Xalkori/How long do I have to live?

CarlW · August 2022

I was diagnosed with non-small cell lung cancer about nine months ago. After one chemo treatment, my doctor said Xalkori (crizotinib) was the best treatment for me (250 mg. twice daily). A PET scan four months ago showed very promising results compared to my initial PET scan, but a PET scan a few days ago, after four more months on Xalkori, has me very worried. Apparently the tumor in my lung has grown and there are “a few newly developed areas of FDG uptake”. This is very discouraging and makes me think there is little hope. Am I right to be discouraged? I would appreciate any comments regarding Xalkori vs. Alectinib, and also any frank comments regarding how long I have to live. I realize this cannot be predicted with any accuracy, but having even a rough estimate would help me greatly in making decisions regarding what remains of my life. My doctor is upbeat and optimistic to a fault. I need a more realistic prediction.

CarlW · August 2022

I should have also mentioned that the cancer had metastasized to my vertebra and (I think) adrenal glands.

CarlW · August 2022

Wow, thanks for all your replies! What a big help the Cancer Survivors Network is.

GeorgeK8922 · August 2022

https://csn.cancer.org/discussion/comment/1699030#Comment_1699030

Hi Carl, I'm sorry no one has replied. I wish I could help answer your question.

My mom is kind of in the same boat as you.

We found out a month ago that she (54 years) has lung cancer and it has metastasized. She has two large tumors, one against her rib in-front of her heart, and one against her spine. It has also spread to her adrenal glands.

She is in a lot of pain if she doesn't take her pain meds so she needs to take them. But the pain meds have negative side effects such as seeing things, drowsiness, constipation, and remembering things that didn't happen. She doesn't eat much because she's constipated, and so she keeps getting weaker and weaker.

Up until last week she was planning on doing chemo therapy, but she suddenly changed her mind without talking with anyone including my dad. When we've talked with her about it, her reasoning doesn't make much sense to us, but I think it is in large part due to fearing the negative side effects of chemo and just resigning herself to be bedridden and on pain meds.

If you could, could you tell me how your chemo treatment was for you and what positive and negative effects it had for you? Did your primary tumors shrink? And how long did the negative effects of chemo last for you?

Thank you for reading this.

-George

CarlW · August 2022

Hello George,

Thanks very much for answering. I had only one chemo treatment, from which I had no side effects at all, before my doctor told me that tests showed that immunotherapy was the best thing for me. So I started on Xalkori (crizotinib), and after three months, a PET scan showed, I believe, that the cancer was gone from the glands and my backbone and that the tumor in my lung had shrunk. I was quite encouraged. Then after four more months on Xalkori, another PET scan showed that the tumor had increased in size. I can't say how much because the report is filled with medical jargon that I don't understand and was written by a doctor with a poor command of the English language (I'm American, but I work overseas). I've just sent my PET scan to a company in the US for a second opinion and requested that it be written in layman's terms. My oncologist plans to switch me to Alecensa (alectinib), so she apparently does not feel that Xalkori is working. As for symptoms and side effects, I have absolutely no symptoms from the cancer. It was persistent congestion that led me to the pulmonologist who discovered the cancer, but that quickly cleared up and since my initial diagnosis I have had no symptoms at all. The side effects of Xalkori are minor--edema and trailing vision after being asleep or in a dark room which goes away after a minute or so. My doctor is, in my opinion, almost irresponsibly optimistic. She says, literally, that it is 100% sure that I will be cured. yet on the internet, I see that the five-year survival rate for people with my type of cancer is only 7%. I have a lot of important decisions to make about myself and my family. I wish someone could give me a more realistic assessment of how much time I’ve got, both with and without treatment.