Mayo Clinic Connect
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?
Liked by Merry, Volunteer Mentor
@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….
Liked by Kanaaz Pereira, Connect Moderator
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.
Liked by Kanaaz Pereira, Connect Moderator, Merry, Volunteer Mentor
@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?
Liked by Colleen Young, Connect Director
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.
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.
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