Carla,

I was two yrs, 6 mos. out from Stage IIIb, Invasive with two tumors and Inflammatory when I was dx'd with mets.

First, mediastinal nodes, spot on lung and pelvis. Then two months later, brain mets, 1.5cm and 6mm.

Have remained NED in body since end of '02. Brain mets recurrance twice. First time: 14 in number. Second (and currently): 6-8 in number. Three of these current lesions are at 1cm in size, including one on my pons/brainstem.

These current brain mets have been responding, off and on, to Xeloda/Temodar for just short of three years. We added Tykerb last Oct. but had a bit of progression early spring anyway.

I have not been on Herceptin since tx with Navelbine worked so well back in '02.

I am er+ pr- but have refused the hormonals since bad experience with Tamoxifen early on.

so...... things might have been different if I had done something 'preventative'. But, for many it has made NO difference. To me, it is a personal choice and 'comfort level'.

My goal is quality of life, period. This is easy for me being an old fart.

Very best wishes to you,
pattyz

It will be 2-1/2 years in July for me. I have been NED for a little over 2 of those years, I had 2 small lung mets. Feeling like my old self but have to go back for scans in July. I'm getting nervous again...Good luck to you and congrats...sherryg683

To address the second part of your post, I was on weekly Herceptin for the first 2 years, dropping back to every 3 weeks after that. I take tons of turmeric (curcumin), grape sead, and green tea daily..sherryg683

Carla
You give us hope...and I love your spunk...but your onc. sounds like they need an attitude adjustment....I say use the attitude that makes you feel good...and you have found yours!!!!!

Oh PattyZ, thank you, thank you. I figure it will be back, but I hope. You are hope.

Yes, Maryanne. Got up this morning wondering how stupid am I to put up with this. She is by far the most knowledgeable one where I get treated. Did not like her the first time and asked for a consult. The one I wanted to see delivered her first baby the day after we consulted. She said she would just be constantly deferring to her anyway, as she had much less experience with BC. So stuck with the crab for a while. Then one of the four other docs retired without notice and it was impossible to see anyone else. Just an all around lousy situation. They have not yet hired a replacement.

But Monday, come h--- or high water I'm going to change. During my appointment the other doctor I wanted tapped softly on the door and said she needed some input on another matter ASAP. She winged into her as she does to me. Figure she's got to be sympathetic and will work me in.

Carla

Carla,

Congratulations on your clear scans! As you can see from my signature I am 3 years post brain met and still NED. I take lots of supplements, exercise regularly, eat lots of chocolate and drink wine, margaritas, and beer!

I don't know what is working for me, but I'm afraid to change anything.

One thing that I will mention is that I was originally diagnosed as ER-. When I went to UCSF to consult about my liver mets in 2002, the specialist there said that looking at my original path reports, I was actually less than 10% + for ER , but she thought it would be worth putting me on Femara anyway. I have been on Femara and Herceptin ever since.

So just something else for you to consider, cause you just never know. Kim

Carla, Oh how can we not respond to that type of treatment from your oncologist. I am with Harrie, time to look for a new one. It is SO important to have a really good rapport with our physicians.
As far as never hearing about this web site, my oncologist will sometimes say to me,"what does your web site think". She also recommends it to other Her2 patients.
I for one would certainly love to hear that you have found a new oncologist that you trust and respect. Karen

Thanks all.

Her nurse is supposed to call me today. Time to move on.

Carla

I'm back with baggage
 

Hey all,

I have a single brain met that refuses to clean up after two craniotomies.

I am now on my second week of lapatinib monotherapy. I seem to be a rarity in the journals and am looking for anyone who is in a similar boat.

Carla

She kept my favorite chemo nurse in the room the whole time as "witness"

Did the onc actually refer to why the nurse was there? Does the nurse agree with the onc? Sure seems like the onc is forgetting why she was hired and who she works for.
Is the upcoming consult at another facility and something she hasn't recommended?

Check out my sister's history...
 

Hi Carla,
Do read through my sister's history to see the therapies that have worked for her for varying lengths of time. She has been getting infusions of CPT-11(aka Irinotecan) plus Avastin plus Herceptin every 3 weeks since May'08, and the experimental combo has been working remarkably well, so well that she will be dropping the CPT-11 chemo to see how she does without it, since she has been stable for a good while.

I hope you are doing well, and don't need to journey through many therapies, but wanted you to know there are many options to try if you need them.

Emmay

Glad your scan was clear. Hope it stays that way forevermore!

What about Cyberknife focalized radiation?
 

Carla,
If you just have one stubborn met left, and it's not too big, I'd urge you to look for Cyberknife or Gamma Knife focalized radiation therapy. It's easy, virtually painless, and the mets that my sister had cyberknifed have not recurred.
Emmay