Need for base line ct or mri of brain - 1253212

tjames
Posts:22

I was diagnosed with stage IV NSCLC in November. I do have the ALK mutation and I am on Xalkori. At the time of my initial diagnosis. I did have a chest CT without contrast, followed by a pet scan. However, I have never had any imaging of the brain. Even though I have no symptoms that are suggestive of mets to the brain, should I insist upon some type of a brain image at this point.

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Reply # - January 31, 2013, 10:57 AM

catdander
Posts:

Hello tjames, Your name sounds familiar so I don't think I should welcome you as a first time poster, so welcome here and glad you're asking.

I'm not a doctor so I'll ask a doctor to comment. You should hear back within a day.

edited out an incorrect statement.

All best on Xalkori
Janine
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Reply # - January 31, 2013, 07:20 PM

Dr West
Posts: 4735

Brain imaging is typically part of the workup for a newly diagnosed lung cancer, since brain metastases are not uncommon and can definitely been seen even in asymptomatic patients. Though we never want to find them, it's helpful to detect them when small and solitary, rather than because several large ones are present and lead to a seizure as the first sign of brain involvement. It also tends to be helpful to have a good sense of the full extent of disease at baseline, so that if brain metastases become apparent later, you don't have to guess whether they were there previously or not.

Incidentally, it's not rare for patients with an ALK rearrangement to develop brain metastases while otherwise demonstrating excellent ongoing control of their disease everywhere outside of the brain. In that setting, because XALKORI (crizotinib) doesn't penetrate into the brain well at all, it really isn't considered that the brain disease is resistant to treatment and that the XALKORI has failed, but rather that the brain is a "sanctuary site" in which disease can be protected from effective treatment. In such cases, many experts would favor treating the disease in the brain with local therapy like radiation but continuing XALKORI treatment to control the "extracranial" disease everywhere else.

For these reasons, I would say that most people favor doing brain imaging as part of the initial staging, even if it's hard to consider it a mandate.

Good luck.

-Dr. West

Reply # - February 1, 2013, 10:34 AM

catdander
Posts:

tjames, In my previous post I should have left it at, "I'm not a doctor", however I did edit out my statement so no one will get the wrong info.

I received an email from Dr. Anne Tsao, MD who is not in her office and receiving only spotty internet reception. However she left a comment to your post which states,

"...I would have a baseline staging head imaging. If they had this (even before xalkori) already, there is no need to reimage. I would only reimage if they have neurologic symptoms. Hope this helps - AST"

Reply # - February 25, 2013, 08:11 AM

tjames
Posts: 22

I did just have a brain mri, which showed 2 tiny areas, less than 7mm each, fwhich are apparently brain mets. I will be talking to a nerurosuregeon about having these treated by gamma knife or cyberknife. However, my onclolgist says that because of the small size, we could just watch these and take action it they gety bigger. He also stated that it is not certain whether Xalkori penetrates the brain or not, and there may be a possibility that the Xalkori that I am on will be helpful.

My inclination is to have these treated with the gamma or cyberknife, but I am not sure.Comments would be appreciated.

Terry

Reply # - February 25, 2013, 09:58 AM

certain spring
Posts: 762

Sorry about the MRI. Even though they're minuscule, nobody wants to hear anything like that. You sound very calm and rational which is great and will help you in deciding what to do.
I notice Dr West commented higher up your thread (Jan 31 7.20pm) - that Xalkori doesn't penetrate well into the brain. He wrote an interesting post discussing the idea of the brain as a "sanctuary site" that is hard to reach with targeted therapies (but can be reached by radiation):
http://cancergrace.org/lung/2012/06/09/ar-local-rx/
Obviously it is a highly personal decision, but since you invite comments I wouldn't, myself, want to wait and see what happens.

Reply # - February 25, 2013, 11:35 AM

laya d.
Posts: 714

Hi tjames:

I just wanted to wish you the best of luck with your anticipated targeted radition therapy to the brain. . .and also to let you know that my Mom underwent gamma knife to tiny brain mets on two separate occassions - - and really did not experience any major side-effects from the treatment (other than a sore head for a few days in the area where they had screwed the head-gear on). I know every patient is different, but the gamma knife treatment resolved the tiny mets that she had (and she had no recurrence).

Anyway, just wanted to share this with you...

Good Luck!
Laya

Reply # - February 25, 2013, 08:24 PM

Dr West
Posts: 4735

We haven't had a lot of success with XALKORI leading to responses of brain metastases, but it's also true that a couple of very tiny brain metastases are not likely to lead to any imminent problems. It would be very reasonable to pursue stereotactic radiosurgery (SRS) now or jump in as needed if there is progression on repeat monitoring scans.

Good luck.

-Dr. West

Reply # - March 6, 2013, 07:07 AM

tjames
Posts: 22

Just an update. I am scheduled to have a gamma knife procedure in a week. The neurosurgeon that I spoke with does both gamma knife and cyber knife, but recommended the gamma knife because only one session is needed. He thinks I am an ideal candidate.

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