New to site: ER-, PR-, HER2+

cocacolakid2001 · 03-09-2006, 05:05 PM

New to this site but have so many questions. Can I start with asking for anyone with a similar diagnosis to give me some insight, any insight, into what my future might be? I'm very confused right now. I have a positive attitude about treatment but just can't help but think about "final outcome" could possibly be. I have a little boy that I so want to see grow up.

I seem to read so much about the "bad things" relating to other similar diagnosis to mine. As in I feel like I've been given the official "death sentence" I am halfway through chemo (FEC combination) and will start Herceptin, Carboplatin & Docetaxel next week. I seem to be finding more "bad" about the side effects of these drugs versus the people who are having a "good" reaction to these drugs (ie. side effects).

Diagnosed ER-, PR-, HER2+, stage IIIb, T2, N3c, Mx--poorly differentiated ductal carcinoma

Any insight would be very much appreciated!!

Christine · 03-09-2006, 06:09 PM

Coke
I welcome you to our support group. Please feel free to read our many pages and get familiar with our message boards. It will help you to know more and will be better able to not only speak to your oncologist, but also communicate on-line. The more you use it the better you are. Ask as many ????'s as you want; and for sure you should get other members to reply. We are a team, all sharing our good and not so good results. That means we try to give you confidence thru our own breast C ancer expieriences with Herceptin as well as other Chemotherapy. Herceptin is a wondweful gentel drug that works well with other chemo drugs. Other chemos can have side effects and if you give us your medical profile, I'm sure you will find someone here who would be glad to reply.

Hope you do't mind your nickname
also.....please register and e-mail us your picture if you would like.
Hugs ....Christine

Bev · 03-09-2006, 08:18 PM

Hi, welcome. I don't have the same diagnosis or treatment. It sounds like you're interested in statistics. You might try cancerfacts.com. I haven't been to the site for awhile, but I think you fill out a questionaire and then they direct you to studies that show relevant treatment outcome studies. It's tedious but...I guess we all have the same curiousity. It is a .com and not a .org.

Do come back to this site though, because after you read everyone's stories, you'll see you're not just a number. There are plenty of people doing better than their number would suggest. Good luck, BB

sherri · 03-09-2006, 08:23 PM

Dear new member,

My dx in December 2004 was very similar and worse than yours. First I thought I won't be around even for a year but then I learned they are many people who survived many years and Christine is one of them. I joined this group and found hope, knowledge and courage. Herceptin has changed her2 positive outcome a lot. You will be fine, just stay positive, learn from others and fight these terrible disease. We are the end of Brease Cancer! We will celebrate your son graduation from Univeristy, don't worry.
Big hug,

Lolly · 03-09-2006, 10:36 PM

Hi, and welcome to the board. It's so great you'll be receiving Herceptin as part of your adjuvant treatment! This should go a long way towards staving off a recurrence. Your docs are to be commended.

You are bound to be full of questions and fears at this point, but just try to focus on your treatment and on staying as healthy as possible during the process.

We'll always be here for you, but as to predictions that's never been something I've worried about since diagnosis, and I think you'll feel the same a year from now. Statistics don't really apply to us Her2'ers, we're too busy writing the next chapter!

<3 Lolly

cocacolakid2001 · 03-09-2006, 10:46 PM

Thank you all for your replies. I really do appreciate them. I had forgot to add to my initial message that I was two days short of my 37th birthday when I was diagnosed. Yep, happy &^%$# birthday was about all I could say there for a couple days, LOL!

I should also add that my name is Sherri (I haven't quite figured out how to change my username yet. Please bear with me.)

cocacolakid2001 · 03-09-2006, 10:54 PM

Sherri,
You say your diagnosis was very similar to mine, would you mind giving me a bit more info on what has happened to you over the course of your treatment? I am becoming really anxious about my next "blast" with the Herceptin, etc.--especially with it being spread-out over two days.

Sherri

03-10-2006, 02:35 AM

Hi Sherri. I am so sorry to hear about your diagnosis, but hang in there. I don't have quite the same diagnosis. I am stage IIIA, ER/PR -, Her2 +++. I was diagnosed less than a month after my 36th birthday and I have a 2 1/2 year old little girl who I feel the same way about. I get sick to my stomach thinking about the fact that I might not be able to see her grow up, but I will. At the beginning I read every statistic on the web and all I did was get sad. Then I found this website and read all the inspiring stories of these surviving women who are fighting this disease and winning. You will find a wealth of wonderful women and a lot of great information here. I really don't know what I would do without this webstie. They have helped me so much. If you have questions or need to vent this is a great place to do that. We all understand!

My onc told me not to read all the websites and get caught up in the statistics. Most of these statistics were written before the use of herceptin!
As far as the side effects, they effect each person differently. With the exception of a few minor ones, I have been able to live a fairly normal life.

Please keep remembering that you can win this battle and we will both see our children grow up and dance with them at their weddings!

Christine MH-UK · 03-10-2006, 01:46 PM

Hi Sherri,
I wouldn't look at the general stats at all, since your treatment is really cutting edge. I think that in the closest trial to it, which used adriamycin instead of epirubicin, an amazing 7/8 women with stageIIIB had a complete response, including knocking out any tumours in their lymph nodes. Adriamycin is harder on the heart, which is probably why your doctor has made the switch. This trial was presented at the San Antonio Breast Cancer Symposium in December 2004 and was carried out in California, but that's all I remember.

I found FEC really rough, but with a six-month old baby at the time and ER-,PR-,HER2+ cancer, I had to do whatever was possible, so it was 6 rounds of FEC (hard) and 4 of taxotere (easy) and now a year of late herceptin. I am still doing well two and a half years later, much to my oncologist's surprise, and my treatment was much less advanced than yours.

Best of luck,
Christine