Is this onc for real? Herceptin weekly/everythree weeks trials

Diane H · 09-23-2005, 05:29 PM

Have been on weekly herceptin for four months, have decided to switch to every three week regime. My onc fine with this but onc on duty the day I actually switched felt he needed to inform me that if I was his patient he would not allow me to go to the three week dosing as he felt it increased cardiotoxicity and had not been used in a trial. I thought it had been part of the three arm trial just recently ended due to the great results. I asked him where I could find the information that he was quoting as to increased toxicity with the three week and he basically ended the conversation. So what I'd like to know has anyone done trials with three week dosing and are you aware of any problems with it---

Esther · 09-23-2005, 08:58 PM

I started out on Herceptin weekly and switched to every 3 weeks. I specifically asked if there was any difference between the two schedules, and was told by my own onc. at Loma Linda Univ. and my second opinion Dr. at UCLA that there was no difference.

Dr. Pegram at UCLA worked with Dr. Slaman in development of Herceptin, and he was one of the ones I posed the question to.

So...from my point of view, that onc. is not correct in his advice.

09-24-2005, 06:51 PM

What data were the oncologists referring to when they said there was no difference between Herceptin weekly vs. every three weeks? Simply because two oncologists agreed doesn't make it so. We have heard from several people on this board about gettin gopinions from their oncologists about increased toxicity risks. My oncologist has said that he has seen increased toxicity risks with older patients on an every three weeks Herceptin schedule. I'm not saying that my onc has the right answer, but I don't know if the others do either because I haven't seen any data. Can anyone cite the study that relates to this issue?

I would love to go every three weeks instead of every week, but until I see the data I am not going to suggest it.

Val

P.S. I am now unregistered because I don't know my password--it was saved for the old board but it doesn't pop up any longer. One of these days I'll re-register, but then I have to start over as a new member :-(

Diane H · 09-25-2005, 07:09 AM

I agree, this is the thing, where is this data to be found. The oncologist I talked to, well, before he seemed to go absolutely speechless, he is one of those who don't like to answer questions or be questioned, did not seem to know where this data was either. It seemed he just felt that it might be so, the increased toxicity. He didn't even appear to know that a trial had been done with three week dosing. Would love to hear from anyone who did that trial or arm of trial with one week dosing.

Esther · 09-25-2005, 06:25 PM

Well..not sure where the data is coming from, but Dr. Pegram worked with Dr. Slaman on the development of Herceptin, and is known as one of the top researchers in the country.

If he says it, that's good enough for me. However, next time I see him I will ask him. From my understanding the toxicity was only associated with the 30 min infusion on the every 3 weeks schedule. When they went to a 90 min infusion rate, the cardio-toxity problems disappeared.

Julie2 · 09-25-2005, 06:32 PM

Esther,

It is interesting to know that the cardiotoxicity disappeared when they went for 90min infusion time for a 3 week schedule. Where can I see the data? I am now denied Herceptin as my MUGA showed 44% on a 3 week schedule(90min infusion time). I am just wondering if I increase my infusion time maybe I can save my heart from toxicity.

regards,
julie

uma · 09-26-2005, 05:18 PM

Diane,
Yes, this every one (1) week versus three (3) week regimen confuses everbody into thinking three week interval is better. What they won't tell you is that once every three weeks you will also get three times the dosage of one week. You get all in one big shot in the three week regime, instead of three smaller shots in weekly regimen. The three weekly shots save only the time spent by the doctors or nurses. In order to minimize the number of people crowding in the hospital, they made it for their convenience. One big shot may result in higher risks for you because of side effects and all other risks associated with Herceptin. I opted for the less risky weekly shot for my wife. She had no side effects or degradations of heart LVEF. Ask them whether it is to their advantage or your benefit that matters most in Cancer treatment.

Rama

Esther · 09-26-2005, 06:01 PM

Rama, of course you get 3 times the dosage by going every three weeks. That's the whole point. The point of going to the every 3 week schedule is to make it more convenient for MYSELF.

I have a life, I travel, I want to forget I have cancer sometimes. I LOVE being able to go only every 3 weeks, instead of weekly.

The Dr's office makes more money on the weekly treatments, as they can charge the extra fees for admin of the Herceptin 3 times, rather than once every 3 weeks.

Anyway, everyone is free to make their own choice. If you feel better going in weekly for your Herceptin infusion, that's great. I'm sure your dr's office does not mind. But it is a personal choice. There are no increased benefits or risks associated with either time schedule. There is no benefit either clinically or in reduction of side effects in staying on a once weekly schedule.

So...make your own choice for yourself.

Christine MH-UK · 10-02-2005, 03:50 AM

On the HERA trial, where everyone got herceptin every three weeks, the incidence of heart problems was fairly low. The rate of congestive heart failure was only .5%. Since HERA was a really big trial, I am a bit surprised that your oncologist had never heard of it.
The doctor who presented the trial results at ASCO in May on all of the herceptin trials, including HERA, stated that it was really the proximity of herceptin to adriamycin, rather than herceptin itself, which seemed to cause serious heart problems in women with early breast cancer.

Diane H · 10-02-2005, 07:18 AM

Hi Christine--- Thanks very much for that added information, this oncologist does seem to be sadly uninformed, put me through alot of distress for nothing I feel that day. Everything I've managed to dig up says there is no difference between the one and three week regimens too. Want to add visited London a few years ago and had the best time of my life, want to visit again as soon as possible and see more of the country.

Barbara H. · 10-09-2005, 11:27 AM

I'm at the Dana Farber and my ocoolgist said that there would be no difference in its effectiveness to take it every three weeks. It is more convenient for me. I would hate to go there every week. I've been on herceptin for over a year and have not had any problems. My infusion also lasts on a half hour with no meds and that suits me fine. Considering the fact that the cancer was in the liver, lungs, brain and seemingly in various other places on the pet scan (bones excluded), I now feel better than I have in 10 years and consider this drug a miracle for me. I just hope it continunues to do its job, and hope that a cure will be found at some point so that I don't have to go every three weeks for the rest of my life. Nevertheless, I've resigned myself to the fact that I will probably need it for a long time, or as long as it works. At the moment I feel fortunate that it is working for me.
Best wishes and good luck to those of you who are trying to make a decision.
Barbara H.

Diane H · 10-10-2005, 05:57 AM

Hi Barbara, am very happy for you that herceptin is doing the trick, lovely to hear a sucess story such as yours. And glad that you can do the three week dosing, I love it. Made such a difference in my outlook not having to go to my slightly disfunctional infusion unit every week. Best wishes to you too-Diane H.