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View Full Version : Here we go again, need support!!!


Ballstmom
11-13-2012, 04:20 PM
I have read this site for may years. My story in a nutshell is:
1998 -DCIS, mast, not clear margins, radiation
2005 - other side masta and positive nodes, chemo, rads, er/pr+ HER2+ ; ACT/hercepting
2008 - hysterectomy, to finally stop shots, something small in ovary, too small to fuly path. Called it breast so I could go back on Herceptin. So abraxane/Herceptin (seems like something else but dont' remember.

2010 - one spot in rib; rib removed; been on Herceptin, zometa, faslodex since

1.5 weeks ago, pet showed a few spots in different places in bones; and two in liver. None larger than 1cm. liver biopsy, er is now neg. Waiting to find out on HER2.

SCARED!!!!! I'm a nervous nelly type anyway until I know a plan.
He said if HER2 still, then tykerb. If not, them chemo.

I know other bc survivors, but no one near this same situation.

I'm worried about how often the HER2 changes from pos to neg?

And need comfort and support that life goes on! You've all been inspirations to me for so long even though I only read your posts

Ball State Mom.

Mary Anne in TX
11-13-2012, 04:43 PM
Maybe step 1 of your plan could be to get a 2nd opinion. Take both Dr.'s advice to think on and then you decide what sounds best for you. Once you have the plans, post them and let people who have had similiar treatment give you feedback. I'm sorry that you even have to put your mind on this. Hoping you find some peace about a plan quickly.

Ballstmom
11-13-2012, 04:56 PM
I forgot to say that I will be getting a second opinion from Dr.Kathy Miller at IU Med.

tricia keegan
11-13-2012, 05:51 PM
I don't have any advice as such except to say I'm glad you're getting another opinion and we're all here for you and sorry you have to face this!

Emy
11-13-2012, 08:35 PM
I started tykerb along with Faslodex and herceptin for spots on my liver and bones, after herceptin and femara stopped working in may.....my tumor markers went down and pet scan was much better but now tumor markers are starting to creep up...scared too...don't know what is next.....

Pray
11-14-2012, 06:23 AM
Ladies, Please know that you are all in my prayers. Gods blessings to all.

Hopeful
11-15-2012, 03:22 PM
I'm worried about how often the HER2 changes from pos to neg?

According to this recently published study, around 15% of the time: http://www.breastcancer.org/research-news/20120620

Best of luck to you with your new treatment plan,

Hopeful

Ballstmom
11-16-2012, 03:04 PM
Well now it's her2 neg; so start HavalenTuesday.

StephN
11-16-2012, 03:44 PM
Hope you got to consult with Dr. Kathy Miller. Having heard her speak in San Antonio a couple of times, I can say I have a lot of respect for her.

Halaven has worked well for some of our members here. Most notable for quite a while for Jessica (JML).

Hope your next scans will have good news!

Ballstmom
11-16-2012, 04:03 PM
They weren't able to get me into see her for about a months , but my Onc. talked with her and they agreed on two paths, with one being better, the Havalen. So we're going with that. Steph I have always been encouraged by your posts and history!

KsGal
11-20-2012, 12:51 AM
I don't have any advice...just wanted to say Im sending lots of prayers and positive energy your way. Please keep us updated. Big hugs!!

Ballstmom
11-22-2012, 07:43 PM
Please remove me from the list of sisters; it is bothersome for me to be there. I appreciate your helpfulness though.