herceptin forever?

PinkGirl · 09-16-2007, 07:17 AM

Why do we only get a year of herceptin before we develop mets? Why don't we just keep taking it? I know about the cardio problems, but why not keep taking it if your heart is okay? Is this a dumb question?

Mary Anne in TX · 09-16-2007, 09:25 AM

I have the same question! I'm working right now to continue after 14 months. My insurance is denying me again, but I will just keep fighting if my onc will help me do so. Could be mute ques. if my markers go up one more notch. But I do agree. Why not, if our heart says yes? ma

Andrea Barnett Budin · 09-16-2007, 10:26 AM

Pink Girl and Mary Ann, I totally agree. ABSOLUTELY NOT A DUMB QUESTION. My oncs said to stay on H longterm in '99, when I could no longer take Taxotere. I have not gotten any flack from my insur co on this THANK GOD. I have rechecked w/my 5 oncs and they still concur. Let's not try and fix what isn't broken. Dr. Pegram (when he was at UCLA, told me in Feb '06 that as long as I could handle it physically, psychologically and financially -- I should go for it). I do the ECHO annually now, as per Pegram, as he says if I were going to have a problem, it'd have occurred by now. I do ev 6 mnth CT scans, as per my oncs and ev 6 mnth transvaginal pelv sonos (to make sure my ovaries are beautiful, etc.). I do bone density tests ev 2 yrs, just had one and I got "your bones look beautiful". I asked my Boca rock star onc re brain mets. He says if they haven't shown up by now, he's not concerned.

Please read the LONGTERM HERCEPTIN thread from today for more. And please let me know how you fare in your battles re this, ladies! I see it as insulin for a diabetic, keeping the misbehaving gene in line and mets at bay. A totally sane concept. I would not stop taking my bld pressure meds cause I'm in the normal range. We all know it'll go up w/o the meds.

I wish you success. Do not give up. Get an onc that is in agreement w/this plan and who'll stand behind you! I am with you 100%!!!!! Sending you loving energy and prayers for your continued WELLNESS! Keep us all posted on this. It is key to living a long life and seeing our grandchildren married and having babies...
Andi

Chelee · 09-16-2007, 02:59 PM

It certainly is *not* a dumb question by any means. I know I *wanted* do continue and stay on herceptin past by one yr mark. I fought for it. My onc said no, & my 2nd opinion onc said no. Since the HERA trials had been pushed back they both used that as an excuse. (Sometimes I feel like its about *them* saving money.) JMHO Since I had positive nodes & could NOT have radiation...I thought it was very reasonable to continue on herceptin. I wanted to complete at least two years of it.

My ECHO's were great, so I was disappointed being denied. The long term herceptin patients seem to being doing great on it and most have remained NED...and I have to credit herceptin for it. If something is working...why go off it. To me this is serious business...we aren't just trying to ward off a cold. Joe said the results of the HERA trials are due out in December...I'm looking forward to that.

Chelee

Brenda_D · 09-16-2007, 03:31 PM

My Onc said I will get it for 1 year.

I also wonder what determines whether you get Herceptin alone or Herceptin with a chemo agent?

PinkGirl · 09-17-2007, 09:26 AM

I'm not sure how they decide when to start the herceptin. I had 4 treatments of FAC and then 4 Taxol. I started the herceptin with the first taxol. The "A" in FAC is also one that can wreck your heart, so maybe it's not good to have Adria and Herceptin at the same time. Maybe someone else knows about the chemo/herceptin combo.

Joanne S · 09-17-2007, 09:25 PM

see http://www.her2support.org/vbulletin...33168#poststop

Sherryg683 · 09-18-2007, 06:03 AM

I think a big part of it not being given longer than a year for early stage breast cancer is insurance. Herceptin is not cheap. The doctors are not sure of the benefits of giving it longer than a year and this for sure will cause the insurance companies to say NO to anything longer. I was diagnosed Stage IV and have been taking it weekly now for almost 2 years and will continue indefinately. I have had no problems with insurance. I remain NED for almost 2 years now, I feel the Herceptin must be doing its job for me. ...sherryg

Andrea Barnett Budin · 09-18-2007, 09:21 AM

Barbara, I think it fabulous that you are doing so well. Stay NED.

I just wanted to add an interesting caveat here. I saw Pegram in Feb '06. Perhaps because of my feeling that Herceptin is like insulin for a diabetic, and I would feel most uncomfortable having it taken away, here is his response to my question to him re staying on H. (I also read an interview I googled from some Med Journal that stated the same thing.)

