Herceptin for earlier stages of her2 patients

tugs2003 · Regular Joined: 13 May 2005 Posts: 10 Location: Montana

Hi,
Has anyone heard from their oncologists regarding the recently completed studies regarding herceptin?

Mine just called me and I have an appointment to see her on June 6th.

I am in remission -- so I will have to decide if I want to try this as a protective measure................ I don't have details as of yet. i think she would have like to have us there now (she is 3 hours away) We own our own business (I run it) My hubby works for the city -- it is Memorial Day weekend/graduation/plus we are getting ready for a sale....

I think since I am in remission that it is OK to wait until the 6th.

Just curious to see if anyone else is looking at herceptin.

thanks
Debbie
_________________
45
dx 09/03
nodes 3+ of 22
stage IIB
er-/her2+
bilateral mastectomy
chemo/more chemo w/Taxotere
38 rad
Currently undergoing Herceptin treatmens

AlaskaAngel · Posted: Tue May 24, 2005 10:10 am Post subject: AlaskaAngel

The communcation between me and my onc has never been adequate, whether it is me that is the problem or him. But also, I am hundreds of miles from him and am seen and treated by my local internist, who consults with the oncologist. My doc is wonderful and very, very busy. I'm 2 1/2 years out from finishing treatment and I haven't seen an oncologist in over a year.

I am HER2+++ and never had herceptin. No one has contacted me. I raised the question about additional treatment for those like me in an earlier post here, but I think all of the oncs at the time were at the recent oncologist's conference and were just starting to receive more details about the news themselves. More information is yet to come for them and us about the details of the new information.

So far, the ONLY information I have seen about women in our situation has been from other women posting about their visits with their oncologists. These women are being offered the option of taking Herceptin now.

Because the outcomes in the study groups were significantly better for those who received chemotherapy at the same time as herceptin, I want to know if there is going to be a clinical trial to demonstrate whether women who originally had chemo that did not include herceptin get better benefit from having some kind of combination treatment with chemo AND Herceptin, rather than just starting Herceptin now.

We need to be told what is known and what isn't, not just to be advised about a single option (such as adding Herceptin alone now). If no one knows, then more information needs to be gathered to give us the best advice possible.

Since the study groups only contained those who had never been treated for breast cancer, that group also differs from those treated some time ago in that a number of those treated with chemo regimens and no Herceptin have been taking tamoxifen, or an AI, or a sequence of these medications. So that too may need to be dealt with through the process of additional clinical trials.

But silence is not the answer to these questions.

AlaskaAngel
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

Madge · Regular Joined: 27 Dec 2004 Posts: 27

Here is the website for herceptin. it's supported by Genentech who developed the drug so it might be a biased in it's information. According to genentech's website herceptin is being studied in early bc as adjuvant (preventative) therapy. The studies are in phase III which is the last phase before they submit their data to the FDA for review. I don't know how long the study has been ongoing but it may mean more conclusive evidence about it's effectiveness in treating early bc within the near future.

http://www.herceptin.com/herceptin/index.htm

Be well, be happy.
_________________
Madge
61-years young
Dx - 7/04
Bilateral Mastectomy (skin sparing) 8/19/04
Negative nodes
Micro-invasive DCIS, DCIS, LCIS
Stage T1a
ER/PR -
Her2 3+
No chemo, no radiation
Waiting for reconstruction

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hi Madge,
I am also HER2+++ and have not been contacted by my doctor. I am insterested to see what will happen. Like Alaska said, I wonder if there will be a study for women like us that were not offered Herceptin at the time of chemo. I am two years out since my dx and I am not sure I am ready to do any more meds. One thing to be careful about is that Herceptin is not without side effects. It can cause heart damage and I am a very athletic person and a personal trainer so I am not sure I am willing to put myself on the line. (I know someone who did get heart damage from the Herceptin) Although, if it really carries a high rate of protectiveness for reoccurance, I guess I may do it. I will be calling my oncol in a few weeks to ask her, my visit with her is not until August.
I have always wondered why I was not given the option of the added herceptin at the beginning, but everything happened in such a whirlwind I didn't even know to ask. I hate the fact that my oncol (at the time) did not even tell me about being HER2+++ and what it meant.
Lets try to keep this subject active, as I think its important to all us HER2 + ladies.
Kristen
_________________
Dx 3/03
43 yrs old
Invasive Ductal
1/14 + nodes
lumpectomy 1.6 cm
3 sugeries for clean margin & nodes
A/C & Taxol Dose Dense with daily Nuprogen
38 Rads
ER+/PR+
Her-2/neu +++
Stage 2
Tamoxifen 19 months
Treatment Finished 12/30/03

AlaskaAngel · Posted: Sun May 29, 2005 9:35 pm Post subject: Herceptin question

Kristin,

One thing I can tell you for sure in the truest sense of what being a nurse is; modern public health at a minimum should now include determining the most accurate clinical test for HER2, and then offering it to those diagnosed with bc; and then requiring that the results be given to the patient along with a standardized informative handout explaining the importance of being tested and what treatments there are for it. Anything less is not modern public health. I hope the field of oncology is up to setting that minimum standard.

One wonders if those of us who are HER2+++ and who were never offered Herceptin are supposed to just die off?
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

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