Herceptin - NED & More than 6 Months Post Chemo

I know this topic has been discussed at great length, but I think it is so important to so many of us. I was diagnosed 9/03, bi-lateral mastectomy, 4 nodes +, Her2+++, CAF chemo (6 months), 7 weeks radiation, Walter Reed vaccine trial. I am NED.

I asked my onc. last week about Herceptin and she said that there is no evidence that it helps more than 6 months out from chemo, and in fact could hurt. I plan to get more opinions, but I am wondering what you are all hearing as you consult your oncs. Any input would be greatly appreciated.

I too was told the same regarding the 6 months. I am within the window, but having a difficult time finding someone that will give me Herceptin (I am Stage I).

mts

Hi Cynthia,

It is definitely true that there is no proof yet that herceptin more than six month's after chemo helps. However, I am a bit puzzled by your oncologist's assertation that it could actually do more harm than good.

The reason that there is no proof is that nobody has looked at this matter yet. For obvious reasons, the studies that showed that early herceptin was effective in preventing recurrence selected patients who were still in treatment. So no proof means that it has not been proven, not that it has been disproven.

I was diagnosed October 2003, 6 * FEC 75, surgery, 8/19 nodes, Her2+++, taxotere * 4, radiotherapy. I finished treatment in August 2004. A few days ago, I went to my oncologist to ask him whether he thought I would benefit from herceptin and he said yes, which really surprised me, since I was more than six months out of treatment. By the way, this put him in a really awkward position because I am being treated through the National Health Service in the UK, which hasn't authorized its use yet, and I can just about manage to pay for it privately, but he didn't know that, so I was really putting him on the spot. He had no incentive at all to tell me that herceptin would benefit me, just the opposite.

He's on the HERA trial committee and seems to have a good sense of what is going on in the world of oncology. There are some risks with herceptin, but on the HERA trial the rate of heart trouble was something like 1 in 200 for the group getting herceptin for a year.

I would think with CAF that herceptin would be a good idea because the group that benefited the most on the HERA trial was the anthracycline only group. They didn't get the Walter Read vaccine, of course, but my understanding was that the Walter Read vaccine trial has been opened up to people who have taken herceptin.

Best wishes,

Christine

Thank you Christine for your very thoughtful response. I am in the market for a second (and third opinion) as my onc.'s response is not atypical for her -- shoot from the hip with conclusory answers that I find unsatisfactory. I have no idea what the evidence is she is referring to.

I am wondering if others are finding oncologists who are willing to give Herceptin more than 6 months out. If so, I would be curious to hear what they have to say about it.

Again, Christine, thank you.

Cynthia

Cynthia:
To date, I have had two onc. opinions regarding this subject. My onc. did not recommend herceptin. I'm almost two years out from chemo. She said the NCI only recommends it for people who have finished chemo less than 6 months or who are just being diagnosed.
I went to the James Cancer Institute at Ohio State Univ. where they ran herceptin trials. The onc. said based on my age (41), tumor size of 3.3 cm, 1 node positive and Her 2 status of 3+, she would recommend the drug for me. There is no evidence it wil or will not help someone in our situation. I am going to seek a third opinion which I hope will help me make a decision, however, my gut instinct tells me to go for it. If it buys me some time of NED, hopefully there will be more information in the years to come as well as new drugs that will help us. I feel I have a better chance if I can keep the cancer from coming back at all. Just my feeling. It is such a difficult situation to be in and I contemplate what to do each and every day.

Joannie,

Thank you for your reply. I too will continue to seek other opinions. I do think that we fall into the "we don't know" category. Hence, the more cautious physicians will follow the guidelines. (Call me cynical, but from a liability perspective they can't go wrong if they follow the standard of care approach.) However, I think there is a sense out there that those of us in this situation may well benefit from Herceptin nothwithstanding that there is no data one way or the other on the topic. So I think it comes down to a judgment call on our parts. I am continuing to investigate options and will make a decision when I feel I have enough information available to me. (However, since I went for the vaccine trial early on, I tend to be the guinea pig type so I have a feeling I know how I will come out on this issue.) I have a 3 year old daughter who motivates me to do everything in my power to beat back the cancer and to remain NED. I know we all have our motivators.

Best of luck to you.

Cynthia

I finished treatment in April of 2003 (a/c, taxol, radiation, arimidex, 1 node positive), and my onc called me last month to find out if I would be interested in Herceptin. He believes that herceptin will help reduce my risk of recurrance. His logic is that if it helps those with mets and those going through treatment, why wouldn't it help me? I'm grateful to him and have received two treatments so far. I felt kind of crappy after the first one, but it only lasted a day. The second treatment gave me no problems at all.

Bev

Bev,

I, too, am NED and almost a year out of treatment after a 7/03 diagnosis. My onc just asked me this week if I would be interested in taking Herceptin again....Of couse, I said yes.

Isn't it interesting that all of this further interest is going on now after the May conference? It seems that many of the oncs here in Indiana are really looking positively at this treatment even for those of us out of treatment awhile. I had a very aggressive tumor that was treated neoadjuvantly before surgery as well as after....16 rounds of A/C/Navelbine with Herceptin w/the last chemo in May of 2004 - then, radiaiton after that.

My doc will be attending a meeting today with others in the state and will have more information for me on Monday. I will share his thoughts here when I get them. Happy weekend to all of you!

Ann

Here in Australia i have been on HERA trial but observation only. My oncologist said a few weeks ago that i will receiving an offer in the mail to go on Herceptin. As the other two arms are going so well, they want to give it to us. i don't know what it involves as yet but am left wondering do or don't I as you other women are. I am 14 months out of 8 doses of FEC, mastectomy, 3 nodes, tamoxifen, HER-2+++. I was quite pleased when i missed out on drug at first because i didn't have to make a decision, but now i do!!
thanks for all the imput
Christine

Hi Christine,

If I were in your position, I'd go for the herceptin. For some reason, herceptin made a really big difference in the patients who had it after they had had an anthracycline like FEC, a much bigger difference than after an anthracycline and a taxane.

Best wishes,

Christine