Survival without Herceptin
 

Hi All,
I've been wondering how many of you never got Herceptin. Either because your doctor didn't want you to try it, or because it was unavailable to you for other reasons.

I was diagnosed in Jan. 2004 and at the time, Herceptin wasn't prescribed in the adjuvant context. I didn't get chemo either, as my tumor was tiny (o.6 cm) and I was ER+.

I did get Zoladex shots, to shut down my ovaries and Arimidex.

So who survived without Herceptin? And how are you now?

Thanks

Jacqueline

Hi - I'm 5 years out from diagnosis w/out Herceptin
 

Hi - I was diagnosed 4/2002, 1.8cm, 1+ve node, grade 3, ER-ve/PR-ve, Her2+++

I chose not to take Herceptin; did AC x4, Taxolx4, 37 rads. Did the UW vaccine trial back in 2004. Now I'm on the TEACH trial for Tykerb alone. After reading about all the side effects others taking Tykerb are getting, I'm assuming I'm on the placebo! - won't find out til the end of the trial in Feb. 2008.
I'm feeling fine.
Marianne in WA

My onc did not allow me to have Herceptin without chemo, so I didn't have neither. As you see below, I am doing fine so far. Of course, the next 6 to 12 months will be the critical period. If I am NED for another year, I consider myself in good "cured" class, like you. The chemo and Herceptin add the probablity of disease free by 5 to 10%, but their negative effects are troublesome in many cases.

No Herceptin for me either.

I was diagnosed in April 2003 and received 4 rounds of A/C and 4 rounds of Taxol. Bi-lateral mast. NED so far. I just signed consent papers to begin the TEACH trial. We'll see if I qualify over the next few days.

I was diag. July 2002 and finished chemo in Jan 2003. I never received herceptin either. Like Marianne, I am currently participating in the TEACH (Tykerb) trial.


Pat

No Herceptin or chemo
 

I was diagnosd in June 04 at age 52. Her2 testing was not the protocol in Australia then. My tumour was 0.8mm ER 10% PR -, 7/9 on Bloom Richardson. Only rads recommended + tamoxifin. Switched to Arimidex in Nov last yr and was tested for Her2 on IHC & Cish. Results IHC Her2+++ Cish 8.0. Onc said I should have been offered chemo but not necessarily Herceptin because of the small size of the tumour and the possible side effects.
Coming up to 3 yrs NED & like the rest of you hoping to continue this way.

Emily

Well...

In Jan. 2000, I was dx'd with Stage IIIb er+ pr- but not tested for Her2 status . Went to Mexico for all, as I had no ins. Only recvd 4 rnds of A/C. No rads because no more money.

Mets dx July 2002. Mediastinal node/s, surgical biopsy and was then found to be Her2+++, also spot on lung/pelvis. Tx was Navelbine/Herceptin for just 4 rnds when scans showed NED in body. I then stopped tx. Have not had any further Herceptin and have remained NED in body.

Brain mets in Sept. 2002 with two recurrances, including present.

So, I HAVE had Herceptin, but only four infusions 4 1/2 yrs ago, none at first dx 7+ yrs ago...

patty

Hi, good question. I was diagnosed in 2001, details in signature below. I desperately wanted Herceptin, which at that time was available for adjuvant use only in trials unless one was independently wealthy. I enrolled in NSABP B-31's adjuvant Herceptin trial and lost the toss - was randomized to the control (no Herceptin) arm. It was a hard blow at the time but here I am, six years later and NED.

Debbie L.

No A/C or herceptin for me. I'm at the beginning of my wait and see period. I'll save the big guns in case I need them later. Carol H., Fl.

As you can see by my signature. I never received Herceptin and am NED. Found out today I need Arthoscopic hip surgery to delay hip replacement and an angioplasty for blockages of my heart. May be due to the Taxotere or Genetic. But I am still NED for cancer. That's good news! To me all is well.

No chemo or herceptin for me, either. It seems there are quite a few of us in this particular boat.

Please read my signature.

Mcgle

Lost Regiment of HER2s
 

Count me in -- no Herceptin.

Dx 2002 1.6 cm IDC plus some DCIS
Stage T1c, no LVI
ER+/PR+, HER2+++
(Oncotype Dx not yet available back then)
CAF x 6, IMRT rads, tamoxifen x 1 3/4 yr

This is an older thread that I was glad to find. Any others that can add to it?

I'm still here - now 6 years no recurrence
 

Hi - yes, it would be good to hear from all the other no Herceptin/no recurrence people who replied to this thread las year. I'm sill doing well.

Marianne in WA.

Thank you everyone for responding. It makes me feel better about what all of my oncologists recommeded as my treatment plan.

Liz

Survival without Herceptin
 

No chemo- no herceptin , I'm 18 months out now and still NEDS. But believe me I think of it returning all the time. I know all of you understand that feeling. I visit this site everyday, usually lurking in the background, not sure what to say, just wanting to be with my sisters.
I would like to share a poem with you written by Katherine Von Ahnen ( I have a feeling she has cancer too)
Faith
I'd like to find a quiet place
Where I could talk to God,
To ask if I've been right or wrong
And see him frown or nod.
There are so many things of late
I do the best that I can do
In my own stumbling way,
And yet...I'm never really sure
Which path I ought to trod
So I'll just do the best I can,
And leave the rest to God.

I was diagnosed in 2002...small tumor 7mm, node neg, ER PR neg. .... No chemo, No Herceptin, Mets to the Supraclavicular nodes 1 1/2 yrs later...been in treatment ever since....and from the looks of it, always will be....being in treatment beats the alternative, but I wonder what it would be like to move on and not have my life scheduled around chemo every 2 weeks, or Herceptin?

I don't know what I did wrong in my last reply, but the Carol H. guest was me, Carol H. Florida

One more
 

Just checking in to provide perspective.

Another year gone by and no change here, either -- CAF and then rads as a T1c but no Herceptin, no dose dense, no taxane, and no recurrence.

AlaskaAngel