Brain Mets and LC after 3 years on Xalkori (ROS-1) - 1267600

neilb
Posts:84

I've been on Xalkori with great results for 3 years. Last week, slurred speech and wobbly gait precipitated testing that showed brain mets in cerebellum and cancer in the spinal column (LC, right?). I'm being treated with whole brain radiation and have meeting with oncologist to discuss whether next generation ROS-1 inhibitor might be helpful. Any other thoughts on what to consider in this admittedly challenging situation? Not EGFR-positive so pulsed tarceva seems out.--Neil

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Reply # - December 16, 2014, 07:03 PM

Dr West
Posts: 4735

I'm sorry to hear that, Neil. This is a complete unknown at this time. We don't know what might work for leptomeningeal carcinomatosis outside of EGFR mutation-positive disease. We've never seen any work with "pulsed Xalkori", so that's totally speculative. My limited experience and what I've learned about patients with acquired resistance to XALKORI for ROS-1 positive NSCLC is that second generation ALK inhibitors, which seem to have some activity for brain metastases in ALK-positive NSCLC, aren't necessarily effective for ROS-1 positive disease.

I wish I had a good answer to suggest. I hope you'll let us know what Dr. Socinski suggests.

Good luck.

-Dr. West

Reply # - December 16, 2014, 07:04 PM

JimC
Posts: 2753

Hi Neil,

Dr. West replied while I was typing this, but here are my thoughts for what they're worth.

I am sorry to hear of your symptoms and recurrence. One question I have is whether your testing revealed in the fluid surrounding the spinal cord or in the bones of the spine. Since the cerebellum plays a role in motor control, your symptoms could be attributable to the lesions in that area without the presence of LC. I would think that if your symptoms improve with WBR that would tend to indicate that they were caused by those lesions.

Also, your signature indicates that on two occasions you had a complete response to Alimta, so perhaps it would be possible to return to it once again.

Please know that our thoughts are with you and that we hope that WBR is effective without causing you much difficulty.

JimC
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Reply # - December 16, 2014, 07:28 PM

neilb
Posts: 84

Jim: Yes, there are cancer cells in the spinal fluid.
Dr. West: The "team" in the hospital floated all sorts of possibilities, most of which were shot down either by me or other team members. Neurologist started with question of EGFR mutation, hoping for pulsed Tarceva. He then went on to radiating the spinal cord, rejected firmly by radiation oncologist who rejected it as too dangerous and pointed out that I'd maxed out on radiation in some locations. Oncology team (not specialized in thoracic oncology) suggested chemo directly into spinal cord, but others pointed out lack of success in NSCLC. Today, as I was leaving, they told me I'll be seeing Dr. S. next week, and that he at least had an idea for using a second generation ROS-1 inhibitor that at least has some brain impact (though the way you tell the story is the way I've heard it, too). We'll see what he's got in mind.--Neil

Reply # - December 17, 2014, 09:14 PM

bobradinsky
Posts: 144

Neil

My thoughts and prayers are with you and your family.

Bob

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