Length of Time for Herceptin

Shannon · 11-15-2005, 10:17 PM

Good Evening Ladies..

I often come here (my safe place) to get some advice, kind words or just plain ol' hey.. Im going through that too..

Once again.. I find myself in need of all three... here is some history..

I was diagnosed at 33years old with stage 3 breast cancer. I had 5 nodes out of 17 positive. I had 2 surgeries to remove the cancer, only a lumpectomy. I completed 4 AC and 12 taxol rounds, then 8 weeks of radiation. I was in the clinical study... but in the arm that got standard treatment and observe..THEN... in may, I was told I could get HERCEPTIN as they were releasing it early from the study.

Im not hormone positive, so I will not get any hormone therapy to follow.. When I began this crazy adventure, I was at a 58 with my MUGA.. after chemo I dropped to a 42. Then after 6 months, flax seed and CoQ10 pills I went back up to a 52. I have had both MUGA and ECHO's. After 14 weekly doses.. I was pulled from Herceptin as my MUGA dropped to 44. Yeah, a few people are inpacted by Herceptin, I guess Im one.

I show NO symptoms, and just had an ECHO yesterday that is GREAT!!! So, as of Monday, I go back in to chat with the doctor, and I have a chair reserved to get HERCEPTIN...

Whew, so after all of that.. here is my question...

Ive been off.. and while I was in the study, they said any time away.. missed doses, would not be made up.. it was a straight 52 weeks. When I go back.. should I push for my 52 weeks to start over? Is it ok to have missed.. 9 weeks...? I want as much as i can get.. there has to be a reason they want you to get 52 doses.. these are all questions I will be asking my doctor.. but I wanted any insight from you ladies so I go in fairly firm on something...

Thoughts???

Shannon

Becky · 11-16-2005, 07:26 AM

I was always under the impression that if you had to stop, you picked up where you left off. For example, if you had to stop after 20 doses, they "owed" you another 32 doses to go to 52 doses.

Best regards

Becky

doh2pa · 11-16-2005, 07:52 AM

Hi Shannon,

I think we are all still waiting to see what future recommendations will be regarding how long any of us should be on herceptin. My onc says a year to start but we will reevaluate the data when my year is up. I think this is a sound approach. Even if you have to come off study to get it. So why not just continue, and then when it comes closer to the end of your course, look at the data with your onc, and see where you go from there. So much is happening every day in this field, it makes sense to me to wait and see.

Wishing you much success and peace,
Donna

Ginagce · 11-16-2005, 11:37 AM

I also started the herceptin last spring after they released it from study/mets only.

My oncologist has said I will be on it for a year, "give or take". We too are going to do the year and then see what the data out there is saying.

You know how much can change in a year with breast cancer.

So unless it's an insurance issue, I don't think the decision has to be made right now.

Best of luck to you.

Gina