length of Herceptin treatment

[Nancy]

I'm currently getting Herceptin off-label - started it with Taxotere. I finished Taxotere in late Feb then had rads, then back on Herceptin. My onc is thinking of a total of 6 months of Herceptin - just because it's really not known how long to give it. I had 4.8 cm tumor, 10 of 20 positive nodes, er/pr+, her2+, Stage IIIc. Also taking Lupron shots so I can take Arimidex. Is anyone else taking Herceptin for this short amount of time? I'm feeling scared to keep on taking it and scared not to. I think it's causing me to be tired because of a low RBC, but if I stop I'm afraid a lot worse could happen. Sorry I've rambled on. Thanks.

[Rozebud]

I don't know for sure, but I've never heard of a herceptin trial that is under 52 weeks. In fact, they all receive herceptin over 52 weeks in some form (either every week or some every 3 weeks). I am on a 52 week trial, post A/C and am also getting taxotere simulateously for the first 12 weeks. I'm the same staging and receptor status as you (11/18+ nodes). There is an onc. in my area that will give it off label, but she insists on a year as well. You might check with others, but I think a year would be the minimum I would want. I am hoping when my year is up they will let me stay on it indefinately.

[Ruth S]

Hi there - I am currently getting Herceptin off label too and basically have the same situation as you with 10 lymphnodes except I am ER/PR -. Anyway, I finish Herceptin in August and after talking with many people (including my brother in law who is a cardiologist) I think that it is the best for me to stop it then. I had gone to get a 3rd opinion because I had heard from some people that I should stay on it forever...(the Dr's all said no more after a year anyway- including Duke Univ). I am 37 and in really good shape otherwise. There is always a concern of developing heart problems with a EF reduction. I feel blessed that I was able to receive this wonderful drug but I also feel that I want to save that drug in case I may need it later again...without the risk of heart condition developing or building a tolerance to it. I have read literature that with some people Herceptin eventually becomes ineffective...I wouldn't want that to happen before I truly needed it. Make sense? Anyway, I think it is great that you are on it and I would definitely continue to take it for the time your Dr. would like for you to. There must be a VERY good reason that they are doing this trial with the drug for earlier stages. I think we will see great results in the near future from this trial.
FYI my RBC goes up and down like a yo-yo but I have been told it will get better. I just need to get in the pool and swim more often!

Ruth

[JoJo]

I was lucky enough to get Herceptin off-label for a year. Before my 1st recurrence, my onc told me to suspend Herceptin after my year is up in Aug. I've never heard of Herceptin running longer than a year, except for metatastic patients. Now that I have the recurrence, I have no idea whether I'm to continue on Herceptin. I'm meeting my onc again next month, after receiving my scan tests, we'll be discussing new treatment options there.

[Leslie]

I had 13/15 lymph nodes positive and my oncologist gave me Herceptin off trial, but would only give it to me for 6 months. His reasoning is that there is no evidence that longer than 6 months is more effective and that they do not know the long term effects.

[vicki]

I went off of herseptin for three month my cancer came back..I would advise never stop...