herceptin indefinitely for early stage?

As a stage 3 patient, I feel very fortunate that I was able to get herceptin for one year after primary treatment. As the year comes to a close, however, I am worried about what I should/can do next. Are there any women here receiving long-term herceptin (>1yr or indefinitely) for early stage bc? Any comments/feedback would be appreciated. Thanks.

[athena453]

Great question, I am in a similar situation. I asked my onc about staying on herceptin for more than a year; pending HERA trial results. She felt that it ulimately would have been more beneficial to compare one year of herceptin folling initial dx with a shorter time frame...six months, for example.

[Julie2]

I am in the similar situation and really want to stay atleast one more year on Herceptin. My one year will be over in march 2005. Are there anybody getting more than one year? I know Barbara is getting for the 2nd year.

Julie

[Kim in DC]

My onc and I decided to continue untill the Hera trial results are announced next May. She is very conservative and I am surprised she even suggested it. I was stage III and I started Herceptin 8/04 in combination with chemo.

Kim

Ladies,
I'am early stage(1c), and will be doing two yrs. I was surprised my onc. prescribed this, but was grateful too. When the two yrs. is up it will depend on the European studies, but he did mention there is a possibility I could be on it indefinately. I'am going to U of M in Michigan. Hope this helps.
Michelle

Julie2
Why did they give you xeloda if you are stage 3? I am stage 3 also and did not get xeloda. I thought it was for stage 4.
And also i'm another stage 3 gal that is wondering if i should try to push for another year of Herceptin. I got one year with a study

[Barbara]

Hi:

I am stage IIB and I am on my second year of Herceptin. My oncologist readily agreed to the second year when I asked and my insurance is paying for the second year. I too believe that Herceptin is to HER2 what Arimidex, etc. is to Hormone positve BC and that maybe five years would be benefical as most re-occurences happen in the first five years.

Barbara

[Lauriemn]

Hi, I am stage 2 and am also considering doing another year, after I finish my first year of herceptin. I am concerned though about the heart problems. there is no way to know if it will cause problems 15 or 20 years later. Is anyone else concerned about this? I also wonder if I stay on it and I still develop mets, will herceptin be still as effective in helping stop the mets? Has anyone else decided not to do a second year because of various concerns? Laurie

[Lori]

I am really interested to see what you find out about this. I also am a stage 3 gal. I am getting Herceptin for a year which will end in May. I was wondering if anyone heard of people getting Herceptin once every 2 or 3 months? My nurse said that she has people getting Herceptin every 6 weeks or 3 months in some cases. I was wondering if she was off her rocker or if this really happens. I asked my clinical nurse and she said it is a big unknown. She said that it is difficult to justify giving the drug to a "healthy" person. My response to that is...so then why do we take tamox, or AIs?

Hoping for answers,
Lori

Hi--I was dx'd in 3/01--was stage III. I got one year of Herceptin. 3 mos. after it stopped some of my blood levels increased--i.e. alkaline phosphatase. I then started other prophylactic treatments and the levels normalized. However, I am wondering if it would be feasible at this pt. to do a 2nd year of Herceptin now?

I am stage IIb and have been on Herceptin (every 3 weeks) since December of 2004. With my 1 year closing in December of 2005, I asked my oncologist for an additional year. He readily agreed and I am pretty happy about it.

Peace and Blessings,
Monique

Hi fellow decision makers-

I was dxed with Stage IIB, Her 2+++, ER+(weakly), PR-, three positive lymph nodes in Feb 04. Had standard 4 doses AC(before I switched oncologists-wish I had been given dose dense) and then Taxotere every 3 weeks and Herceptin every week for 12 weeks.(was not in a clinical trial). Also had 28 weeks radiation, started Arimidex and had one year of Herceptin. Am just starting a second year of Herceptin. (I will continue routine MUGA scans to monitor my cardiac status/LVEF which has stayed in the low 50s). I had decided that I would rather be ahead of the HERA trials rather than behind although I am fully aware that the final results may not show a statistical difference in disease free/overall survival in those who took one year vs two years in that particular study.

I found an interesting statement by Dr. Edith Perez from the Mayo Clinic in an online interview: http://www.medscape.com/viewarticle/506111

Moderator:"How did you choose to study one year of trastuzumab instead of a shorter or longer duration of study?"