As long as you can psychologically, physically and financially afford to remain on H -- that is what I think you should do. Paul was w/me and we both heard this loud and clear, as I was considering stopping. Tempting though it is, I am sticking w/the program. I have not had a met since being on it (in '98). Have been on Vit H ever since, NED. Something to consider. I guess it's a personal choice to a large degree. I also checked w/3 other oncs on this and this concurred -- if it isn't broken, don't fix it...
Andi

new shoes · 09-18-2007, 10:20 AM

How very timely! My onc stopped by my chair this morning while I was getting H. He just stopped to say "hi", but I pegged him again about HIS decision that I receive only 1 year of treatment. He pointed out again that there was nothing new in the literature that suggested that more than one year was beneficial. I suggested that the presentations in San Antonio in Dec. might recommend otherwise. His response "Then we will dicuss it again in Dec." If he thinks I'm dropping this until then he really doesn't know me well.

I haven't even looked into weather my insurance will pay for it after the first year. But, I have a feeling that if my onc doesn't approve it I'll have a real battle on my hands.

Barbara2 · 09-18-2007, 10:28 AM

Please note that my question to Dr. Pegram was regarding length of herceptin use for early stage NED, in other words for those who have not yet had mets. For patients with mets, herceptin and how it is used is a different issue. Hope that helps to clarify...

Donna · 09-18-2007, 10:30 AM

Hi Amazing Group,

I only received 7 months of Herceptin and was taken off for LVEF issues. I met with my oncologist last week to see about continuing now that my LVEF is bouncing back to 61. We decided to leave it here, no more herceptin based on:
1 - the FinHer study
2 - the HERA study was done with women who had completed standard chemo and then Herceptin was given long after chemo ended, not concurrently
3 - she indicated that the completion of the HERA study coming out this December is going to concur that a shorter regimen works - she is really cutting edge when it comes to being well versed in all the studies going on out there
4 - when I asked if I had a shot at having no recurrences she gave me a resounding yes! saying that my regimen ACT+H hit the cancer at the genetic level

I am ER 99%+ PR 10%+ and Her-2Neu 3+ - Stage II-B.

I may have some of this wrong but it is the best explanation for what I understand. I think for Herceptin More may not always be Better - it depends on the specific situation - which hopefully our oncologists figure out and recommend for us.

My biggest fear is that someday soon it will be the insurance company figuring out our regimens based on averages instead of our oncologists based on the individual.

I am banking my life on having had enough Herceptin - but we did also discuss what the next step would be should there be a recurrence.

But ultimately - who the heck knows?????????????

Best to you all,

Donna

Margerie · 09-18-2007, 11:43 AM

On the issue of concurrent vs. sequential treamtent and the HERA trial- I found this today when I was looking for some 3 week vs 1 week dose study for another thread. I did not sleep last night, so maybe someone with more brain power can decipher- but it looks like they are comparing both?

http://www.pharmac.govt.nz/pdf/290607d.pdf

Andrea Barnett Budin · 09-18-2007, 12:15 PM

I slept well last night, w/some sleep aids, but my eyes are crossed trying to read your link, Marjorie. So don't count on me to make sense of it. But you can count on me for most anything else. Any time. I do think I recently read that ev 3 wks works better than 1X a wk. Did 1X a wk from '98-01. Then and still -- ev 3 wks. I have been told I have told that I have a highly aggressive form of bc. So for me this is the only route -- longterm chemo for the rest of my life. I can live w/that, no pun intended. In fact, I am not willing to risk my life going off it, having been dancing w/NED since '99, based on any study. Besides I have 4 oncs who concur.

Jennifer NEW SHOES -- do you have more than 1 onc? You need someone who has your back, is willing to fight for you. Are you metastatic? Now I forget your profile. Love your stubborn fiesty attitude anyway.

Andi

chrisy · 09-18-2007, 09:15 PM

I think it is a different situation being an early stager vs. dealing with metastatic disease. The 1 year of Herceptin (or 9 weeks in Finn-Her study) has shown to decrease the risk of recurrence by 50% - which is a pretty big impact. There is no data to show any further risk reduction with longer treatment, and in fact the question now seems to be if LESS time is just as effective.

The women you read of being on herceptin indefinitely are generally Stage IV, so it's a different ballgame.

Keep in mind, taking Herceptin is not without risks itself, which is clearly worth it in the metastatic setting but maybe not for early stage.