Topic: please give me accurate information so I can breathe again...

Digid,

The fact that you are HER2+ qualifies you for the anti cancer drug Herceptin. 

Please try to watch the movie "Living Proof". It is the story of Herceptin, the doctor who discovered it, and women with HER 2+ cancer who went through the drug trials to get it approved for cancer treatment. It is a wonderfully uplifting movie.

I too am HER2+ and I thank God for Herceptin, even though I was scared to death to have to take it due to the side effects that I read about. I had a panic attack about that!  I am 2 weeks away from my last Herceptin infusion, all the side effects that I feared didn't come to pass. Sometimes  we can be our own worst enemies.

I was like you, I looked everything up and it seemed like each time I did I came away with more worries and questions and anxieties than ever. My husband would be very unhappy that I would do the research only to get more and more discouraged. My advise to you is this; talk to your doctor about every doubt and question you have, take one day at a time, this time in your life will be easier to get through when taken one step at a time, be easy on yourself , and trust that you are stronger than you can ever know. You will amaze yourself!!!!

Stats don't yet include Herceptin, which is our Her2 positive miracle drug. Our prognosis is now as good as Her2-, if Herceptin works for you. Apparently it did for me. I am now 3 years out from dx, and they say for us the first 2 years are the most likely to see a recurrance.

People will tell you not to look at the stats. I think it's good to be informed, just remember the current stats are based on info that's up to 10 years old.

Digid, our docs sometimes put a positive "spin" on things for us, but they will not outright lie.

Trust your doc, not the out of context, out of date stuff you find on the Internet. Most of that information is so easy to misinterpret unless you have a medical degree yourself. 

Herceptin is da bomb. And it is only 1 of a series now of drugs that are used against HER2 positive disease. Some of them are still in trials, though they are late stage trials.

HER2 USED to be a bad diagnosis. There is now an arsenal of great, effective drugs to fight it.

I'm also stage 2 ER-/PR-/Her2+, and although I have nothing to add to the wonderful advice above, I wanted to stop in and say, "Breathe." After my surgeon gave me the path report news, I remember turning to my poor husband on the way home and saying, "You realize she just gave me a death sentence?" OK, here I am almost two years later - feeling great and thanking God for Herceptin.

As Linda told you, you will be OK. And we'll be here for you every step of the way.

I was Stage 4 from the get-go with liver mets. My liver had a 9cm tumor and numerous 2cm tumors throughout.  I remember very well hearing at a BC conference in January 2004, that the chance of my living for 5 years with liver mets was 5%.  I cried all of the way home.

But I went on a clinical trail of Gemzar and Herceptin and 9 months later my liver went into remission.

It has now been over 5 years remission for me, and I will be on Herceptin for life.  It is a true miracle.

The stats are now totally wrong thanks to the new monoclonal antibodies, which, hopefully will soon replace chemos.

Denise

I remember being one of the first few patients with stage I, was given Herceptin in September 2005.

They really didn't know what to expect from me, in a long term. I'm still here and very grateful to my doctors and the hospital I received the treatment starting with my first dose of Taxol and continued for 52 weeks, once a week. (The Herceptin not the Taxol)

I see Linda was also DX the same time as I.

Good Night Ladies

 Sheila

Digid...I agree with the others...my surgical oncologist said Thank God you are Her2+!  After the things I had read, he had some 'splaining to do.  My medical oncologist went one step further and said that with all of the success they are having with Herceptin and other new things in the pipeline, Her2+ is a good thing to be!  I'd rather be none, thank you, but I do believe those negative stats are dated, numbers taken from before Herceptin was an option.  They tried a couple of years ago to do a Herceptin/Non Herceptin study to get some comparative data, but stopped it because they saw such a benefit that they needed to give the non-Herceptin women the drug.  So, stats stay dated,  By the way, I think most people feel the same as you about the chemo.  While we hate the idea, we like just getting it going.  I think you'll find it is NOT as bad as what you are afraid of....and it DOES feel good to be doing something about the cancer, no matter how unpleasant that something is. 

Sherri, I had to have the fish test as well. It's more accurate the the reg IHC " Staining" test. They do  the fish when the first test is  borderline for overamplification.

Just stopping by to say breathe.  I'm happy to say I have not evidence of disease since completing Herceptin in March 2006.  Try not to believe everything you read on the Internet during treatment and ask lots of questions of your doctors, nurses. 

Good question.

 I think some studies have been from date of diagnosis & date of finishing chemo (ACT or TC). Correct me if Im wrong.

HES112 - in the MD Anderson retrospective study of women who didn't have chemo, they used time since diagnosis. In BCIRG 006 and I think most studies of chemo, they used start of chemo. I think treatment studies usually use start of treatment or the date of randomization which is usually about the same.

THANK YOU, THANK YOU HER2+ cancer ladies!!  I had my first TCH chemo on Nov 4th and have since researched and felt like I was a dead girl walking.  Very scary as I just turned 35 and have a 4yr old and 6 yr old I NEED to see grow up!!  I feel much better knowing all of your stories and will rent that movie about the Herceptin doc.  I feel much better and ready to breathe again.  You are all very inspiring!!!

HES112-

My first treatment was okay - had 3 days of bad stomach issues but mostly just felt like I was pregnant again.  I now have a bad cold from my son but if I did not have this cold I would feel almost normal.  I still have my hair and know my days with hair are numbered....I have 5 more chemo treatments to go.  My next is on the 25th.

Just wondering about rads for you - no nodes and a small tumor and you still had rads??  I don't know yet if I will - need to see a rad oncologist.

I told my family about the movie as well and we plan to watch together.

Take care!!

Like some of the others, I was also dx as stage IV from the get go and herceptin has been very good to me!!  It has kept my lung mets in check since last year.  There is always hope and I want to let you know I have read many stories of women who are living long and wonderful lives despite being her2+.  There are new drugs on the horizon so the future is indeed bright for us :> 

I also have brain mets, but I had them zapped with SRS and I am clear.  I take tykerb along with herceptin to help fight any future stuff up in there.  Although I have lung and brain mets, I work full time and just got back from a vacation on the East Coast.  I haven't missed a day of work, and get a little more fatigued that I used to but I live a full and wonderful life.....even with stage IV and stuff in my noggin!  

As the others said, the statistics are all old and do NOT include us.  I stay away from reading about the statistics for people like me and instead focus on the women who are still around 10 years later because that is what I plan to be....around in 10 years reading your posts!    Best to you!!  lisa