Is Herceptin for me?

Dejaboo

Is Herceptin for me?

Dejaboo

I just got back from seeing a 2nd Onco.  When I last saw my 1st Onco my Her2 was not in.  Today it was in, Im Her2+ (FISH)

I have not read alot about Herceptin yet (the nurse on the phone last week told me my Her2 Was Negative- I dont know where she got that info- Onco said results werent in)  So I was thinking it would really come back Negative.

I am Stage I.  Not thinking Chemo because of my Tumor Size 1.2mm...So is Herceptin really a choice...From the 3 minutes I read so far its for Stage II or III  or  if I were to take it with Chemo.  Is this right?

Thanks for any input

lisa39

Hi there,

My understanding is they don't usually give Herceptin unless you've had chemo first.  Sometimes they will recommend chemo even if you have a tiny tumor - like yours.  If it's highly aggressive and HER 2 positive and if you're young, they'll still recommend chemo.  I'd read up as much as you can on HER 2 positive BC and try to get a bunch of questions ready for the next time you see your oncologist.  There's a lot of good info on this site if you go back to the home page and start a search from there.

Dejaboo

Hi Lisa,

  Thanks for your Reply.

I am having a hard time finding any much on Herceptin for Early Stage cancer & used alone.  From what I found here...It can be used alone...But I cant find any info about its Use alone.

~~~

This is what I found on the site here:

"Herceptin is currently approved by the U.S. Food and Drug Administration for:

• women with metastatic HER2-positive disease
• women with earlier stages of HER2-positive disease as adjuvant treatment (treatment after initial treatment, such as surgery) either alone or as part of a regimen with chemotherapy"

Sassa

The information posted on whatever site you are quoting from is inaccurate.

When you check the original FDA approval for the labeling change for use of herceptin in early stage breast cancer, the approval reads for use of the herceptin as part of the regimen in chemotherapy (usually given with Taxol or one of its variations at first and alone after the Taxol is finished) or alone AFTER an anthracycline based chemotherapy.

In my case, I had AC chemotherapy and then received a year of herceptin (without any other chem drug) for a year.

mimi1030

In 2004 my mom was stage 1, with .5mm IDC.  She is her2+++, she was not able to get herceptin as it was only for mets patients which she wasn't, she did get chemo.  However Sept 07 she was dx with mets to liver and bones.  So, it may have served her well to get Herceptin back in 2004 when she had the early stage cancer. 

She is curently on weekly taxol/herceptin and monthly zometa.  They are doing good stuff, killing the cancer.

Dejaboo

I got the above Quote  copied & Pasted it  from THIS site (breastcancer.org).  When I looked Under  Treatments/ herceptin.

Sassa

Dejaboo,

I understand that you received the information from this site.  The information, however, is inaccurate.

Here is the information straight from the Genentech labeling for adjuvant (early stage) therapy with herceptin:

ADJUVANT SETTING

Herceptin is indicated as part of a treatment regimen containing doxorubicin, cyclophosphamide, and paclitaxel for the adjuvant treatment of HER2-overexpressing breast cancer. Herceptin is indicated as a single agent, for the adjuvant treatment of HER2-overexpressing node-negative (ER/PR-negative or with one high-risk feature) or node-positive breast cancer, following multi-modality anthracycline-based therapy.

Dejaboo

Hi Sassa,

  Thanks for showing me this Paragraph from the adjuvant site

I dont understand all that it says:

"Herceptin is indicated as a single agent, for the adjuvant treatment of HER2-overexpressing node-negative (ER/PR-negative or with one high-risk feature) or node-positive breast cancer, following multi-modality anthracycline-based therapy."

Can you explain what it means?

Im trying to also find info where it is used for Early Stage BC- or something that might tie into my Diagnosis.

I just got the call that my Insurance company will not pay for it.  Im so upset right now.

If I have Chemo with it- They may cover it. 

But most Oncos would say no chemo for me with my Stage/grade & Tumor size 1.2mm, node negative.

Dejaboo

Ok, Here is the defination of adjuvent therapy:

adjuvant therapy (A-joo-vant THAYR-uh-pee)

Treatment given after the primary treatment to increase the chances of a cure. Adjuvant therapy may include chemotherapy, radiation therapy, hormone therapy, or biological therapy.

