Stopping herceptin

[Judy Krak]

My BC was 3 cm, 7 of 18 nodes positive. ER/PR - and HER2 +++. Have done 4 rounde neoadj. Adriamycin and taxotere, followed by surgery and 3 more taxotere until skin toxicity stopped it. Then 36 rads. Have been on herceptin alone since March 3. It is being done off-label since I didn't qualify for any trials.

Now the question....went to oncol. today and he has decided 6 months of weekly herceptin is all I'll have. His position is that I'm taking strong meds. for a disease that there is no evidence that I have. If I should have evidence of mets. then we will go back to herceptin. I don't want to be a baby about this but the thought of being OFF herceptin is scarey! I know lots of you have been through that "cutting the tether" issue but I have had continuous treatment since diagnosis. What are your thoughts? Should I push him for more or is what he is saying reasonable? Those of you who are doing trials, do you have any prelimary results? I am so grateful to be getting the herceptin but scared to stop....and it's 4 months away!!!!!

[Bonnie]

I'm in the UCLA trial and there haven't been any results yet. Sorry. I just finished my chemotherapy, taxotere, carboplatin every three weeks and herceptin weekly for six courses. In two more weeks it will be a triple dose every three weeks for a total of a year. I felt lucky to have gotten into the trial so I could get herceptin. As I understand it, it's not easy to get it off label. Good luck to you.

Bonnie

[chandi]

Hi Bonnnie !

In your trial how was the dose look like ? was it weekly or 3weekly how many mg? and what was infusion period ?,I am asking because I am about start in next week.
Thanks .

Chandi

[Bonnie]

I don't know the dosage but the herceptin was given each week over a half hour. Starting in two weeks it will shift to every three weeks and it's only supposed to take a half hour even though it will be a triple dose.

[jeff]

Hi Judy,

My partner, Rachel, is receiving herceptin off-protocol and her oncologist (bless him!) made noises a few months ago about stopping at 6 months. He didn't have much of a reason for this, other than that this has been the "standard" length of time for chemotherapies for bc in the past.

So I wrote up a detailed memo to him arguing in favor of at least a year and it looks like he's now going to do this. Feel free to email me if you want a copy of the memo I wrote and I'll send it on.

Also, a number of research leaders I got in touch with (including Matthew Ellis at Washington U. and Karen Gelmon in British Columbia who's involved with the Canadian HERA trial) said, basically, that they can't support off-protocol use but IF you're going to do it, you should mirror one of the existing protocols. This argues in favor of at least a year as well. Clifford Hudis, of Sloan Kettering in New York was also quoted (in a LBBC teleconference in January) as saying the same thing).

All the best,
Jeff

[Eleanor]

Hi,
Flying solo (without drugs) is frightening. I don't think anyone handles it well. I've done it a couple times and it doesn't get any easier. Follow Jeff's lead and plead your case to stay on it. If that doesn't work, perhaps get a 2nd opinion. Maybe you can find a dr. who will keep you on it. There are many women who are on herceptin alone who do not have any evidence of disease. This is our answer to tamoxifen and it is being used as a preventative.
Good luck
el

[Paul]

Judy,

Follow Jeff's lead and obtain a copy of his memo. It is possible to base a one year treatment of herceptin upon how long it takes the drug (i.e. Herceptin) to hit "steady state" (i.e., peak effectiveness)in the body and the potential timing of a recurrence.

Jeff has spoken to some of the "best in the business" about this issue, as well as other issues relating to off-label use of herceptin.

Warmest regards,

Paul

[Judy Krak]

Thank you for the encouragment, Paul. Jeff has sent me the memo and it says everthing I think I will need. He has been MOST helpful. I have 4 months to work on it. I'd personally like to do at least a year. His info. will help me when I see the oncol. again. Part of my issue is since I'm getting it "off-label" I feel like I'm not in the "power" seat but the Dr. is pretty easy to work with and I think if I have my ducks in a row he will at least listen. This site is so wonderful! Thank you for being part of it...

[Vicki]

Keep up the good work, Bonnie! You sound like you're on an excellent protocol. Were you node-positive? I'm seeing a doctor at UCI who's involved in a Herceptin study for node-positive women. I'm node-negative, but want to be close with someone who's following this regimen. I do know a doctor in Newport Beach who prescribes "off-label" if I decide to go that way at some point.

Be well,

Vicki

[Bonnie]

I was node-negative. My tumor was 3.8 cm. and I was staged as IIA. This study included women at high risk even if they were node-negative. I do understand that I was the last woman allowed into the study and the study is closed now. I'm sure they will be opening other studies that allow node-negative and you have to read to the end of the description regarding the node status. Of course the studies may start too late for you.

Good luck with your journey and let me know how you're doing.

Bonnie