Her2 Positive with Estrogen negative Surviors Stories wanted:

Hi Deb:

Read the her 2 roll call thread below this and you'll find lots of her+, hormone neg thrivers!

I'm one -- dx stage 3a May, 05. Completely recovered now and doing great.

Annannne

PS. Let me know if you need more specific info or encouragement.

Hi Jen,

 I am Her2 +++ pos and er/pr neg. I was dx 11/2004 with IDC 4 cm and 1 positive node. I am doing great, am NED, and finally working on my recon. I did AC&T, MRM, rads, and nearly 2 years of herceptin (long story).

 There is not much good news in the literature regarding her+ patients so stop looking. I know I scared myself to pieces when I got my diagnosis!

What you need to keep in mind is that with the new treatments (herceptin and tykerb) the picture for us has improved dramatically and the literature has not had the opportunity to catch up yet.

Hang in there,

Bev 

Hey Beth, Well I'm another, I had herceptin as a trial drug with my original dx.  I was part of the original clinical trial. I had it for 1yr every week. 4 1/2 yrs later mets to the lungs. I had a/c taxol , bilateral, raditation, tamox, and of course the herceptin,. I'm er/pr++++and her2++++ way off the charts doc says. Went back on herceptin again with different chemos, for the last 2 yrs, and I am now in remission. I will stay on herceptin (hopefully forever) I will receive it every 3 weeks now instead of weekly. for me, I think herceptin is the key ingredient in staying ned. Wish I had stayed on it after the trial , but that wasn't part of the protocol then back in 2000. I've never had a security blanket before, but I sure do now, and its herceptin. Take care and stay healthy  KLynn  (by the way loved your speech)

Hi Deb,

I am one of the survivors whose cancer was HER2 +++ and ER/PR-, diagnosed almost 2 years ago. I think I am one of the few girls with a HUGE 13 cm tumor and numerous positive lymph nodes ( the biggest one was 6 cm), but after 2 years from the day I've heard that I have cancer I am still here and NED. I had neoadjuvant chemo (A/C , followed by Taxotere/Herceptin), then mastectomy and radiation. After 3 cycles of chemo my tumor was gone and the pathologic report indicated no cancer in either breast tissue or the 12 nodes taken out. So there is hope for us too. Herceptin is a miracle drug and now NeuVax looks very promising for treting HER2+++ breast cancer.

Calipso

Wow, Calipso! Thanks for sharing! That is an awesome response to your chemo and herceptin txs!! WooHoo!!! I am so grateful for the herceptin.

I was diagnosed two years ago in August w/ stage IIIb bc. I had a/c then taxol and herceptin began after my 1st taxol tx. I had to take a break for about 4 weeks with some heart issues, but was able to restart and finish out my herceptin txs. 

Lexi

Count me in too. My tumor was 9cm, I had two positive nodes, 2 years ago in Sept.

Back to life, back to work and about to be two-breasted again.

Herceptin does appear to be giving more of us a better chance.

Fists up! 

Mary-Anne 

Deb,

Coming in late with Kim.  I was diagnosed April 3, 2006 at 39.  4.5 cm tumor, 2 satellite tumors.  Neoadjuvant, dose dense chemo, 4 a/c, 4 taxol and herceptin, mrm, snb, 37 rads, 1 year of herceptin.  Complete pathological response at surgery !!  Yeah!  NED, now.  Also have 3 young, very active children! The targeted therapies are amazing now!!

Beth 

Count me in this group.  I'm her2+ and er/pr -

Diagnosed in May 2005, lumpectomy, axillary node dissection (1 node with traces discovered in SNB during lumpectomy...no other node involvement).  2 cm. tumor...did 8 rounds chemo, 30 hits of radiation, 1 full year of herceptin (which finished in May 2007)...and I am currently NED...living and loving my life.  Taking it just one day at a time.

Maureen,

Being Her2+ is far from an insignificant finding! Thankfully, knowing you are Her2+ allows you the ability to take a drug called Herceptin for one year. Those who take herceptin are 52% less likely to have a recurrence than the women who do not take it. It is truly a miracle drug and one that all Her2+ women should take, in my opinion.

Definitely talk with your Oncologist about treatment and how Herceptin will come into play in your treatment plan. Demand the drug if they are wishy-washy about it. It is a life saver, I promise!

Good luck

Kim

Hey ladies,

Count me in.

Dx 3/11/04  /   HER2+++  /  ER/PR negative  /  grade 3's /              7 positive nodes with one as big as the tumor and two wrapped around the supraclav /   Stage III

Lumpectomy and double breast reduction

AC/Taxol/Followed by Herceptin

RADS

Over 3 & 1/2 years out still dancing with NED

May we all dance until we die at age 100 from all the dancing!

Love and hugs to all,

Janie

T1a, N0,M0, maste. on May, 2006. Tumor was less than 3 mm., no chemo, no rads, no herceptin. I was told by 3 different drs. that my not having chemo has no effect on survival.  So, I count myself lucky, and move on with my life. ( Also have been told by one person I just had "a little cancer" and to move one, but that's a whole other story!!)

I too am not secure with the word "survivor" yet, but getting stronger each day.  I'm NED, so life is good right now!!

May you continue in good health.

Hi all ,

I am out of treatment now. The docs had to stop my Herceptin infusions after only 4 months. Anyone know of anyone that has had to stop taking Herceptin?

 Mother78,

The initial chemo was not that bad for me.  Taxol and Herceptin were another story but I am the exception. If your mom wants 10 more years encourage her to do the chemo and Herceptin. It is not overkill. This is one of the deadliest breast cnacers out there and is very aggressive. Without treatment I would think 10 years is a stretch. I encouraged my father in his 80's to get the treatment for prostate cancer and he is still with us in his 90's. 

I can tell you the problems that I had with Taxol adn Herceptin. They are possible side effects but they are not common and are usually temporary. With Taxol, I had peripheral neuropathy which is nerve damage commonly associated with a lot of diabetics. With Herceptin, I had congestive heart failure. Once the treatment stopped my heart function has resumed normalcy, but I still have neuropathy. 

I hope that you help your mother thru this horrible diagnosis. 

Good luck to all of you survivors.

The way that I understand breast cancer.... 

Before herceptin, Her2+ killed a lot of women so please get the treatment. Neuropathy is a terrible side effect from Taxol, but it is doable. Believe me, I am 49 and I was suicidal just contemplating the surgery that I had to have. So if I tell you it is doable, you can rest assured that I am not trying to sugarcoat it.  I have trouble moving around every day, but I know a lot of women that have taken Taxol and never had the neuropathy.  I take Neurontin/gabapentin daily for the neuropathy. Some days are better than others. My oncologist doesn't even know how to treat the ongoing pain from the neuropathy. She has never seen someone get it like I have it. But then, I had every side effect known to man. 

Hormone positve cancers were the first ones that doctors could actually treat effectively.  Since Herceptin was developed, Her2+ cancers are now treated as effectively as hormone positive cancers. Prior to that, due to the aggressive nature of the cancer and the lack of treatment for it, many women died. Today, the hardest cancers to treat are the women who are triple negative. 

I had no positive nodes and prior to my surgery my tumor had completely disappeared due to Adriamiacin/Cytoxan  chemo prior to surgery.  I still had to take the Herceptin and Taxol afterward due to the aggressive nature of this cancer.

I hope this helps.

Unfortunately, I am not one of the lucky ones~I am Her2 +++ but just dx'd with brain mets.  I had 4 AC's, 4 Taxotere, 36 rads, one year of Herceptin and 3 months after finishing that, I got the mets. 

I hope all the Her2 gals get great results~