So in my case I have ER+  So what would make my one High Risk feature ?

I still dont understand where it means chemo must be given with...In the definition it says it may Include  Chemo, Radiation, Hormone therapy...Etc.

I was planning on Taking Zoladex (Hormone)  And Herceptin-Isnt that Adjuvant therapy?

Sassa

The high-risk features for node-negative patients include tumors that are hormone-receptor negative, grade 2-3, or greater than 2 cm in size, and patient age under 35.

Unless you are under the age of 35, I don't see anything in your dx information that fits into the high risk features.

In my case, I am ER/PR- and grade 3.

While the definition of adjuvant may include all the treatment modalities you mention, the approval for herceptin is restricted to use with the adjuvant treatment modality of chemotherapy. 

Dejaboo

Ok,

  Thank you for explaining that to me.

All the High risk features you mentioned are the reasons I am not a candidate for Chemo.

But being Her2 Positive makes me a Candidate for Herceptin- Which was approved for Early stage BC 2 years ago.

Thats why its so confusing. 

LisaKJ

Hi all, just located this thread after finding out that my DCIS was ER/PR neg but Her2 pos. 

I believe I understand who's a candidate for herceptin, but my (maybe stupid) question is...why aren't all of us with the Her2 pos gene candidates for the drug, regardless of tumor grade?  

Thanks for the info.

CindyB

Per my oncologist, herceptin is an option regardless of grade, node status, size of tumor, because HER2+ is a negative characteristic in itself.

Dejaboo

Thats what my Oncologist says too.  But she also said To do it without Chemo.  Which I think sounds good.  But I cant find many who have taken Herceptin without Chemo....Looking for some feedback

And My Insurance doesnt want to pay for it without Chemo

bunk

I was diagnosed at age 30 with stage 1 IDC, I was ER+ and her2+++ and they didn't give me Herceptin OR chemo. My tumor was 2 mm. BUT this was in 2004.

AlaskaAngel

Hello,

Here are the 2 links to the recognized physician-based organizations that show what the standard is:

Source #1

http://www.medscape.com/viewarticle/562248_7

"The judgment required in advising such patients on the addition of chemotherapy will involve many factors of risk assessment, degree of endocrine responsiveness, and patient preference. No absolute rules can be defined for this decision which remains a matter for discussion between each patient and her treating clinician."

http://www.medscape.com/viewarticle/562248_Tables#T3

and

Source #2

http://www.nccn.org/patients/patient_gls/_english/_breast/3_work-up.asp

That said, basically treatment is a negotiation between you and whatever oncologist you choose to see. There are oncologists who are providing trastuzumab (Herceptin) without chemo, usually to patients who are either too elderly or have other medical conditions that make chemo very difficult for them. There are also some who have made it clear to their oncs that they will refuse the standard therapy (chemo) regardless, and who have then been offered trastuzumab and likely either tamoxifen or an aromatase inhibitor.

A good site for info for HER2's is her2support.org

They have a forum there for the newly diagnosed also.

-AlaskaAngel

Sassa

The approved use for herceptin is in combination with or following chemotherapy.

An oncologist can offer his or her patients herceptin without chemotherapy in what is called "the practice of medicine."  In other words, using a drug in his practice outside the approved labeling.

However, an insurance company most likely will not pay for an unapproved use of the drug (in this case, using herceptin without chemotherapy).  This leaves the patient to pay for the drug out of pocket.  At a little over $142,000 (based on my insurance records) for a year's treatment, that is a pretty big out of pocket expense.

SusieSwan

I was diagnosed last year, 41 yrs, triple +, Stage I.

Ended up with 4 A/C, followed by Herceptin every three weeks and Tamoxifen.  2nd onc also advised Taxol but first Onc said would be too toxic but said, absolutely Herceptin.

Susan

Dejaboo

Thanks for all your replies!

AlaskaAngel-Ill go check out those links.

JoniB

Dejaboo - I could not find a doctor who would give me Herceptin alone.  Now that I know the out of pocket price of taking this drug without chemo, I could not have afforded it anyway.