Brain mets - followup with med onc

[StephN]

Just wanted to include a couple more items from my meeting with med onc today.
Firstly, I let him know that I had been very much empowered by this group's message board and he could see the difference it made. He is a very knowledgeable and thoughtful doctor and we interact well.

My CEA tumor marker is up to 10.7 this week with normal 5 or less (checked every 3 weeks). He says it is obvious that this brain met is making this protein and will be a good one to follow. (He will keep the CA27-29 as well - hasn't moved.)

He was happy that the tumor board had met and recommeding Gamma Knife which was his thought also. He feels I will do well with that, and EVEN SAID that I may never have more mets if this is a success.
That was said on the basis that I am in a patient class of a "responder" (he joyfully declared me a "COMPLETE responder") and this is also in my favor, as mentioned by the rad onc.

Based on my findings this week, he is also going to order a brain MRI for another patient in my trail who is NED. He had this in mind, but now he will not wait. I don't know her Her2 status, but she is very young!

His main concern seemed to be that we do all we can to keep the rest of my body taken care of from cells that may come back from the brain tumor. No need to change from 3-weekly Herceptin and adding the Zometa back from 6 weeks to every 3 weeks.
I do not have a radiosurgery date yet, but we made a followup appt anyway, based on when he thinks I will have the first MRI post Gamma.

I asked about monitoring my spine to the rad onc. He said there is nothing in my leptomenengis and no spinal tap or MRI was needed.

Now you have the latest! Thanks again for the prayers and encouragement.

While I am so sorry to hear that you have a brain mets, it sounds like you are approaching it informatively. I had gamma knife last summer with no after effects, and you have every reason to expect that this procedure will knock that lesion out for good! My thoughts will be with you and I wish you the best!
Love, Jackie

Hi Steph:

Sounds like you have it under control and did a great job with it. Best wishes, and hugs, Sandy

Hi Steph! Thanks for posting as I have been thinking a lot about you and hoping you would let us know how it goes. I'm glad for all the good indications.

I just finished reading Groopman's book, The Anatomy of Hope. Keep that light burning bright, my friend.

XXXX OOOO

AlaskaAngel

[Lolly]

Steph, I feel much more encouraged for you also, hearing your onc's doing such an excellent job and that your spirits are high...still looking forward to a get-together in Seattle, more on that in a few days, but in the meantime hang tough :)

Love, Lolly

Stephanie, I also was diagnosed with a recurring brain met last week in addition to the lung mets that are progressing. I am having Gamma knife tomorrow. Neurosurgeon seems to have hope that it will work again. It is at the very exact spot as the old one but is a little bigger this time. The first one didn't progress for about a 1 year. Your post brightened my day.

I too have been diagosed with liver mets and lung mets. I am not a candidate for herceptin. I am on xeloda and I am looking into ablation therapy. Any info would be great.



Thank you.
Karen