Boston Globe article

Good article in the Boston Globe this AM (2/7) page 1 and cont. on page A17-- re: breast cancer mets to brain-- lapatinib and trials
Carol

[Joe]

Here is the article:

Screenmane: Her2
Password: member

http://www.boston.com/yourlife/healt...vivors/?page=3


regards
Joe

Still scares the poop out of me that I have to worry about losing my mind. Nothing scares me more than it going to my brain. I hate living with this. I was dxed on 4/20/05, er/pr and her2 +. Had 4 a/c, then 12 taxol and hercepting, now I'm in rads, 10 done 25 to go and still get herceptin every 3 weeks till Sept. I pray and pray that I don't ever get brain mets. I had no positive nodes, but still you never know.

How do you all go day by day and not worry. I panic at every headache or change in my sight BC suc*s.

Sorry just had to say what I was feeling................

[StephN]

Dear Unregistered -
Please don't let one unthoughtful comment in that article get you so scared.
I have been living with brain mets now for a year and half and have had NO loss of function - indeed NO symptoms.
It depends on where the tumor(s) locate themselves. Mine happen to be in the cerebellum and this is not the same as in the upper part of the brain.

Try not to think about it and just make sure you get a brain scan every year or so to keep you at peace, OK?

[saleboat]

Yes, the thought of having to face bc again, especially in the brain, is terrifying. But reading the stories of the women on this site who face the disease again and again, in the brain, liver, bones, etc. gives me the courage to live today believing that I can handle anything that comes my way.

for responding, it is just so scary, but yes you ladies do keep me going, you all have gone through so much and just keep going, you are my inspiration.

may you all keep going and beat this damn thing..............

oh by the way I'm Randi

[karenann]

I prefer to read the posts by the wonderful women living with brain mets on this board. That article depressed me.

Karen

[Barbara H.]

My daughter picked me up from work today and had already read the article. She was somewhat upset. It hit home because I had brain mets and am being treated at the Dana Farber. I think we just have to consider all the women here who are dealing with brains mets and doing OK. The positive side is that there is much more interest to learn more about how to treat brain mets and there will be hopefully more research that will benefit us in time.
Barbara H.

Can I be the grump here? I saw the article the first thing this morning and--while I'm used to the fact that it is hard for general-interest journalists to get things right, this article seemed particularly unwilling to get the basic facts right. From its faulty initial premise ("there is something new out there to scare women living with breast cancer") to its inability to define basic terms the whole article I thought confused more than it clarified--i.e. who got herceptin as an adjuvant treatment (none of the women discussed in the article) versus who got it after metastasis. For most folks on the board here there wasn't any news here and for the uninitiated it was full of misleading information.

I can't help but feel a little cynical about it. The Dana Farber guys were slow on the herceptin bandwagon (and one of them even made fun of the UCLA doctors to me for being too eager to use herceptin as an adjuvant treatment) and this article seemed part of that whole old tension...

Best to all,
Jeff

Randi,
I've had brain mets and recurrant brain mets for three and a half years. So far, I've not lost my mind. But that was the worst fear for me in the beginning.... and is still a concern for 'the end'...

Of all the dear ones I know and have known with brain mets, none have "lost their mind" until near the very end. And that could certainly be from heavy drug dosages.

My brain mets have been all over my brain. The thought of losing my personality and saying weird, mean things to those I love comes from frontal lobe lesions... I have even told my loved ones that it WON'T BE ME if that ever happens...

The bigger concern I have had is whole brain radiation. That does indeed have long term detrimental effects. That's why I have refused to have it from the beginning.

Get a brain MRi with contrast to ease your fears. Complain of headaches if you get any grief over it.

You can choose to live these days wasted in fear, or choose to just LIVE them to the fullest. I realized I would be very pissed off if I wasted years in fear, so I chose a different direction.

warm wishes,
pattyz

12-1999: Age 50, Dx'd Invasive Ductal & Inflammatory. Two tumors, upper and lower inside quadrants R/breast.

1-2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb - 4rnds A/C, no rads (my choice & no medical ins.)

7-2002: Dx'd mediastinal node/s mets, (surgical biopsy), 'spot' on lung and pelvis. Arimidex briefly.

9-2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

11-2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

3-2003: Progression of brain mets. 14 new lesions visable. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach. Treat in small batches with two more SRS, two CyberKnife procedures through 5-2004. NED in body.

3-2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) Again 'watch and wait' approach until...

8-2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

9-28-2005: Following 2 rnds, MRi shows response of nearly 50% shrinkage in many brain mets, including brainstem/pons. Dizziness gone.

11-28-2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.


12-19-2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable.

1-26-2006: MRi shows all stable. Will continue chemo combo.