Herceptin given two years after chemo??

[kristen8594]

Hi,
Does anybody know if any doctors are giving Herceptin to women who where not given the option at time of dx?
I was dx 3/03 and finished treatment 12/30/03..8 rounds of chemo and 7 weeks of rad....Now I am wondering first why I was never offered the trial on Herceptin especially with my HER2+++ and want to know if other women have started taking it this far after chemo? Or are there any trials being offered for anything like this. My oncol said if I had more positve nodes (I had one positive node of 13) that maybe she would start it.
Has anybody else asked their doc's this? and if so, what did they say?
Thanks so much!
Kristen

[RobinP]

Yes, yes, yes!!!Look at some of my links; just type in late herceptin in the search section. I am have been looking into late herceptin myself and my oncol. has been thinking it over. However, I have found much resistance from oncologists, I have consulted with at least four breast oncologist, for late herceptin and they have said no for reason I do not completely understand. But I am not giving up yet and I suggest the same to you.

I was diagnosed in March of '04. I am her2 positive. After surgeries, while going through chemo, I asked my onc. why she was not giving me herceptin. She said that at the time the studies and trials were still in progress and that the risk of cardiac involvement was not yet clearly understood in terms of effectiveness vs. cardiac risk. So I said-- okie dokie then, your the expert !!
Well wouldn't you know 8-9 months after I finished standard chemo, in late April early May of this year, the very positive results of the trials showed how beneficial herceptin was for her2 people. At the time there was discussion about -- would it still be effective if one had been out of standard chemo more than 6 months. I was 8-9 months out, so she had some questions about that which she posed to a well known reseacher at Dana Farber in Boston. She consulted with him and his only reply was that they were using 6 months as a " cut-off" point. That brought up more discussion and the decision was basically left up to me, whether I would go on it or not. My decision was yes and started in June of this year-- every 3 weeks. Since then I've read on this and other sites that people who have been out of standard chemo for as long as 2 years are getting calls for their oncs. saying, " let's get you on it ".
The fact of the matter is- no one seems to know for certain, even the reseachers. So if I were you, I would advocate very strongly that you receive it, however that needs to take place.
I have felt such comfort in the fact that it was available to me and I decided to go with it.
Good luck in your efforts and keep me posted ( so to speak)
Carol

P.S. I was stage 2B, er and pr neg. 4/18 nodes positive sentinal node during 1st surg. they removed 4 nodes ,3 positive, 2nd surg. ax. node dissection 1/14 positive
C

Hi Kristen- I was first diagnosed in 2000. Five years later (2005) the cancer came back in my lung and collarbone area. I started on xeloda and herceptin in April. My scan showed that the tumors are all shrinking. There were three- all 5mm. Now one of them is 2mm and 2 are 3 mm. I'm very grateful for herceptin. God Bless- Cathy

My wife is ER/PR+ and Her2+. She started chemo 3 years ago. She responded very well and then went on Aridimex and Zometa. That seemed to stop things for the 3 years. We asked about Herceptin right away. The doctor said that he wanted to keep it for later use as long as the aridimex is working. It gave us three years. Now I hope the the Herceptin works. She started last week on Taxol, Carboplatin and Herceptin

JOhn

[EsterD3]

Hi Kristen
It looks like I am on same predicament as you are. Had my last chemo
on March 5, 2005. I am also an HER2 positive, early stage, with one node
containing 6 microcells. Had 4 sessions of adramycin and cytoxan, and 3
sessions of taxotere, after my mastectomy. I am currently on arimidex, which
I think gives me joint and muscle pain (maybe mixed with my athritis- am 65
yrs. old). My oncologist suggested that I go for herceptin treatment and I
am kind of hesitant to go for it. Do you think it will beneficial for me ?
Are you taking arimidex ? I have not heard from anyone who is on arimidex and undergoing herceptin treatment.

Please let me hear from you

I am on Arimidex and Herceptin. I do have a fair amount of joint pain, especially in the hands and feet. I am 52 and have been on Arimidex since 4/ 05 and Herceptin since 9/05. I also am having a little swelling in one ankle with some capillary breakage on both shins. But I am alive and cancer free for the moment!!!

[sassy]

I am on arimidex, fosamex and herceptin. I have been on herceptin since June and on arimidex and fosamex for a little over a month. I'm 46 and do have some joint and muscle pain. I started seeing a massage therapist and it has helped tremendously. Will probably see her 5 or 6 times then continue with exercises. I highly recommend the message therapy.

Sassy
________
Web shows

[Cathya]

I too am on Arimidex and Herceptin. I feel fine. The only side effect for me is a runny nose. I take calcium citrate and vitamin D each day along with CoQ10 and a regular daily vitamin. I am going tomorrow for the heart test and get one every two months. My doctor told me that if the Herceptin affected my heart he would take me off it while he treated my heart and then put my back on. So far I'm ok after about six months. I hope never to go off unless something better comes along. Cathy