brain mets what treatments?

[Patty H]

I was told today that I have brain mets.It's moving fast. They want me to see a radiolist today! In away I'm glad they are moving fast but it only gives me a couple of hours to do my home work. I shold have done it sooner but I felt so bad the last couple of weeks. With headaces and vomitting. In just two weeks I was going to get the tykerb on the exstended plan. I don't think they will let you take it with brain mets. Does anyone know? Patty H

[StephN]

...that you have brain mets, Patty.
When you are feeling awful with symptoms is the TIME to not wait. I am just very glad they want to see you right away.
I am not sure what they will think about the Tykerb, as the rad oncs are not very familiar with it yet. But your med onc that has been setting you up for that program should be able to give you the answer. Since it does cross the blood/brain barrier I would think you could take it. It may also be a matter of getting something going against those brain mets NOW and not in 2 weeks.

Just make sure that the docs all confer with each other and keep you in their loop. Ask a LOT of questions, and ask more than once if you are not clear on their replies. The final decision is YOURS remember, but make sure you get as many details as you can and have someone with you to take notes or tape the consultations.
This is VERY frightening, and we don't always think clearly when we have a lot of concerns about family and how we can deal with all the possibilities.

Being part of this group has given you some background on what the rest of us have done in our individual situations, so I hope this background will help you to sort through all the jargon and treatment possibilities.

Sending you all best wishes for strength and moral support in the coming days.

[Joe]

Patty,

There are clinical trials of Tykerb and brain mets. Have your onc call Dr. Eric Winer at Dana Farber in Massachusetts. He has the most experience in brain mets and Tykerb.

Regards
Joe

[mkrny]

We were confronted with this in March. Here's my opinion based on our experience:
1. first explore surgical removal,
2. also talk to rad onc to see if radio surgery is viable, they will likely discuss whole brain radiation(WBR) as well,
3. set yourself up to start the tykerb trial right after surgery

Ask surgeon (and rad onc) about potential deficits after surgery. If tumor is in a good spot and surgeon is confident about complete removal with minimal deficits then cutting it out should be strongly considered as first step. If WBR is part of your tmt see if your rad onc will let you do some chemo in parallel since there is evidence that BBB opens up during WBR allowing chemos to come in.

My wife's status didn't present a clear path as she had & has leptomeningeal decease (cancer in CSF). She had WBR, radio surgery, IT MTX + chemo to body and now is on a tykerb/xeloda trial. Both tykerb & xeloda have small molecular structure small enough to pass through BBB so having brain mets shouldn't eliminate you from consideration. In fact it may be one of the inclusion criteria in some of the trails.

Hope this info helps.
Keep on fighting,

[pattyz]

Dear Patty,

Everyone has given you wonderful advice and options. And I concur with them.

I had just 24hrs to do my research and when my medical onc said: you'll need whole brain radiation, I said: I want Gamma Knife.

I was immediately put on Decadron. That does a great job on the symptoms of brain mets, but wrecks havoc with the rest of your body and mind...

It has been over four yrs now, with a total of 24 tumors in brain. I am currently responding (knock wood) to Xeloda/Temodar for 8 lesions... and have been for just over a year.

I've had five seperate focalized radiation treatments to treat 16 brain mets over the course of 18 months... and have been fortunate (and persistant!) in avoiding WBR.

Hang tough.... no matter how terribly frightening this news is... believe me when I say you can survive this, too.

big big hugs,
pattyz xoxox