Have you had a recurrence after Herceptin or are you still NED?

Hi Sassa,

 Seems you and I have similar situations, my DX was 1.6cm and HER2+++ though.  I was wondering about the CT/PET, I finished my Herceptin almost a year ago, but my Onc has not ordered me to do a CT/PET, is this standard.  So far, I have only been asked to do markers and Mammi and Ultrasound.

Shelloz,

I believe that the use of CT/PET scan is up to the individual oncologists.  Some oncologists don't believe they serve any purpose as statistics supposedly show that outcome is the same when recurrence is diagnosed when the patient presents with symptoms as opposed to picking up a problem via CT/PET scan before any symptoms occur.

 I have had bilateral mastectomies so I do not do mammograms any more.  Three months after I finished my herceptin, my onc sent me in for a chest x-ray, did the standard blood work (including markers) and sent me in for a baseline CT/PET scan.

Unfortunately, the CT/PET scan found a hypermetabolic mass in my spleen which was eventually diagnosed to be a probable rare congenital splenic cyst.  I was sent in for a CT/Pet scan three months later to make sure there was no change in the splenic lesion. (there wasn't).  I now go every 4 months for the scan.  I don't know if my frequency is entirely due to the BC, I know my onc is keeping an eye on my spleen as the only way we would ever have a definitive diagnosis on the lesion is if I had my spleen removed or at autopsy.   I am not volunteering for either procedure

Carolina, we are at our highest risk for recurrence the first two years after finishing chemo (not the herceptin, the stuff before the herceptin).  Risks drop slightly the third year, by year five we are down to about zero percent risk.

I asked my onc if the year of herceptin affects when the first two years start (stretches the highest risk into the third year).  She said no, even with herceptin, it is still the first two years after finishing chemo (in my case AC).

Thanks, Sassa, esp. for the info that it is after chemo not after herceptin. I finished chemo in Nov. 2007, so I'm going into my second year. It's so scary. Why can't we have Herceptin booster infusions once a year or once every 6 months? My concern is the LENGTH of the residual benefit of Herceptin after it is stopped. Are there any studies on that? And I mean biological studies--looking at the cells to see if the receptors are still being blocked 6 mos, 12 mos, 18 mos down the road.

While our highest risk is the two years after chemo, my onc started the CT/PET scans after I finished the herceptin.  She is making sure that if the herceptin was holding anything in check, that we find out asap during this second year.

Carolina, pharmacokinetic studies of  herceptin found that herceptin has a long half life (a mean of 11 - 23 days) so it is possible to take around three months after the last dose for the circulating levels of herceptin to clear the body. However, while there may still be circulating level for those three months, the level is of decreasing effectiveness  at blocking receptors.

Carolina,

When I read the studies, I was a reviewer at the Center for Drugs at FDA and the information was included in the investigational drug application (not available to the public).

The following links will give you information on the drug:

The package insert has clinical pharmacology in Section 12 

http://www.gene.com/gene/products/information/pdf/herceptin-prescribing.pdf

The National Cancer Institute has a information page on trastuzumab (Herceptin).  There are also links to the various studies done on the drug.

 http://www.cancer.gov/cancertopics/druginfo/trastuzumab

The drug company also has a website for herceptin.  If you go to the section for health professionals, you will find more technical information.  The section also has a nice chart that shows how the risk of recurrence levels off after three years.

 http://www.herceptin.com/index.jsp

I was dx'd a year ago (had my first mammo on my remaining breast and it was clear! Yay!) I'm on Herceptin until next April and so far so good.To any of my sisters who have had a recurrence - you are in my prayers always!

Hi Carolina,

My diagnosis is very similar to yours.  Did you choose to do a ooph due to BRCA tests?  I haven't had surgery yet, but I have also chose bilateral mast.  Any side effects from the herceptin?

Thank you so much for your advice.  I am so new at this...P. 

hi egal, sorry the herceptin failed you.  What treatments did you initially receive?  and have you tried tykerb?  wishing well.  Tina

Tina,

  I initially had mastectomy on right breast with expander, 4 AC's, 4 Taxotere, 6 weeks rads, one year Herceptin and profilactic mastectomy with expander on left breast.  Had saline impants on each and cancer side is SO uncomfortable.  No one knows why!  Last Herceptin was May of 2008 and on Sept. 30th, 2008 I was dx'd with brain mets.  Had GAMMA Knife radiation October 6th and had an MRI on Dec. 6th.  The large tumor (4 cm) has shrunk by nearly 1/2.  Now have rib tenderness and pain in lower abdomen.  Had rib x-ray, no cracks or breakage.  I had scans in November 2008 of bones, abdomen, and lungs...they were clear.  So onc doesn't think the rib and abdomen is cancer.  I see him next week and we'll decide what to do next.  IT does SUCK!!!

bump back up - Who has had a recurrence since completing a year of herceptin?

Hi

Dx Jan 1999, so in 10th year.  Stage IIIa, one year of Herceptin.  NED. 

Keep the faith.

-Gabrielle

Sassa, I was told differently. I was told by the John's Hopkins Breast Center's "ask an expert" nurse that answers the website questions (Lillie Shockney) that the 2 years starts after active treatment and she said Herceptin is considered active treatment.

edit- I found the post and am reposting it here-

Dear Lillie, I just read in another post about starting the ''2 year time out countdown'' after the completion of herceptin. Can you give a little more detail why? I also was StageIII, and received chemo, rads, and 1 year herceptin, and have been counting my ''time out'' from my surgery. I will be 2 years out from surgery this Dec, but am only 6 months out from completing Herceptin. Thanks Lillie.

A:

Herceptin is still considered active treatment and for women with locally advanced disease, stage 3, it is usually recommended to start the counting after active treatment (excluding hormonal therapy) has been completed. LS

I dunno either, lexislove. Lol

What does make sense to me is that while you are getting Herceptin, any bc cells are being held at bay (starved of their enzyme). By the end, you hope it knocked all the stray cells. I know I felt a "ohh, I'm not  being protected anymore" after finishing Herceptin, but maybe it's state of mind. Now I'm just kind of confused.

Oh, I wasn't early stage but I am ned.

Makes sense to me.