Brain Mets - Can we pull the threads together?

[mamacze]

Patty,
So it sounds as if you took the "take your time treating the mets without symptoms" approach ... and for good reason.
You mentioned earlier that you felt good enough to go out and get your pruning done...I know pruning can be rewarding, but is sounds like it is time for your adventure away...enjoy! (and believe me, I will be getting vicarious pleasure at the thought of your fun while I do my pruning this week!)
Love Kim from CT

[StephN]

Kim -
I have only been dealing with known brain mets since the first week of January this year.
Just finally getting a little more strength back after the debilitating effects of the steroid anti-inflammitory pills. YECH!

Like Patty, my CA27-29 has been very steady throughout this brain mets episode. I have been having CEA drawn as another check for about 2 years now, so as it edged up late last summer and fall we started checking for the cause. My PET and other scans all came out negative. Turns out my brain tumors were producing the protein that shows on the CEA. Now my CEA is down to .8 and this is a god feeling and cuts my worry down to almost nothing. Good to know what your tumor markers are BEFORE you need them followed for mets. Anyway, my med onc thinks so and I am GLAD!

BTW - Christine Druther also had her CEA checked as a matter of course and this was also an indicator for her brain mets when that marker rose above normal.

Glad to help with your questions. Without this site I would have been rather lost myself!

[mamacze]

Hi Steph,
Ugh! it seems like everyone who takes the steroids has the same blech experience...

the steady increase in your CEA interests me; as it happened to both you and Christine. I have chosen not to have markers drawn as a matter of course; ;but I will share your experience with my onc tomorrow and reconsider having the CEA drawn just to keep an eye out for brain mets. During my last visit, he said I would need to start with brain MRI's. In light of your experience, I will see about a CEA as well.

How long were you on steroids?
Love, Kim from CT

[ewaters]

hi all, having now heard from Sloan that they do not believe i am a candidate for stereotactic because there at least 5 and probably more small metastases in the brain, my own docs agree that i need whole brain radiation and say i need to do it quickly, as in the next 2 weeks, before they show up in someone place that can be dangerous. the reason for the rush is that although my original 3 spots shrank from may to july and to september, in the september MRI these new ones showed up and they think i now need to act quickly because of the sudden change even though all the new spots are under 2mm. the rest of my body has responded incredibly well to the chemo of Carbo, taxol and herceptin and my onc thinks we need to be equally aggressive with the brain. i would really appreciate hearing from anyone who has had whole brain radiation and what it was like. Just how tired were you and for how long? what are the other problems i should expect.
thanks
Beth