Dr. Perez:" We could have selected 6 months but based on preclinical models we knew we had to use it for a long time. We felt that if we required 2 years of therapy, we might run into problems with compliance. We felt that 6 months might be an insufficient duration but it was a somewhat arbitrary decision. We are currently working on a new clinical study to evaluate the optimal duration of therapy."

I greatly respect the value of clinical trials and their use in evidenced based clinical decision making. On the other hand, as a sample of one, I am pleased that I have an oncologist willing to cautiously proceed in an individualized trial with me and am comfortable with my current decision to go for the two years.

Best wishes to all who are engaged in these ongoing, personal, and sometimes complicated decisions.

I finished chemo treatments on Oct/4/05.
I just had the results of a MUGA test and I start Herceptin on Oct/26th.
Also, I start radiation 16 to 25 treatments on the 27th of October.
My oncologist told me that I would take Herceptin for 1 or 2 years, once every three weeks. They are not certain yet for how long I will take it. I did ask the question 'How will you know that the Herceptin is working?' and I was told that they don't know, that the absence of a reoccurence tells that Herceptin is working.

I was diagnosed in Feb/05 had a lumpectomy, Stage 2, Grade 3, Lymph Node negative, er-pr-Her2+. I was told that I had an aggressive tumor.

I am grateful to be approved for Herceptin.

Best wishes to all.
Joan M

[Sheryl]

I was surprised to read that a stage 1c person was given Herceptin. The latest study in Helsinki, Finland compared one year of Herceptin with 9 wks. of Herceptin & after three years follow-up, there seemed to be little difference in the outcome. Is anyone receiving less than l yr.of Herceptin at this time? Sheryl

[Rupali]

I will finish my one year of Herceptin in May 06. My oncologist said that if there is no news about Hera trial in 2006 ASCO then they will stop my Herceptin as they are afraid that it may cause heart damage which noone knows how it works in long term. I got convinced with him but now after reading all the posts I am confused wether I should push for another year.

[AlaskaAngel]

Hi Lori.

As one of those who:

1. has been through chemotherapy that is acknowledged to be damaging to the heart,

2. then was subjected to tamoxifen that was considered likely to promote further cancer in some HER2's

3. then put on an AI with its limited history and potentially significant adverse long-term effects,

4. then prevented from getting evidence one way or the other about the question of Herceptin as a high-risk Stage 1 patient,

5. and now observing that those newly diagnosed in my category as well as those considered to be at lesser risk are routinely receiving Herceptin,

I too am legitimately concerned about the logic of the categorization process in regard to providing Herceptin for HER2 breast cancer patients.

I don't know if my oncologist understands my thinking about this, but he has tentatively authorized Herceptin for me beginning in January.

AlaskaAngel

[RobinP]

I find myself coming into the Herceptin war game late as a her2 player, having been diagnosed with bc nearly 4 year ago. And yes, my oncologist is finally tentatively allowing me to begin Herceptin next year. The big issue is timing, a year, 9 weeks two years forever. The Finnish trail speaks volumes to me, big gains and little risks. This is particularly interesting to me being an er-,pr-, T1a, N0(i+), M0 gal with fairly small risk of relapse to begin with, especially being this far out. Even if I wasn't in this low risk category, the Finnish trail results, would make me thirst after it. I used to be a cardiac Intensive Care Nurse at the Johns Hopkins Hospital, and worked almost solely with people with failing hearts, getting transplants. It freaks me out until this day, yes I am a player afraid of the collateral heart damage as I toil with Herceptin so cautiously, knowing when I do receive it, I will be getting my cardiac enzymes evaluated which are predictors before echocardiogram of LVEF failure and heart damage and I will get Herceptin for the abbreviated 9 week schedule.

I've been listening to the subspace chatter. I've heard that the biggest gains from Herceptin come in the first few infusions.This is especially true when other issue besides binding of that her2 molecule are occuring are occurring early on and very quickly with activation of pTEN, causing a halt to the cascading events of cellular angiogenesis and tumor spread. Of course, you got to have pTEN present for this early on killing kick. Guess what, I just found out I have pTEN, lucky dog huh? No, what I consider lucky is not having breast cancer at all. This whole Herceptin guessing game deal makes me feel like a lab rat. Well, I guess we all are, in this her2 war. Anyway, I bet there will be a lot more clinical trails testing timing, including short 9 week trails, and 2 years and longer trails. In about 5 years, the timing issue will be revealed but my money is on the shorter run of Heceptin.