Falling Apart Today - Need some positive outlook

 Hi Ladies , and HER 2 pos sisters. I posted this back in May under the stage III forum. I am now 5. 6 yrs out and happily NED. I too was one of the first to go on Herecptin when approved for non metastatic dx  I  come on these board rarely, but always at thie time of year. I hope my story will uplift you. There are many joys ahead for all of you. God Bless.

Ok, so today I declare I am 5 years out. ( my actual date is in 2 days, but I plan on celebrating BIG time and probably will be in no shape to post anything legible)

anyway, this is particularly for you new ladies, ones that are dealing w/ the sucky side effects and those who are on the roller coaster of emotions( anxiety, fear, fear anxiety, etc. etc.) in this journey;

I rec'd my diagnosis, by Fax!! yep. 6 week before my wedding to my prince ( truly I kissed many frogs in my life), anyway, took the next flight out and was sitting in my Mom's Oncologist office the next day ( my mom had  recently passed from met. BC)  the thought was I had a small slow growing tumor, and no big deal, lumpectomy,  some chemo , no biggie.

ah.... but no I had  a particulary ( bad ass tumor - so said my surgeon) 12 pos node with extension  lymph and vascular invasion,ER PR negative , CA in ducts , lobes and Pagets of nipple.and NO clear surgical margins after my mastecomy. Oh yeah and the cherry on the cake was I was Her 2 pos! They satge me at StageIIIC , but by a hairs breath. Me  being a nurse and having done  Onc Nursing took a nosedive and immedaitely went on Xanax ( Thank God )

I am here to tell you all, I am well and kicking A**.  I married my love after many many yrs,   have my own businness, have seen a new grandbaby born,and am living large.

  I do  torture my breast surgeon  at each visit( he  didn't think I'd   make it, so I tease him about  his receeding hairline , Chemo head" )

 Those

who were insensitive, uncaring or just plan mean  don't have a place in my life now. 

It's probably the only " good thing" about this whole deal, is prioritizing  is really clear to me now.

 I know you all are scared, but try  take  each day as it comes. The worry, anxiety, does dissipate with time. Every ache and pain will eventually be just that.

Be kind to yourself. We are nuturers by nature, this is the time we need for ourselves, take it.  

For those who wonder where the other stage III's are , we're out living. There are much more of us then over before.

For the oldsters, lexi, Janie, Sherri, Bugs, Linda Lou,Yatcow,

You sound just like I did when I was first dx'd in October 2001 at age 45.  At that time, there was nothing and I mean nothing good about being HER+++.  Very little information was available.at that time.  Only about 25% of us are HER+++ so when I started out there were only 3-4 of us on the boards!  When I was dx'd in 2001 you only received herceptin if you were Stage 4!!!  I was Stage 2 so did not receive herceptin - only AC chemo.  Finding long term survivors was next to impossible and I tried!  But keep in mind they had ONLY started routine testing for the HER oncogene around 2000.  There were no stats. And I was extremely anxious.  Now there is board specifically for HER+++ women and it has lots of long term survivors.    

Low and behold....here I am 9 years later...and never even got herceptin!  There is HOPE!!! 

Debbie

Heather,  I still remember the fear and anxiety I experienced and desperately tried to find long term survivors to give me hope.   At the http://her2support.org/ site you will find lots of survivors.  Granted many are Stage 4 but they have survived for a very long time (many > 10 years) and are treating breast cancer like a chronic illness.  Some of the ladies were among the first to receive herceptin.  There is always hope!  You're going to have bad days...just realize it is what it is...a bad day and it too will pass!  Look forward to hearing you share your story in 10 years!

Did any of you see the post on the Stage IV site? Definitely go and read it..it is "My great week and some Her2+ encouragement" It sure made my day.

Ladies,

It is important to remember that even if you do have a recurrence after herceptin, there is tykerb.  I finished my herceptin and had a small recurrence, but now I am back on herceptin and I also take tykerb.

I think when I first started treatment in 2008 nobody talked about tykerb and now it is quickly becoming that standard of care for women who experience recurrence after herceptin alone. 

I will take tykerb (orally) for one year and then will continue with herceptin until ?????  Tykerb is so new that there are no stats on it for early stagers.   Like someone here said.....for Her2+ there are new drugs popping up that are not as aggressive as chemotherapy.

These two drugs are miracle drugs for Her2+ women.....stay strong.  I know I am....smile. 

Heather,

I am 4 years out - Oct. 16, 2006 was the day I went in for a breast reduction after having a clean mammo and breast ultrasound in July 2006 - my plastic surgeon found my 1.7 cm. tumour ... talk about a shock.  My tumour was send out 3 times for testing because I am triple + quite rare for us Her2+ers.   Breast MRI before the mastectomy found another 1 cm. tumour in the same breast - I went through chemo and my year of Herceptin - I met Dr. Slamon at a conference here in Toronto this past March - the man is a saint. 

We are very very lucky to have Herceptin - the stats for Her2+ BC are being rewrittten - WE are the stats... you'll be okay.

First time writing...  anyone been on Herceptin who had to stop because of heart not pumping efficiently?  (MUGA)   Am very nervous about this.  I hear it is the wonder drug, but do I continue and risk heart damage/failure?  I am only 42, don't smoke........  Curious to see what my onc recommends.  Any thoughts?

Thank you,

Laurie

I started Herceptin in February 2009 and still continue to take it every three weeks. My echocardiograms (done every three months) show a consistent decline in my ejection fraction. Last one showed I am down now to 50-55%. When I started it was at 65%. If it goes lower my Oncologist said he would stop it which would be in January when my next one is due.

a quick question about Herceptin- they gave me an echo before, but usually how often am I going to be getting these echos to monitor my heart condition with each treatment? I forgot to ask my onc

Lee,

Thank you for posting.  For those of us still in treatment it is VERY good to hear from you.

Hugs,

Anne

My oncologist, who is a very good doctor who gets wonderful results and is an active editor of one of the best oncology textbooks worldwide, was absolutely *thrilled* than I am Her2 positive so he can use the taxol/herceptin combo and then herceptin as a maintenance drug because the results he is seeing are just so good.

PaminWV,

So glad to hear that...I was placed on Taxol and Herceptin for 12 weeks and then followed with Herceptin for the full year every three weeks...have you heard anything specific about the results your Dr. commented on?  Hope

Starella - from what I hear, if people do have to stop Herceptin for ejection fraction levels, some restart just fine after a few months and others don't go back on it again if their doctor feels no need to. I guess there is still debate whether Herceptin for a full year is necessary, and since my year will be up in February - maybe I have received enough of the drug. If anyone knows more specifics on that I would be interested in hearing about it.

My doctor, Dr. Brian Czerniecki published a paper about this. They found that sometimes that herceptin caused changes but they went away after the treatments were done. In short, there was no permanent damage.