More questions for my HER2 sistas

[valleygirl]

My question is to all you stage 4 ladies. How did you know when your cancer spread? I've read that headaches are a good indicator that it's moved to the brain, but what about the liver or bones? are there symptoms that we should watch for? I'm also having the same bone pain as KsGal. I've asked my doctor if that could be a sign that it could be spreading and he told me no. I've asked about scans and he didn't feel that I needed them. I've requestedto have blood drawn to know my tumor markers and he told me that they are not a good indicator. Ok, so what should I be
looking for? I'm thinking of looking for a new doctor. I'm driving 3 hours one way to go to the Cancer treatment center of America in Philly and thinking of looking for a doctor closer to home. So glad I found this site!!

[schoonder]

If unable to locate a new doctor much closer, Fox Chase Cancer Center also in Philadelphia, has an excellent reputation for patient care.
http://www.fccc.edu/whyChoose/philosophyCare/index.html

[NEDenise]

I'm being treated at the Hospital of the University of Pennsylvania, in Philadelphia...and I could not be happier with the care I've received.

Hope you can find a doctor who's "on your team" very soon. You deserve it!
Denise

PS- my mom was treated at Fox Chase...and they were great too!

[yanyan]

Hi Valleygirl, let's hope it is nothing serious ! An MRI or PET is usually the best way to tell if cancer has spreaded. Can you schedule a scan with your local oncologist before driving 3 hours to the treatment center?

[schoonder]

couple quick follow ups:

"Genentech plans to open an Expanded Access Program (EAP) in the United States to provide, under certain circumstances, people with HER2-positive mBC access to trastuzumab emtansine while the company seeks regulatory approval."
http://www.gene.com/gene/news/press-releases/display.do?method=detail&id=14147

"Based on these updated overall survival results, people in the lapatinib and Xeloda arm of EMILIA will be offered the option to receive trastuzumab emtansine"
http://www.roche.com/media/media_releases/med-cor-2012-08-27.htm

[chrisy]

It is nerve wracking. For me, it was out of the blue - I started having stomach issues and after about a month of tests and stuff, they discovered my liver was chock full of tumors. Oddly, the stomach "symptoms" had gone away on their own by then - I firmly believe it was a warning call for me to get to the doctor.

In my case, nobody expected it and in fact they were in denial that it was the bc. Note, that was way before early stage herceptin and I had no systemic or radiation therapy.

So you can't always tell. And there are not always symptoms early on. I think the best idea is to get screening ct or pet and brain MRI, then if you have persistent symptoms that last more than a couple of weeks, check it out. Because brain mets are often asymptomatic at first, see if you can get regular screening scans, like every couple years, but many doctors don't like to do these without symptoms. The significance of getting the brain MRI is that herceptin does not cross the blood brain barrier so is not protective there.

I think tho, I would reframe your point about headache being a good sign of brain mets, etc. many of the things you describe could he caused by myriad reasons that have nothing to do with cancer.

That's just my non– professional thoughts! The main things you have a medical team you feel,comfortable with.