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Old 09-05-2006, 08:07 PM   #10
julierene
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Join Date: Dec 2005
Location: Illinois
Posts: 327
I think what Joe was saying is that Her2+ have better prognosis than what we would have had in the past before Herceptin. I think we might have a better prognosis than the typical Stage 4. 60% of the Stage 4 women are HER2-. So for those women, if they have hormone treatments they can add to their chemos, they are probably in better shape than they were as Stage 4 before Tamoxifen. It's probably the same for us. Adding Herceptin to our treatment plan, makes us better off than we were before Herceptin.

Many of the Stage 4 data are probably before Tamoxifen and Herceptin are fully able to tip the statistics higher.

The triple negative women, are probably the ones who still maintain the 15% 5-year statistic. There isn't any receptor we know of to treat - however I am hearing some interesting stuff right now about other treatments for other less-known receptors. So if they don't respond to chemo, they are in dire straits.

I have seen first hand that a "triple negative" (er-,pr-,her2-) is super scary. There is a woman who I met when I was first dx. We were dx pretty much the same time and thought our stories were SO similar. Well, just last month when I was getting my Herceptin, she walked in and sat in the empty chair beside me. I recognized her!! She was a TON thinner, and she went from Stage 2a to Stage 4 almost 2 years later just like me. The ONLY difference was she was HER2-. She had brain and a lymph node mets. The thing I remember about her most was how she was obsessed about her diet. She has been a strict vegan since she was around 16. She is now in her early 50s. But for breast cancer, we are young - I'm 31. But it made me mad that my mother died from breast cancer at age 33, and she believed in the whole "diet" thing. And she lived 2 months SHORTER than what they thought she had. Doctors don't like to guess too short. In my mind, I blamed in on that STUPID diet she was doing. All vegetables and fruit and only certain meat. What a CROCK!!! I am definetly on the other side of the whole "diet" debate. People always make the comment:

"How come that 90 year old man can smoke a pack of cigarettes since he was 12, and drink a 6 pack of beer every day, and not get cancer?" My Answer: Good Genetics!

Why are people so willing to think that diet caused their cancer, or will make it disappear? Why would children be getting cancer then? I have rambled enough about that.... the whole diet debate, just burns me because it failed me, my mother, my brother, my grandfather, and my daughter. It's GENETICS!!! Genetics/DNA can fail later in life just as they can be inherited. A simple HPV virus can CAUSE cervical cancer. How do we survive viruses? Our bodies LEARN how to overcome them, which normally means that a genetic change occurs. It's part of the wonderful adaptability of the human race, but to some of us - our demise. It's survival of the fittest "Genetics".

I have liver and bone mets. You would think that would be worse to have 2 areas right? Nope, the brain mets are not shrinking, and the one under her arm is growing - even on huge chemo treatments. I was talking to another friend who said they saw an ambulance go to her house this weekend. One month ago, they thought they were going to be able to shrink everything.
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial

Last edited by julierene; 09-05-2006 at 08:20 PM..
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