Re: Calling all stage iv sisters
 

Stage IV since August 2005...

Re: Calling all stage iv sisters
 

Stage IV since 1/2010. NED since 4/2010!!

Re: Calling all stage iv sisters
 

Hi.. I have not posted in a long time but do keep up reading on the site. I just want to say I have been stage 4 from my original diag back in 10/04; I am currently on the TDMI compassionate use trial in VA, which happens to be the oncology group I use. I had a miracle happen right from the very first time I started the regiment. My one tumor which was partially above my pec area about 1/2" completely disappeared - this gave me so much hope that I knew the all the nodules in both lungs were going to be gone. Needless to say when I got my first Pet Scan I was NED .... !!!! I have not been NED in years .... I know we never know which combination will work but I am thankful through prayer this is the path I took. I am relieved that I can continue this trial until further notice...

Debbie

Re: Calling all stage iv sisters
 

Ladies,
Everyone's posts have been an inspiration for me now that I've moved to IV. You all have given me good reason to fight this beast.
I've been feeling very down the last four day's waiting to know my dx and treatment options. You all have given me reason for hope and the ability to have a good nights sleep.
Kris...

Re: Calling all stage iv sisters
 

Hello all-

I have not posted much and have not logged on in several months. This was the first thread I saw when I logged on this evening and knew I had to respond. I was diagnosed Stage IV in September, 2007 with mets to the liver. I am currently NED.

Pam- My Onc does follow my CA 27-29 and now that I am NED it is in the normal range. Mine seems to trend with active disease, so I assume that my Onc would likely do a scan if mine rose above the normal range.

To all of those that are newly diagnosed, please keep the faith.

Re: Calling all stage iv sisters
 

Wow, wow, WOW - there are some amazing stories here - Thank you so much for sharing, ladies. You are all so incredibly inspiring and encouraging. I too had an amazing initial response to my first line therapy when I was first diagnosed with wide spread metastatic disease in April 2008 - my breast tumor melted away completely and I have never had surgery. Although I've had a few pesky reoccurences else where - things have mostly gone away and I am looking forward to my long and happy dance with NED very soon - just have to make sure the brain is clear and that the bone spots still lighting up are from t-cell activity caused by the vaccine - hard to know right now but that is the theory I'm going with. Otherwise, my lungs and liver have been disease free for quite some time now. Praise God!

Re: Calling all stage iv sisters
 

Hi Sisters
You have given me some encouragement

Re: Calling all stage iv sisters
 

I'm curious - as I was only stage 1 --- are all these Stage 4's on Herceptin all the time? It appears many of you have this in your stats but not all....

Thanks - Karen

Re: Calling all stage iv sisters
 

I have been stage IV since 12-12-07. I am very happy to have finished three years. This board has helped me to have faith and to continue to work and be productive. Yeah. Thank you to everyone who participates on this board.

Amelia

Re: Calling all stage iv sisters
 

Hey, don't forget me! Stage 4 since March 2007.
Yay ladies - your posts gave me a much needed charge tonight. xo xo xo xo Flori

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Karen Wheel -
The current thinking and standard of care is that you should ALWAYS have a her2 targeting agent in the mix and there is a lot of data showing continued synergy with herceptin. So, yes, most of us are on herceptin or another her2 agent (like tykerb) all the time.

Re: Calling all stage iv sisters
 

Karen...quick answer, I have been on Herceptin non stop for 8 years...it has been the backbone of every treatment I have had, although it doesn't keep me stable as a single agent, it is my silver bullet in cancerland.

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Thanks for giving me some feedback on the Herceptin....
Sheila ... I too believe Herceptin is key!

Karen

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It was very hard for me when my onc said he was taking me off Herceptin as he and Dr. Slamon felt I was cancer free and my heart needed a rest. When I read about the liver and brain mets that alot of our sisters are experiencing, I feel like calling my onc and asking if I can resume Herceptin. I wonder what the answer would be. For sure Herceptin saved my life. Mary L

Re: Calling all stage iv sisters
 

Hello,
I have been stage IV since almost the beginning of this journey, 10/17/2007. Dx with one small met to the liver, on Herceptin continuously except for a 4 months in in 2008 because EF dropped to 40. While off the Herceptin I developed a met to my spine, both my liver and spine have been treated by cyberknife radiosurgery. NED and on Herceptin weekly so not to upset my heart, its working great! Blessings to everyone, you guys rock, you give me so much hope and strength. I am so glad I found this forum.
I am leading a very normal life, working full time, going to school and doing everything I want. If I didn't have to get a treatment every Monday I would be perfectly normal.
Pat

Re: Calling all stage iv sisters
 

Well, thought I'd waddle over here after today's news and remind everyone it can be done: Stage IV, six months of Taxol and Herceptin and I am NED. So this is Day 1 of my NED, tomorrow is Day 2, Friday is Day 3...

Re: Calling all stage iv sisters
 

Diagnosed Jan 2006. Stage 4 since July 2008. Still here!!

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Stage IV since July of 2001.

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I am sitting here in tears from the pure selflessness of you ladies sharing.
YOU are my hero's!

with love,
Marcia

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Been stage IV since 2001......Almost 6 years NED!

Still on my Vitamin "H" and Femara.

Kim