Suspending Herceptin
 

Jan 2001. Bilateral mastectomy (BC in both breasts); 11/18 Ax Lymph RHS + 8 Ax Lymph LHS; portacath in situ. Chemo + Rad then Arimidex on completion. In remission until:
Aug 2003. Mets to bone in spine and pelvic, HER2+. Taxotere, Zometa, Herceptin treatment. Now stabilized.
I've been on Herceptin over 3 years now and because my scans and tumour markers have been stabilized for 2years, I'm being asked if I had considered coming off it - possibly to 'wait and see'! Presently my family is saying no but after further scans that still say that all is stable, I am now considering my oncologist's suggestion.
Is there anyone else in a similar situation? As yet in Australia, I don't know of anyone or anywhere else for that matter!
We visited UK in 2004 and I took my Herceptin with me. I was asked how long did I think I needed to continue with Herceptin, perhaps they thought I might know something they didn't!
I know if I did agree, I would like to be monitored very closely, but I would value others' opinions.
Barb

Barb,

I was dx'ed in 1999 at stage IV and have benn receiving Herceptin since August 1999. My pathology report showed that I was HER2 3+ "very highly positive" were the words they used. I had the IHC test as FISH was not yet available.

Last year at ASCO and San Antonio, I questioned several leading researchers about discontinuing or lowering my dose of Herceptin due to the fact that I was highly positive and had no recurrances other than CNS tumors. Although they all said that my theory was interesting, they also said that there are no studies that would support this. They all said CONTINUE HERCEPTIN.

On my own, I started receiving Herceptin every 4 weeks instead of every 3 weeks. This past January I was diagnosed with a <1 cm brain tumor. I was treated with Gamma Knife and am now back on the three week cycle. I do not know if the tumor was related to this.

I would suggest to stay on Herceptin.

Hugs
Christine

Barb, I've had "only" mets to local, regional and distant lymph nodes, but have been on Herceptin since 2001, with no "Herceptin Holiday". At times I've been in remission, at times stable, but always on Herceptin. Now that I've showed progression within the same "field" of mets, I've dropped Herceptin and moved onto Tykerb.

I believe I've not experienced more serious mets because my onc acted quickly to start me on Herceptin at the first sign of activity after primary treatment was finished, and also believe Herceptin has served me well to keep my disease contained all these years.

<3 Lolly

Hi Barb,

I have been struggling with the notion of taking a Herceptin break too. We monitor my CA15-3 and CEA every 3 weeks when I get my Herceptin. My tumor markers have gone above the normal mark a few times, but there has never been anything seen on scans other than the small brain tumor I had Gamma Knifed in 2005. At times I struggle with my energy levels and think that maybe a Herceptin break would give me a boost.

After reading Christine's reply, I really feel I should just leave well enough alone for now. Had a Muga scan yesterday and still waiting for results. So far, I've been very lucky not to have had any heart issues.

We just have to face up to the fact that we are PIONEERS!

Kim in CA

Hello Ladies of Herceptin,

Although I was dx'd with Stage l, I still struggle with the fact that I discountinued Herceptin after a year (Sept 2006). My scans were all clean, but the chances of a recurrance still cloud my mind... I wonder if I should have stayed on it even when there are no mets...
Any thoughts ?

maria (MTS)

Hi Maria,
I don't think you should worry too much, as you did receive the "Gold Standard" in regards to early stage Her2+. Many of us who've recurred didn't receive Herceptin for early stage as it wasn't approved for that use when we were diagnosed, so unfortunately had to wait for recurrence...
If you want to be proactive in keeping recurrence on the back burner of your mind, keep an eye on the Her2 Vaccine Trials, some of them are moving into later phases and may allow early stage volunteers to enroll.
Hope this helps!

<3 Lolly

Thank you Lolly.


maria