Don't know what to do

[Becky]

My year of Herceptin will be over June 16 but my oncologist is willing to go out to at least the end of September to coincide with 2 years out from surgery. It is only 5 extra (every 3 week) treatments.

He says that if there are any 2 year results out by then, depending on those results, we can quit or keep going.

My insurance will continue paying for Herceptin. I am was also keen on it but now I am wondering. I haven't been able to discuss this with my onc because Friday was my infusion but I had to see another doctor because he was on vacation. I will see him again in 3 weeks. My heart is good. My last echo was 60 and it was always running at that.

Many of you who were in the trial only received one year of Herceptin and are doing so well. And many of you had lots more nodes involved than I did. I am at a real loss at whether to stop at a year or continue onwards.

Please let me know your thoughts.

Thanks in advance

Becky

[Cathya]

Becky;

My own personal view is to stay on herceptin if possible. My onc told me that no one really knows how long to keep patients on it. My thoughts are always to error on the side of caution with this disease.

Cathy

[sassy]

Becky,

I will be seeing my onc this week and will discuss whether to continue for a second year. In September we discussed the possibility and he was leaning toward a second year for me since I had positive nodes. My feeling is that as long as my heart stays good, I would like to continue, and my insurance will also pay. I would be very interested to see if others with positive nodes are going for the second year.

Sassy
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[saleboat]

I can't wait to be done with Herceptin-- my MUGA has gone from 78 to 63 and it really makes me mad that I might have done some long term damage.

Did you ladies see the post about the Stage III women who had neo-adj Herceptin, but did not receive it for a year, as is now standard. They are doing fantastic-- it is really amazing. Plus the Finish study which the patients only had Herceptin for 9 weeks. I know these are small studies, but I wonder if maybe shorter rather than longer will end up being most beneficial (risk vs. reward)

I'm hoping that ASCO will soon have news for us on being able to better determine whether or not Herceptin works for individual patients-- I know there's evidence about PTEN, etc., but so far, it still seems like a gray area.

Jen

[SaraD]

hi- ive been reading this site and just decided to join and post. i'm a biostats person in science, and i've done a lot of reading on my breast cancer including going over all the herceptin trials.

there is NO data to support continuing herceptin long-term. the drug companies would of course like everyone to think they need to stay on it, but there are downsides. one is the heart toxicity issue. the second is selection of herceptin-resistance. you don't want to "select" cells that are resistant to herceptin and have them grow. think about antibiotics and resistance- if you give antibiotics without good reason, then you get antibiotic resistant bacteria that are even more deadly.

i had a year of herceptin for stage IIIB with 22+ nodes, so i am as high risk as many of you. i'm definitely not continuing on herceptin, as i want to reserve it for later if i do have a recurrence. i don't want it to stop working because right now it's all i have!

just my two cents... sara

[Christine MH-UK]

I would wait until ASCO 2006 to make a decision on whether to quit it or not, since the two-year arm of the HERA trial may announce results then.

[AlaskaAngel]

I agree with you Christine, but I'm not sure how reliable ASCO is. The last time I waited for ASCO, they left people like me hanging out to dry...

AlaskaAngel

[saleboat]

Hi SaraD--

I'm glad you posted. Wondering if you've reviewed the study from Finland and the study recently posted here on Stage III women who received Herceptin neoadjuvent and did well without having Herceptin for a full year. I know these are small studies and shouldn't be taken as gospel. Wondering how they're interpreted by someone like yourself who actually has the training to make sense of them.

Thanks for any knowledge you can share with us.

Jen

[Barbara2]

I will finish a year of late Herceaptin on June 21st. My onc and I have not talked seriously about taking it for another year, but it has been brought up. I would like to stop the Herceptin at the end of my year, and possibly look at getting into a trial of some kind.

I also am going to ask to have my PTEN tested, as it would be nice to know and useful information for what trials I should be looking at.