Survival without Herceptin

[Lien]

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

[bashmaz]

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

[CLTann]

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.

[Montana]

No Herceptin for me either.

[Joannie]

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.

[PatS]

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

[emily]

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

[pattyz]

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

[dlaxague]

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.

[Carol H.]

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.

[ggweber_2000]

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.

[mcgle]

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

[AlaskaAngel]

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

[dejaboo]

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

[bashmaz]

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.

[lizm100]

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

Liz

[CarolH]

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.

[Sheila]

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?

[Carol H.]

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

[AlaskaAngel]

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

[mcgle]

As far as I know, all is well here, too.

Now two and a half years out, having received neither chemo nor herceptin for my tiny borderline HER2+/ER+/PR+ tumour.

Mcgle (UK)

[Jackie07]

I am thinking that if I had had mastectomy, I wouldn't have had the local/regional recurrence (caused by not getting enough margin in 2003) And back then my chemo was FEC - no Herceptin. I'll know Monday how my PET scan last Thursday looks like.

[atdec05]

It seems like many(most?) of the women here who didn't do Herceptin and have no recurrence were ER+ or PR+. I wonder how important that is to not recurring.

Congratulations on your survivorship!

- Anna

[dlaxague]

Just to balance it out, I'll report in as ERPR negative, stage III, no Herceptin, still here without recurrence 7 years later. See signature.

Debbie Laxague

[BEVIE]

I was DX Nov. 2000 at 49 yrs old. 1 1/2 cm. ER+ HER2+ (weakly) Nod. neg. lumpectomy, 2-CMF, 4-AC, 28 rad. 9 months Tamoxifen, 3yrs Arimidex. No Hereceptin (wasn't available) I haven't seen Onc. in 2 yrs. but I am feeling great.

[Lien]

I started this thread a year ago, and am still fine! Thank you to all who have replied. You've made me feel less alone on this forum where most seem to have (had) access to Herceptin, Tykerb and several trials.

Jacqueline

[Vi Schorpp]

I'm wondering why you don't see the oncologist? I did not have herceptin as it wasn't available....5 years later so far so good, but I see the onc every 3 months....

[Vi Schorpp]

Glad to hear that...I hope you never feel alone in this forum. Many of us did not have access to Herceptin when diagnosed early stage (I was diagnosed 2A 5 years ago). I always felt I was missing something, but I know I can have it as a second line of defense if and when needed. Take care of yourself!

[CLTann]

Just to re-affirm my NED status. Another year.

I asked my onc last week during the six month check up, whether my understanding of the recurrence rate versus time from first cancer discovery is getting lower after 18 to 24 month. He said that this was considered to be correct in the past. But a recent article showed that there is no reduced recurrence rate. He could not give me a more precise info on where this article is. If any of you happens to know, please post it.

That was a disturbing news for me. Otherwise, all are well.

Ann

[Becky]

Do NOT think of survivorship as time (ie: 18 months, 4 yrs etc), think of it as the journey of your life. Who cares if we have to wait 20 yrs to be deemed "cured". Are you really willing to wait 20 yrs of worry to think that cancer won't come back? And then what, a different disease condition? Nobody knows recurrence rates because 10 yrs ago there wasn't Aromatase inhibitors, taxanes, AC, dense dose, weekly treatment, TCH, Herceptin, Tykerb, Avastin, Tarceva, Sutent, Pertuzamab, vaccines, Imprexa, Gemzar, etc. So you see, what will it be in 10 yrs from now - 2 yrs from now? And, Herceptin (early) helps - but not everyone needs it to do well - not at all. Get your walking shoes on!

[Lien]

I'm not sure how old this info is, and it seems to come from a pharmaceutical company, but it does address the issue of recurrence:

http://www.lifeabc.org/risk_recurrence.html

Jacqueline

[Hopeful]

CLTann,

From what I have read, ER+ bc has a 2% per year risk of recurrence, that is additive each year, i.e., a person surviving 10 years has a 20% chance at that point. The risk of ER+ bc returning never goes away. Evidence from delayed hormone therapy trials and extended therapy trials has been positive to date, showing that hormone therapy can reduce this risk. ER- patients do have a drop off of recurrence after 5 years, which declines until 10 years, when the ER+ and ER- recurrence rates cross. The information was in the last quinquennial meeting results from the Early Breast Cancer Trialist Collaborative Group. This information, however, did NOT address Her2 positivity OR Herceptin - two variables that are very important to the outcome. I would not expect to see those kinds of statistics for quite some time.

Hopeful

[Unregistered]

Why did you opt not to take the Herceptin?

[Unregistered]

What is your reason for not wanting the Herceptin?

[bashmaz]

because back in early 2002 it was a trial and when I read and researched herceptin I was concerned about the number of people who took herceptin and then had brain mets as their first recurrence site. Also, the heart factor wasn't clearly understood back then, plus I didn't want to continue treatment for a full year after completing my standard chemo - it just seemed like enough is enough!

I'm fine with my decision as I'm now over 6 years out and doing fine. I did the UW vaccine trial in 2004 (which I wouldn't have qualified for if I'd had herceptin) plus I recently completed the tykerb/placebo trial (which I also wouldn't have qualified for if I'd had herceptin) - so it's an individual decision, oh and I'm also er/pr-ve.

Hope this helps
Marianne