stacrober2
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Posts:16
My best friend was diagnosed April 2014 with nsclc /ALK mutation. She has mets to multiple bones, lymph nodes and brain. She did 3 weeks of radiation to T12 and then started Xalkori. She developed very significant nausea, vomiting, and vertigo and then a hypoxia ? Pneumonia. We stopped the Xalkori and within 24 hours she was getting better. We fel that the hypoxia was directly related to the Xalkori. According to the Pfizer drug info Xalkori should be stopped permanently if this occurs. Is there any documentation of patients doing a low dose Xalkori after having a pneumonia event safely and how likely is she to have the same reaction to Zykadia?
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Reply # - May 28, 2014, 01:55 PM
Reply To: Pneumonia from Xalkori
Hi stacrober2, I'm so sorry to know about your best friend. It appears she's lucky to have you looking for answers. I'm not sure what the answers are or even if there's an answer. The drugs are so new. I'll ask a doctor to reply.
I hope she does well for a long time.
Janine
Reply # - May 28, 2014, 03:27 PM
Reply To: Pneumonia from Xalkori
Dear stacrober2, I am sorry to hear about your friend's ordeal. One of the rare but very serious side effects of drugs like Xalkori is something called pneumonitis, which means inflammation of the lungs. It looks and acts for all the world like pneumonia but is not from an infection, rather is a reaction to the drug. I cannot say for certain if your friend had a real pneumonitis reaction from Xalkori, and there are certainly lots of reasons why patients with lung cancer cough and get out of breath (cancer, infection, radiation, etc). In my experience pneumonitis does not usually get better in 24 hours just from stopping the drug, usually it takes longer and requires treatment with steroids, but ultimately it will be up to her doctors to look at the evidence and decide the cause.
If it is pneumonitis, though, then it is not clear if it is ever safe to try the drug again. I have seen patients die from pneumonitis, both from the first episode and when the drug was tried again "just in case", so I would be loathe to try the drug again if I was sure it was drug-induced pneumonitis. It is always terribly disappointing to patients when they have to stop a drug that gives such hope, but ultimately it is better to move to another option than to be harmed by the treatment itself.
Reply # - May 28, 2014, 07:03 PM
Reply To: Pneumonia from Xalkori
Dr. Pennell she didn't get immediately better but with every dose of the Xalkori she was getting worse. O2 says in 78to 84 at times, very disoriented and halicinating She stopped getting worse after stopping the Xalkori but it took weeks to get her O2 to stay above 90 without o2. We have been off of it for a month and she can still desat with exertion to 86 but quickly gets back to high 90' a with rest. She doesn't even remember the time she was on the Xalkori she was so sick. We are trying to figure out what the next best treatment is. The options given to us were low dose Xalkori , try Zykadia at a low dose or standard IV chemo with probable whole brain radiation due to she already has brain mets. She has been to sick and weak to travel to see other doctors.
Reply # - May 28, 2014, 08:43 PM
Reply To: Pneumonia from Xalkori
I'm afraid that there's just no right answer to this question. I would be very concerned about the potential that low-dose XALKORI could still lead her to get worse. We have no idea whether people who develop pneumonitis on XALKORI will tolerate Zykadia (ceritinib) better or have the same problem, perhaps even worse. Zykadia has only been tested in a few hundred people thus far, and it's very likely none of them had pneumonitis from XALKORI -- so we just don't know.
Chemotherapy may be the safest option, but she would need to be fit enough to tolerate it.
Good luck.
-Dr. West