New to stage 4, what do I do now?
 

Hi, this sucks that I'm writing this, but i got the news today that i have one single brain met. I can hardly see, and this is why i went to emergency on the weekend. Anyway, I see the surgeon tomorrow morning. My oncologist isn't in until Thursday, so I would like to ask your advice. What should I expect for treatment? Should I be asking for a specific drug? I'm feeling very lost and I'm reaching out to you guys to help me out a little for some guidance. Thanks my friends.
Jill xo

Re: New to stage 4, what do I do now?
 

Jill,
I'm only a few months ahead of you on the brain met journey. Here's the link to the thread I posted when I found out. Hope it helps.

http://her2support.org/vbulletin/sho...ght=Brain+Mets

If I can help, answer any of your questions...commiserate...just let me know. So far, it really hasn't been as bad as I expected. But, those first 24 hours were scary, very, very scary.

Take a deep breath, and just take one step at a time. You CAN do this!
Denise

Re: New to stage 4, what do I do now?
 

Hi, Jill,
I am sorry that you are in this position, that we all are. I do, however, have a different take on this whole process, journey, affliction. I don't quite believe in staging. You have not fallen off the cliff. Cancer in so many ways is a state of mind. (A side note: listened to an interview with a cancer survivor/beater who wrote "I Thought Of Sausage"...we have quite the same line of thought). I think the first thing you should do is relax and get to a place where fear, shock and discouragement are thrown aside, and forge ahead to your path of wellness. There are many here with many more years of experience than I, but I offer you my system of living because it works--for me. We will all be by your side--
Yours,
Karen

Re: New to stage 4, what do I do now?
 

As always, Karen has said it beautifully!

First, breathe. There are frequently many treatment options to deal with brain mets. You will probably consult with radiologists as well as the surgeon, to determine if a targeted radiation like gamma or cyber knife would be appropriate.

There are chemos as well as targeted her2 therapy (tykerb aka lapatinib) which can cross the blood brain barrier, and have been effective in holding brain mets at bay for many, including some members here.

One step at a time. Breathe.
Chris

Re: New to stage 4, what do I do now?
 

Karen and the others give you great words of wisdom. There are some fantastic stories of brain met success on here - I am sure you will be another.
Breathe and best wishes.

Re: New to stage 4, what do I do now?
 

Dear Jill, I'm sorry I have no advice. Please know that you and your beautiful little family are in my prayers. Gods blessings to you.

Re: New to stage 4, what do I do now?
 

Jill,

I'm really sorry to hear your update I hope you get some help from Denise's link there was a whole wealth of info on her threads.

You are in my prayers. I too have a young family and I think this escalates our fear..... There is lots of help and treatment options out there make sure you find out everything so you are armed with knowledge and get a seat at the knowledge table.

Good Luck sending big hugs

Jenny x

Re: New to stage 4, what do I do now?
 

I, too, have no advice...sending peaceful healing thoughts your way. And I always believe in the .... breathe...breathe...breathe!

Re: New to stage 4, what do I do now?
 

Thank you so much my friends. I just loved reading all of your messages. It brings so much support and hope. The oncologist gave me a statistic life expectancy today, which I didn't ask for. I know that everyone is different and that Gamma knife is very successful, so I have to hang on to that. I'm going to LA tomorrow. I know it's risky, but I have Ellen tickets. Tune in September 26th!! I'll be in the audience busting a move. :)
I'm on the steroids, so that should reduce my swelling. Lets hope for no seizures. Fingers crossed.
Thanks for the link Denise. I read up and received a lot of knowledge. Did the doctors speak to you about Lapatinib? They said they wouldn't put me on it, unless there was something else going on in the rest of my body.
I am really hoping for a drug that will cross the brain blood barrier. I have hope.
Much love, Jill xo

Re: New to stage 4, what do I do now?
 

Hi Jill,
Wow! Ellen! How cool is that!?!
I hope you enjoy your trip as much as humanly possible! Good for you!

The next steps on my journey are "chronicled" in the thread...

http://her2support.org/vbulletin/showthread.php?t=55451

And then...

http://her2support.org/vbulletin/showthread.php?t=55534

I hope those threads help you see just how do-able... and survive-able this can be. Steph, Brenda, Jessica...and others...are several years out from the same diagnosis you and I have. Let's plan on being like them!

Again...I hope you have a super fabulous trip!
Denise

Re: New to stage 4, what do I do now?
 

Dearjilly,
To get medication around the blood/brain barrier problem, a possible approach could be to administer the Herceptin directly into central nervous system via an intrathecal or lumbar puncture, if oncologist is willing to go that route.

Ronpaule, a member of this Board, has discussed this particular subject at some level of detail. A search for those posts or possibly even sending an e-mail may provide you with more knowledge about this procedure.

Re: New to stage 4, what do I do now?
 

Dearjilly, I am sorry to hear of your diagnosis. Try not to worry too much about the staging although I know how difficult that is. I started my journey with Her 2+ breast cancer when my children were 2 and 4. When they were 7 and 9 it metasized to my bones. This was 2009. I was on Herceptin for three years and just recently switched to Xeloda and Tykerb because the Herceptin was no longer working. My children are now 12 and 14 and I am still fighting and I continue to for many years to come. I am determined to raise my children and refuse to let this disease get the best of me. I get up each morning and thank the lord for allowing me to see another day. The best advice I can give is to take life one day at a time and enjoy your family. I don't think any doctor should give life expectancy because they can't possibly know. Only GOD has the answer to that. Keep fighting and trust your journey.

Re: New to stage 4, what do I do now?
 

Dearjilly,

If you go the the 'Calling all stage IV Sisters' thread http://her2support.org/vbulletin/showthread.php?t=48453 , you will find quite a few Her2 sisters who are currently enjoying the NED (no evidence of disease) status after a brain mets diagnosis .

You can locate their stories by going to the 'Members List' or do a 'Search' with their registered name.

I remember similar shock when I was diagnosed with a (life-long)brain tumor 22 years ago and breast cancer 9 (and 5) years ago...