Herceptin Time Period

[MAB1943]

Anyone out there on herceptin less than 12 months?
Need to know ASAP.
Thanks,
Mary

[kimber]

I was on for approx. 6 months. I chose to go off due to MUGA. Dropped from 73 to 50. I truly believed that was enough for me. The doctors wanted me to take a couple months off and go back on. I have decided against this. I am very optimistic that I had enough. Hope this helps you. - kim

[Believe51]

Ed was on Herceptin less than a year, 10 months to be exact. Muga scans were always great. Why are you asking, maybe we could help better, I am afraid I may have missed a previous post.>>Believe51

[Erin]

I was on for a total of 9 months. Stopped due to severe joint pain - even after switching to a weekly protocol. I also had a slight drop in my LVEF (by echo) which had me worried because of my stong family history of heart disease. My onc also convinced me that I had received 99.9% of the benefit I would get from a full year. I grappled with the decision for a while, but finally decided to go off when the joint pain got really bad.

[tdonnelly]

Hi Mary,
I have had 9 treatments (every 3 weeks) since starting in July 07.
Tamara
Invasive Ductal Carcinoma 11/2006

[Janelle]

I consulted with Dr. Slamon, the Herceptin guru and devoloper, and he said the one year mark is completely arbitrary and I should not worry if I can't finish out one year. He cited a European study where they are testing the effectiveness of a 9 week protocol. I wouldn't worry too much about this one.

[MAB1943]

thank you, I started chemo dec 15 2006, once every weeks for 4 treatments. when I started the herceptin it was w/taxol and I began that in Marach of 07, it was once a week for 12 weeks then it was herceptin solo once every 3 weeks to complete a year. In april I had a code blue incident during a stress test and was diag as cardiac arreythemia which is being treated. Every 3 months I got my muga scan and my percentage went from 98% before to 65% then 53% and the last one was up to 62%. My dr. took me off the herceptin for 1 month at that time and I missed 1 infusion then I also missed one of the 3 week herceptin infusions recently. I started in March 07 and will go until end of march 08 this year. On my last apt Jan 4 My onc.'s nursing assistant who is new gave me
the panic routine and told me the herceptin would not benefit me now, because I missed these treatments. She said if I continued on it would be of little benefit now because the data says 12 months of herceptin.
I wanted to get 3 more in to complete a year but she said it wouldn't work now. I was on herceptin with the taxol for 12 weekly treatments and then in June I was finished my weekly taxol/herceptin and started the 3 wk intervals of herceptin again. I was dumbfounded by her attitude.
When my dr came in I asked her about it and she said there was NO data to prove it would or wouldn't make a difference but that the data she had required 12 continuous months of herceptin. I reminded the onc that she took me off for a month and put me back on it again when I had the cardiac problem, her response was that it was medically necessary to do it so it was ok. I asked my onc to let me have the 3 more treatments until the end of march and she agreed, but it left me a little nervous. thanks for letting me vent.
Mary

[Janelle]

Okay, that nursing assistant should be FIRED. She has no idea if extra herceptin will be beneficial or not. Nobody knows yet as far as I can determine. I asked my onc about this last week and she said that the results from the HERA TRIAL (one year vs. two year protocol) probably would not be released for 2 years although many people expected the study to be published in March of 2008. She suspects this delay may be because they are not seeing a statistical difference yet in treatment time frames at this point which makes her think one year will be eventually shown to be as effective as 2 years.....That said, I say if want to finish out your year and your cardiologist is on board and it will give you peace of mind, then finish out the number of treatments you would have had if you were on the one year schedule. BUT, if they think there is too much risk to your heart then don't worry about it because they have no idea yet. I'm venting for you.

[MAB1943]

God bless the people on this site. It has been so difficult being on the herceptin, not because of the side effects but because no one can
give me answers, because no one knows, unless like me they are on it too.
I met a lady at the grocery store and she was on herceptin too and she had the same symptoms as me, so I wonder why so many doctors and RNS just don't want to hear what we are saying, after all, we are the ones on it, not them!
Thank you Janelle, for venting for me, and thank you for your response.
You have been so helpful. I would appreciate you keeping in touch either on this web site or my personal e mail which is mab1943@comcast.net
if you do e mail me then put herceptin on the subj line. Thanks so much again.
Mary (MAB1943)

[Sheila]

Mary
Just remember if you do go back on the Herceptin, you need to get a loading dose again just like the first time....even me after 4 1/2 continuous years of the magic, I would need a loading dose if I go off for awhile.

[BethC]

My oncologist said the same thing on Wednesday about 1-2 years as Janelle's. He thought it would probably just be one year not two.

[tousled1]

Standard protocol for Herceptin is one year. If your LVEF drops you are taken off Herceptin until such time that your LVEF comes back up. At that point you get another loading dose and can continue your year. there was a study that tested nine weeks of Herceptin. It was called the FINHER trial. Because of the small amount of women in the trial the doctors still rely on the year protocol. I know that there are currently studies comparing 6 months of Herceptin to 1 year. Herceptin is a relatively new drug and I don't think the doctors really know what the optimum amount of Herceptin is.