Another Herceptin Question!!

I was wondering how many ladies are or have continued on with Herceptin even though they are considered NED. I am starting up on Herceptin after a 7 month break as maintenance. I did Herceptin weekly for one year after a local recurrence. My last round of scans in November were all clear but I need my Herceptin security blanket. Any stories???

[Lolly]

Hi Karen, I was on maintenance Herceptin for 32 months after my first recurrence was resolved with Navelbine/Herceptin combo. I was on weekly maintenance for 8 of those months, then moved to 3 weekly until second recurrence was confirmed at the end of May 2004. I resumed Navelbine/Herceptin weekly until October, and am considered to have no clinical evidence of disease (still have some enlarged nodes which don't show up on CT, but are suspect even though apparently stable). So I'm continuing on weekly maintenance Herceptin but am also enrolled in the Her2 vaccine trial at University of Washington in Seattle.
I felt that maintenance Herceptin kept me NED, and that if I hadn't been on it I would have experienced the second recurrence sooner. Whether it will work as well to keep me NED for a long period this time, I don't know. My fear is that the constant exposure to Herceptin has helped the cancer to form an "immunity" to it, and therefore it won't be as effective, but time will tell. The vaccine may prove to be the boost that the Herceptin needs, but there will really be no way to know until/if I go without recurrence for a longer period of time. I feel that if I had to do it over again, I wouldn't change anything and would still opt for maintenance Herceptin, as indeed I'm doing this time. IF I have a long period of remission, I will think seriously about going off Herceptin as a test, but not for now!

Love, Lolly

Thanks for answering Lolly. I, too, worry about becoming resistant to the Herceptin like your body can to antiobiotics but my doctor at Yale Cancer Center says there are no studies that show that theory with Herceptin.

Hi Karen, just wanted to let you know that I have been NED since going off Herceptin 2 years ago (in March 2003). Following my diagnosis (Stage III, large tumor, many lymph nodes involved) I received A/C, weekly Taxol, radiation and weekly Herceptin for one year. I really think the Herceptin worked for me and it was definitely scary ending my treatments (had to as part of a clinical trial), but as time passed, the fear diminished. My onc. says they don't know the optimal treatment time for Herceptin yet, but at least in my case, it seems that getting it helped prevent or at least delay any recurrence...I know you have a tough decision to make and I can certainly understand why you would want to keep taking it as a security blanket (I still have my port in, because I'm superstitious about having it taken out), but just wanted to let you know there are people out there who are still NED even after they stopped Herceptin. Hope this is helpful, Audrey

[StephN]

Hi Audrey -
You are lucky to have gotten the Herceptin early in your treatment - I feel that if I had it, maybe I would not have had such a fast metastesis. So, I stay on it since becoming stage IV, and kicking the mets out of my liver. Been on 3-weekly for 32 months, and still on it while I fight my 2 brain mets out.

If you are Her2+++ and high grade for your tumor, I would definitely get all the Heceptin you can. Cancer cells are very sneaky and can hang around in a dormant state for a long time - years. I know this from personal experience as I have been NED for 32 months and brain mets showed up this Jan. Those cells got there 3 years ago during my liver mets as that is the last time I had any cancer cells floating around.

You can never be too careful with this disease.

I stopped Herceptin July 2004. I have been NED since surgery for my mets dx in May 2003. After the surgery I did Navalbine/Herceptin for the first nine months - then just Herceptin for the next nine months.

My onc. gave me a choice of staying with the Herceptin. I wanted a break from going to the chemo lab. So far - so good.

Peggy in Florida