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

[Diane H]

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]

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.

[vpfeiffer]

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]

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]

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]

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

[Esther]

This is from the Genentech site:

The every three-week regimen did not appear to cause a clinically significant increase in adverse events as compared to those seen with the once weekly dosing regimen. Adverse events seen to date include neutropenia, alopecia, fatigue, arthralgia, myalgia and parasthesia that are common side effects of paclitaxel therapy. One patient experienced grade III heart failure.

"Clinical studies have demonstrated that Herceptin given once weekly in combination with chemotherapy provides a significant survival benefit for women with HER2 positive metastatic disease," said Dr. Fyfe. "While this study is preliminary, it suggests that administering a 'triple dose' of Herceptin one third as often, i.e. every three weeks, may prove to be a more convenient schedule for women with HER2 positive metastatic breast cancer."

You can see it for yourself here:

http://www.gene.com/gene/news/press-releases/display.do?method=detail&id=4661&categoryid=4

If I can get more documentation from either of my oncologists I'll post that as well. My primary onc from Loma Linda Univ. is on the board of directors for Herceptin with Genentech, so I'll ask him at my next appt this Friday.

[Unregistered]

Esther, many thanks for the info - I also found some information supporting the three week dosing. It was posted by Al in articles section of the forum. This study found no difference in cardiac toxicity between the one week and three week dosing. Yay!!!! SO glad to have switched to the three week schedule. Psychologically just so much better and convenient. My port had gone bad and the thought of having to root around for veins every week had me shaking. This is much more doable as they say. It's a blessing that you have access to the doctors that were directly involved with the development of Herceptin, Thanks again for sharing the info, Hugs, Diane

[Diane H]

Forgot to log in, forget alot of things lately LOL. Again, thanks to Esther for all the good information, Diane

[uma]

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]

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]

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]

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.

[margo]

I was hoping to change to an every three week administration of Herceptin, or even every two weeks. However, my Oncologist said he wants me on weekly, unless I am going on vacation. He stated to me that it is not "twice" as good to go every week vs. every two weeks, but the latest information available demonstrates that weekly is better.


I have hesitated writing about my situation for two reasons:

1. I was disappointed that I could not change my Herceptin schedule,
2. I was concerned about how the patients on this site might feel about such information from one person's Oncologist.

Going to the hospital for weekly Herceptin is a huge commitment; however, it is one that I must keep. My life revolves around this drug. If going weekly increases my chances of survival, I will do it.

Best Wishes To All

[Diane H]

Hi Margo, am really interested in this information that your dr has, could you ask him where it can be found? I have switched to the three week dosing because all the information I have found so far points to no difference in effectiveness and safety with it. And it is SO much more easier to deal with. But if your doc has some research otherwise would love to know where to look it up and check it out. You bring up a good point about getting just one opinion from one oncologist, I like to research and confirm as much as I can, unfortunately there are some medical personnel who make mistakes. I can send you my email address if you'd rather send the information from your doc there, Thanks very much, Diane

[Christine MH-UK]

I would really like to see data on this.

[Christine MH-UK]

I got worried, so I looked in PubMed and found this article by Dr Pegram
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16133791&query_hl=5


Which says "Although trastuzumab is currently usually administered on a weekly intravenous schedule, evidence suggests that a triple dose of the drug given once every three weeks has a pharmacokinetic profile expected to be equally efficacious. Neither the optimal schedule nor the optimal duration of trastuzumab therapy has yet been clearly defined in controlled clinical trials."

[margo]

I will ask my Oncologist for the source of his information. I will see him again in three weeks.

Sincerely,

Margo

[SandyBB]

I am in the US and I am starting herceptin next week - weekly for one year. My onc said something about the FDA ( I think that's who she referenced) not approving the 3 week schedule, but that they should soon and I could switch if appropriate...I have no signs of recurrance, ended my treatments almost 2 years ago but my onc recommended I do the Herceptin as a preventative measure, given the awesome results it is getting with patients.( I was stage 2B btw)

[SandyBB]

I just replied, then thought about this - could I only receive weekly infusions because I don't have mets?

[Diane H]

Hi Sandy, no, it's just that the use of herceptin is relatively new. Some oncologists are moving very cautiously on the three week dosing. However there is stats and research showing the three week is as effacious as the one week. I have switched as re posts above and many others. Think most people will be headed that way too.

[Roz]

Hi, i have been on weekly dose since Jan 05 and had a three weekly dose recently to allow me to travel o/s for 3 weeks. When I came back I received a weekly dose, and will continue to do so for the present. I have high blood pressure and I worry that a regular 3 weekly dose may eventually do some damage. But I am open to the 3 weekly regime (the convenience!!) if it seems just as reliable.

[Unregistered]

My onc rec'd Herceptin every 3 weeks right off the bat. I'll do 6 rounds of CMF with Herceptin every week then go to the every 3 weeks Herceptin. She said she had never personally seen any major cardio events with either the 1 week or the 3 week regimen.

Deborah

[Becky]

When I went to secure my Herceptin, I went to 3 Cancer centers because my onc would not give it to me. (When the ASCO presentations came out, their recommendation was to give Herceptin to every HER 2 woman who was 6 months or less out of chemotherapy and I was 3.5 months out but my onc insisted it was 6 months from diagnosis). So, I went to another local cancer center and they were giving it every week and I went to Sloan Kettering who was giving it every 3 weeks. Sloan was second so I asked about the difference in 1 wk versus 3 wks and they said no difference at all.


I ended up getting it every week but after 12 weeks switched to every 3 weeks (yesterday was my second one). My new onc (yes I did switch at the end of July even though the onc who would not give me herceptin did give it to me since I said I would switch - went to him so I could start asap but then did go) picked up the ball at every week and said I could switch to every 3 weeks whenever I wanted. I counted out on the calendar so I would be "off" during the holidays and vacation then started.

It's great to have that freedom and herceptin has a half life of 20.8 days so the concentration of herceptin in your body is just as high as every week.

Best regards

Becky

[Barbara H.]

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]

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.

[uma]

Julie2,
You say your MUGA showed 44% on a 3 week schedule(90min infusion time). My advice is take care of your heart with top priority. Cardiotoxicity due to Herceptin and lowering of MUGA to 44% (LVEF) is not easily reversible or may not be reversible at all. It would be common sense to go for a weekly schedule. To make it even less risky go for a weekly with 90 min infusion. I am surprised that your doctor did not drasticlly reduced your risks of cardiotoxiciy. You would not have got into this dilemma if you had a weekly with 90 min infusion, though no body has advocated it for safety's sake so far. Sorry, I am afraid, I could not respond to you earlier.
Rama

[Diane H]

Actually the damage is quite probably reversible, and if you are one of the very few who react badly to herceptin you would have reacted on any of the dosing schedules most likely. So don't get alarmed, get reliable information.