Hi New members!! - Page 2

bjj · 11-01-2005, 01:51 AM

Hi

I'm a new member - only found out last week that I am HER2+ - after asking, and asking again, and asking yet again and again to be tested. It's not done yet as a matter of course in the UK.

I was diagnosed Jan this year, had WLE, axillary clearance, radiotherapy but no chemo due to negative lymph nodes. My tumour was grade 2, ER+ and now HER2+.

I am now stamping my feet and trying to get Herceptin - it's an upward battle. I went to a "Look Good Feel Better" make up afternoon yesterday - there were about 10 of us there, a large proportion of whom had breast cancer - I was the only one who had heard of HER2 - I was astounded. You have to ask the right questions in this country.

This seems like a great site

Jean · 11-01-2005, 06:55 AM

Hi Everyone,
I feel as if I found a tall glass of water in the desert when I found this site!
It is a blessing. I was dx in March 2005 - stage 1 ,her2 pos +++, er pos.
I was lucky, I felt something was wrong had a sore ache deep in my
right arm pit. A small 6mm invasive tumor was found, had surgery, lump/and sentinel lymph node biopsey which was negative. Had 26 treatments of radiation and 6 boosters. Now I am on Arimadex. Here is
my question. I have asked my onc about Herceptin and I am told that
since my tumor was only 6mm with neg. lymph node, the protocol of treatment would not be herceptin. I have gone to three top onc. in my area and all say the same. The onc treat the tumor not the type of cancer. It has just about made me crazy with concern that the onc decide on treatment based on tumor size not the type of cancer, the fact that my cancer is Her2 p +++ does not MATTER?
Any advise is greatly appreciated.

Many Thanks,
Jean

lu ann · 11-01-2005, 08:34 AM

Hi Jean, Do you live in the states? If you do, give Cancer Treatment Center a call 800-577-1255, or go on their web site cancercenter.com. You might get some positive results from them. For most patients they will pay for your transportation (spouse or companion for first visit only) and all meals are included for you and spouse/companions (they will feed your whole group) while you are under their care. Most treatments are given out-patient so you would have to pay for lodging. Hotels have resonable rates and they have various groups that give money to patients for help with lodging and bills not paid by insurance. Keep trying, Jean, there has to be someone out there willing to give you herceptin. Blessings, Lu Ann.

dberg · 11-01-2005, 11:12 AM

Hello to everyone! I'm not exactly "new" either, but don't post much.

I was dx June '04, age 45, her2+++, er/pr+, 2/13 nodes, "at least" 5cm tumor, and lots of other nasty proliferative stuff. I had a skin sparing mastectomy, followed by a clinical trial of weekly chemo, rads, tamoxifen, and finally "late" herceptin.

I have been coming to this site since Sept '04. I wish I had found it before my surgery, different decisions would have been made. My onc discouraged me from doing the herceptin trial because he thought the control arm was not aggressive enough, which in his defense was true. I agreed to another trial and regretted it, not because it was difficult but because I knew I needed to be getting herceptin. When the herceptin trial data came out at ASCO I was 3 months out of chemo. I was in his face every single day asking when I could start. He dragged his feet because there were no guidelines but I was RELENTLESS. I learned how to do that from my her2 sisters!

My point is that I don't think I would have known enough about her2 if it hadn't been for this site. The resources, motivation and inspiration it provides are why I check it every single day.

Jean · 11-01-2005, 06:58 PM

lu ann,

Would you believe I live 18 miles from New York City....
I have visited three top cancer centers in NYC!
I now have another appt. with a Dr. that Christine has referred me to on Dec.6th - I look forward to what he advises.

I would like to say that I am deeply moved by all of you. What a powerful
group of women! God Bless and protect each and everyone...

Jean

geraldine · 10-27-2005, 02:46 PM

Hi all.
2001 was the year for me. Dx BC grade 3 Her2+++ node positive (18 out of 22) Mastectomy followed by A/C then 8 doseTaxotere (clinical trial) then 30 rads. Was supposed to have reconstruction at time of operation but surgeon said it was too dangerous to go there. Thyroid shut down due to treatment(now rectified by thyroxine) On Tamoxifen for 1 year before tumour appeared below collar bone. Was put on Vinoralbine/Herceptin. Total regression !!!! Now on Herceptin only and awaiting more results to decide if I can have the long awaited reconstruction. Fingers crossed

God Bless you all Geraldine

p.s. Thanx to the people who started the site, it's inspirational x

TriciaK · 10-27-2005, 05:10 PM

I just want to add my welcome to all the newbies and lurkers. What great stories you all have! It is a fact that cancer patients do much better when they can be part of a support group, and that is what this is, only worldwide. I know Joe and Christine probably get tired of our praise and gratitude, but this site has meant so much to all of us. I can't believe I went through two bouts with BC in the past 20 years without this site. It is so much easier now than doing it all alone. I hope you will all post often and we can get to know each other. Hugs, Tricia

athena453 · 10-27-2005, 07:48 PM

Hi all-

I don't know if I am technically a newbie still, but I don't post often and don't think I have ever introduced myself to everyone. I was dx May 2 with stage 3C. I'm 27, so I don't get mammo's. I never really felt a "lump"...just some thickening of tissue and soreness in my armpit. I thought the armpit was due to either a cold or a pulled muscle. I'm active and in great shape, so I would never have imagined it would be this. I had a mast 5/11; 30/34+ nodes, 8x4x3.5cm tumor, grade 3, ER/PR-, FISH 5.16. I'm not married, live with my boyfriend. No kids, though I do have a long haired orange cat. I worked for several years in the restaurant business until I made the change to the wine industry this spring.

There are tremendously inspirational stories here and this is a great forum for sharing information.

Michelle · 10-28-2005, 07:35 PM

I have been posting on this site for about six months now, but have never introduced myself. My name is Michelle I'am 34 yrs. old , married with two children (2&15). I was diagnosed in March of this yr with 1.9 cm-er+/pr+ -her2+++, and underwent lumpectomy.I have recently finished radiation, and am continueing with herceptin. Still waiting to start tamoxifen. While I may not post often I have found this site to be very informative and helpful. I'am very greatful to have had this site when diagnosed. Many of you have unknowingly given me the courage move through this one step at a time.

Ginagce · 11-10-2005, 11:31 AM

I just found this site yesterday and still trying to get familiar with the format so I hope I'm replying correctly.

I was originally diagnosed with DCIS/LCIS in 97. Had lumpectomy with rads. Diagnosed with node positive her+ in 04. Did not qualify for herceptin trials. Had bilateral mastectomies with DIEP reconstruction. Dense dose AC then Taxol. Went on Arimidex in March and Herceptin in June after it was opened up to non-trial, non Stage IV.

I am single (actually widowed, husband died of NHL in 98) and live in Philadelphia. I am treated at Hospital at University of Pennsylvania.

My best to all.

Gina

11-10-2005, 11:53 AM

Thank you so much for the reply. I will get the info from my mom ASAP so I can ask some other questions. I forgot to say in my last post that while the sergeon said stage 3 cancer the onc said 2b. Is there a big difference? The onc said that at this point it isn't a question of what she had, but what the chance of cancer coming back.

Terena
Utah

chrislmelb · 11-11-2005, 03:05 AM

it doesn't make a big difference, i don't think? SOmeone else might correct me. It is when you become stage IV that it is different as that means it has metastised to other areas of the body.
Christine