotinib the first week in December. Since side effects may be disabling, my dr and I agreed it best to start after I return from a business trip to England at the end of this month. So I’m off all treatment now these past 5 weeks, for the first time since my adventure began almost 2 years ago. Sure wish my eyes and nose would stop running already!
Well hope the business trip goes well… that is kind of scary being off all meds… will they do another scan to see what being off all treatment does? or will they just start with the Crizotinib? Hope everything works out for you…. it is a sucky journey to be on for sure… I have my days …
I’m sure you do! They’re not going to scan again for 2-3 months. But my CEA blood marker has accurately tracked changes to my condition that PET scans always confirm. So I’ll take criz for 2 weeks and then get bloodwork…in the meantime it’s a lovely day and I feel pretty good. Hope you do too!
Been on Xalkori for 8 weeks now after being told it’s the last drug option for my stage 4 NSCLC. So far so good. Does anyone have any experience with this drug that they can share?
@2onlow8– Good morning. It's been a while since we've spoken. How are you feeling? When you say "so far so good" what are you referring to? Bad side effects or reducing your cancer?
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.
@2onlow8– WHile we wait for someone to help with your questions about Xalkori I am wondering what you are doing to increase your lung capacity. It must be a relief to have found Xalkori. If I'm not mistaken Xalkori is a combo of chemotherapy and targeted therapy. Are you aware of some of these side effects below?
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?
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