Several posts back, Eric posted names of top HER2 docs around the USA. I figured I had nothing to lose, so I went ahead and emailed two of them with my questions regarding late Herceptin. They both replied in a very timely manner...I was very surprised!
I'm almost two years out from chemo and trying to figure out what to do regarding Herceptin, which I never had. So far, I have visited two onc.: one says no Herceptin, the other says go for it. I have received two email responses: one says leave no rock unturned and the other says no. Sooooo, I feel no better off than when I started this journey. My gut tells me to take it, but I just don't know.
See the emails below for the information I received. Let me know what your take on this is.
Thanks and let's keep asking questions! Sorry this is so lengthy but it seems that so many of us are searching for answers.
Joannie

<Response from Dr. Debu Tripathy:>
Sorry for the delayed reply - I've been out of town. I think that the benefit
you get from Herceptin, in terms of how many percentage points the risk of
recurrence is lowered at 5 or 10 years, diminishes the further away you get from
the end of chemotherapy. We have no idea with how much it falls off over time,
but basically, you want to make sure that the benefit for any individual person,
based on their individual risk characteristics (number of nodes, grade, tumor
size, etc.) outweighs the long term risks. The main one is cardiac toxicity,
which is about 4%, but tends to resolve over time. However, we do not know if
decades later, this may be manifest by premature heart disease. So we can only
estimate at what point for a given person, with the benefit outweigh the risk.
In your case, I think that you would still benefit at 6 months and this would
exceed the small risk (of course it's hard to equate heart problems with breast
recurrence - they are both serious, but have different implications on
longevity). By 12 months, I think it would be close, but still in my opinion,
would outweigh the risk. You are now out almost 2 years, and I would not
proceed with Herceptin. The diminishing benefit over time is the main reason,
but keep in mind, we really don't know how quickly this falls off.

I hope that helps - I realize it is a very controversial area and you will get a
wide range of opinions - I know that from querying my colleagues, but most do
agree that after 1 year, even for a higher risk case, that they would not
administer Herceptin. Best wishes,

Debu Tripathy, M.D.
University of Texas Southwestern Medical Center
5323 Harry Hines Blvd, NC8.106
Dallas, TX 75390-8852
phone (214) 648-7705
FAX (214) 648-1955
debu.tripathy@utsouthwestern.edu

My Note to him:

Dear Dr. Tripathy:
I recently was given your name for being an expert in the Her2 field. I read
several of your articles on-line and was overwhelmed by the extent of your
work/research in the breast cancer area.
I am searching for a doctor who can give me a second opinion regarding my future
medical treatment. Here is my background.
I was diagnosed with bc at the age of 38 (April 2003), infiltrating ductal
carcinoma, 3.3 cm tumor in left breast with DCIS too. One node positive. I had
the left breast removed along with 7 other nodes. Surgery was followed by 4
treatments (dose dense) of AC and 4 treatments of Taxol. No radiation. I
removed the right breast prophalactically in December of 2003.
I was Her2 3++ according to the FISH report. I am very concerned about
recurrence. With all the information that recently came out of ASCO, it seems
that Herceptin is showing promising results for many Her2 positive women.
Unfortunately, I was one of thousands who didn't receive it in the adjuvant
setting. My current onc. said NCI is not recommending Herceptin for someone who
is more than 6 months out from chemo. I finished my chemo in August of 2003. I
received a second opinion at the James Cancer Institute in Columbus Ohio. The
onc. there highlhy recommend I take Herceptin even when the chance I could
become resistant to the drug as well as possible heart toxicity. She said due
to my young age, large tumor and aggressiveness of my disease, it would could
possibly benefit, but no one really knows.
Can you please provide your opinion or recommend someone in my area who might be
versed in the Herceptin field. I'm desperate to keep this disease from
returning. I feel like my best chance is to keep the disease from returning vs.
trying to manage the disease. At this current time, I'm NED according to blood
tests. Also, are you giving Taxol with Herceptin for someone like me?
Your time/input would be profoundly appreciated.

<Note to Dr. George Sledge - Indiana>
I don't know your exact location, but Charles Shapiro at Ohio State in Columbus
is certainly well-known as a breast oncologist.
We have no data on patients such as yourself with regard to Herceptin benefit
this far out, so anything I would say would be at best a guess or hunch; I thing
this probably, for you, comes down to whether you wish to leave no stone
unturned. If the answer is yes, then you should probably consider a year of
Herceptin. Best regards

Like the Dr. said "we don't know if it has any benefits that far out" They don't know. They only know it helps adjuvantly right away. I would go for it. Herceptin is quite tolerable. I got it in trial, but if i was in your shoes, and they let me have it, i would take it!