May 17, 2011

Brain mets

Possibly one of the scariest things a patient can hear (after "You have cancer" and before "There's nothing else we can do for you") are the words brain metastases.

Last week's brain MRI showed three lesions in my right cerebellum. They don't behave definitively like cancer, but as the radiologist who read the scan said to Dr G, what else could they be?

So the feeling stupid, making typos and feeling not-quite-vertigo were worth reporting and not related solely to starting the new chemo combo or tapering off the antidepressant (which it looks like I will need to start again anyway).

It's going to take me some time to wrap my head around this news. Here are the brief things I know so far:

1) I will see my radiation oncologist, Stephen Eulau, to get his opinion on whether or not I should have cyber knife or gamma knife treatments. Since these are about $80,000 per lesion, and I have three lesions, the insurance company may not cover the procedure, which Swedish does perform (cyber knife).

2) Dr G is against whole brain radiation, which he says will leave me feeling much more stupid, and prone to make many more typing errors, than I feel now.

3) I will continue on the Abraxane for one more week, and next week's labs will also test a sample of CA 27.29, my tumor marker. If the tumor marker shows a decline, then we might continue the Abraxane/Avastin combo. If it continues to go up, then Dr G will consider changing to Xeloda, an oral chemotherapy which he believes is more proven to cross the blood/brain barrier.

The active drug in Xeloda, 5 FU, is the one that put me in the hospital in 2009 with severe infections. However, if I'm monitored more closely, and given a lower oral dose, instead of a larger intravenous dose, it might not prove so toxic.

Like I said, this is a lot to digest. I'm going to bed now and will write more tomorrow. Those of you who live nearby and want to talk, I'm just not up for it now, but Rik might be.


  1. Lorenzo8:04 PM

    Dear Jill,

    i'm so sorry for the bad news. if gamma knife is an option for you, i believe it's worth to fight to cover the costs from the insurance company, rather than have WBR.

  2. oh jill. jill.

    i hold your hand as you take in this news.

    sending love.

  3. I'm not even sure what to say. You are in my thoughts and prayers.

  4. Difficult to hear, and there's no easy response. But, IF it is brain metastases (and you probably want to find someone who can say so with more confidence before you take ANY action), the brain is amazingly resiliant. Just keep up the good fight and we will all keep praying so you can outrun this thing until modern science catches up and overtakes it.

  5. I was sending you good vibes yesterday and will continue to do do. I'm sorry for the results. Fight on. Get all the facts and consults and risk/benefit analysis. sjtm

  6. Anonymous12:31 PM

    Sorry to hear of your news. My wife has metastatic breast cancer with mets in her bones and liver. Two months ago, after developing slurred speech and showing some signs of confusion, we took her to the ER where they found she now has brain mets. She had whole brain radiation, and a course of steroids to reduce any swelling, and is now back on her feet. She's not showing any side effects (yet) from the whole brain radiation (the steroid side effects were awful). Turns out that she has many lesions in her brain so WBR was the only option. Just wanted to let you know that for at least one person (my lovely wife) WBR has not been as scary as we thought it would be.

  7. Anonymous4:14 PM

    Dear Jill,

    I just heard about this very tough news. I will be keeping you in my thoughts and prayers.

    Thank goodness, I was *finally* successful in subscribing to your blog just now, so I will be following your posts and hoping for the very best possible.

    If there is any way I can help you and/or Rik, please keep me in mind. I hope you will be able to relish singing with Dunava at Folklife.

    Sandra L

  8. Anonymous10:27 AM

    Hi Jill – I am sorry to hear of your diagnosis, but please know that there is a great deal of hope. My wife was diagnosed with brain mets from HER2+ breast cancer two years ago. Originally, she had 10 lesions, so whole brain radiation therapy (WBRT) was the only option. Although all 10 disappeared from the treatment, three tumors reappeared six months later. She was treated by Cyberknife at Swedish and is doing remarkably well today. Her Oncologist is Hank Kaplan and her radiation oncologist for Cyberknife was Brian Lee. And, the cost is not per lesion as you were led to believe. Our insurance paid $77K for three lesions - less than 45 minutes in the machine. I will be happy to talk to you or have my wife do the same - you can reach me at Best to you, Rick