New Member

[Kathy in Iowa]

Hi everyone! Wow! What an awesome and wonderful site!! :) I wish this site had been available five years ago when I entered the NCCTG N9831 Herceptin trial! What a powerful way to build community and support in a speedy, high-tech way.

My stats: Diagnosed September 2000 at age 46, at the start of my daughter's senior year of high school. Stage IIIA, Her2-neu 3+, 13 of 19 nodes malignant. Lumpectomy followed by four cycles of AC followed by 12 weeks of Taxol with Herceptin; then radiation with 9 more months of concurrent Herceptin. Put 18,000+ miles on the car, and it was worth every gallon of gas!! Good news today at my six-months check--"everything normal". So far, so good, SO GRATEFUL!!

I found this website by accident (grace??) while surfing. Hang in there, everybody, and thanks for the pleasure of meeting other members of the Her2 'club'. Kathy in Iowa

P.S. I've never talked with anyone enrolled in the N9831 study. Anybody like to compare notes??

[Joe]

Kathy,

Welcome to our support group. We've been around since December 2001. We have several ladies who were enrolled in the various adjuvant therapy trials.

You may also want to post on the main board.

Warmest Regards
Joe
Webmaster

[RhondaH]

WOW, what AWESOME results and an encouragement to us all!

Rhonda

[Unregistered]

Hi Kathy--I wasn't quite 'in' the study since I was rejected from it because I also had M.S. However, because of that my onc. allowed me to have Herceptin out-of-protocol. I was dx'd with a 2.5 cm invasive lobular tumor 9 mos. after a supposed normal 'mammo.' I opted for a bilateral mastectomy because of a bad family hx of bc and because of the propensity of lobular to spread to the other breast. The pathology on the malignant breast indicated that not only did I have a 2.5 cm lobular tumor, I also had high grade dcis with extensive comedo necrosis, and a separate tumor in the nipple with dermal lymphatics (rare presentation of IBC). Report also indicated there was Pagetian spread. In addition I had 9 of 12 positive lymph nodes not matted together (although first CT scan done about a week after surgery) stated that there appeared to be remaining lymph nodes (not removed) that were matted together. I also had extensive lymphovascular invasion and extracapsular spread. At time of dx my tumor markers (both CEA and CA27-29) were also elevated.
Four weeks after sugery I started chemo--4 rounds of AC, followed by 5 weeks of radiation, and then 2 Taxol and 2 Taxotere along with weekly Herceptin of which I got for one year! I started Arimidex about 2 mos. after completing chemo. I also wanted to mention that I was dx'd at age 50--9 mos. after a supposed 'normal' mammogram.
At the time of my dx I was quite naive about b.c. protocol. I thought one either had it or did not. I had no idea there were so many different kinds, let alon variations amonst each type. Re my cancer dx--I feel like I jumped off or actually onto a moving train and am still hangin' on for dear life.
--So, although I didn't participate in the b.c. trial--I WAS given Hercptin...

[DarMary]

Kathy in Iowa

New member here -- just found this helpful site. Its good to read about survivors -- I was just diagnosed -- lumpectomy, small tumor, 2 nodes out --thought it would be just radiation until HER2 grade3 -- so either chemo or a year of Herceptin. Still in shock!
(Former Urbandale IA resident)
Darmary