Herceptin Dilemma - Input Appreciated

[BubblesMom]

I'd really like some input from her2 group members on my situation. Here goes:

I'm hormone negative (estrogen and progesterone) and "borderline"
HER2 positive (I'll explain later). I was diagnosed 12/28/04 at
Stage II with IDC, 2/10 lymph nodes positive and I'm 41 yrs old. Completed 4 A/C, 4 Taxol treatments. Currently, in 4th of 6 wks of radiation.

My oncologist and I have discussed herceptin treatment. Initially, I
thought it was a no-brainer. "Of course, I want herceptin!!!" Well,
now the decision isn't so clear...the women for whom herceptin was
such a resounding success have very different situations/variables
than me. The women in the study received Herceptin w/Taxol every 3
wks. I've concluded chemo w/a dose dense protocol (every 2 wks). I
received chemo at Johns Hopkins (one of the sites of the study) and
my oncologist told me that there was 1 death in their study, a
middle-aged black woman (I'm black). The patient died due to fluid
buildup around her heart...and this was WITH the quarterly heart
monitoring. In addition, the fact that I'm not a strong positive
(FISH score=2...score determined to be postive if > 2) adds to my
dr's feeling that there is no way to know if herceptin would even be
effective for me. Other questions I had could not be answered since
the study data has yet to be compiled. If I elected to move forward
w/herceptin, the treatment would be every 3 wks for 1 year with the
possibility of heart/lung damage.

Any and all input would be sooo appreciated! Just want to make sure
that I'm considering everything while trying to make this decision.


Denise

[eric]

Denise,

My wife, Caryn, and I went through a similar decision when she was diagnosed with stage IIIA bc October of '04. Based on the info we had at that time we decided to go with dose dense rather than the standard timing plus herceptin. Unfortuntely the cancer did spread but thankfully she responded exceptionally well to the herceptin and chemo (Gemzar) and is currently NED (no evidence of disease). I spent many hours thinking "what if" but realized that there is no right or wrong answer based on the information that we have and the "what if's" therefore do no good. As a result, my only advice is to do your homework, make an educated decision and don't look back.

Warmest regards,
Eric

[*_Julie_*]

Eric,

Did your Caryn took Herceptin for a year after dose dence chemo? When did she recurr after chemo. I was also diagnosed at the sametime as her sept 04 and took dose dense with out Herceptin and one year Herceptin after chemo.


regards,
Julie

[michele u]

Bubblesmom,
There is also another way to check Her2 status. It's called FISH. It's a little more reliable. That will give you a number also. Most women that are positive will be around a 5. I was 10, meaning i had alot of HEr2 receptors on my cancer. THe higher the number the better the Herceptin works(they think) It is your choice but i took Herceptin AFTER taxol for a year in study and mine has not recurred. I had 34 positive nodes. It must work

[Lolly]

Denise, there's a test that can be done at the start of Herceptin treatment to establish your baseline levels of Her2, then the test is repeated as treatment progresses to see if the treatment is effective. Here's a link to an earlier post from Tom regarding this test; it's something to consider if you do decide to go forward with Herceptin...Lolly

Bayer HER2 SERUM ELISA
http://www.her2support.org/forums/index.php?showtopic=21796

[mts]

Hi Bubblesmom-

I began Herceptin 4 months after my dose dense chemo and 1 month after rads. Would have preferred to receive it sooner, but no one wanted to give it to me.
Your doc's comment about someone dying from the Herceptin really makes no sense to me. Did the doc provide a number of POSITIVE outcomes?

I am sure there were many variables that led to that patients demise that your doc did not tell you about. Obviously, many of us HER2+ patients will not fare as well as others but the fact that there are more of us with SUCCESS stories from the Herceptin convinces me it is worth the effort. I am a "3" on the FISH.

Like all HER2's; you have an aggressive cancer -regardless of the numeric value- The fact that you are educating yourself and asking questions implies you are proactive!!! Follow your gut... I really wish you well-

Maria

[BubblesMom]

Thank you all so very much for taking the time to give me some feedback and food for thought. I am blown away by the sensitivity and sense of comraderie that I feel among the members of this group. And to think we're total strangers! ;>) Big hugs to each and every one of you.

Denise