Going off herceptin,scared to death

[Alice]

I had a call from the Dr. today. I have been on herceptin alone since jan 06. My ejection fraction dropped 15% on my last echo. I was supposed to continue herceptin until sept but my onc wants to stop now.This was our agreement when she continued the herceptin I could continue for the year as long as my echos were good but if they dropped I would stop.Now I'm feeling a little scared. Herceptin has been like a safety net for me and now my safety net is gone.
Has there been any info about if herceptin affects the heart muscle if it can be used safely for recurrance?
I have read about sometimes people taking a break and going back on if they need to. I just feel like if I have a recurrance there are no options being er/pr-.
I was just getting used to life back in the world and not dwelling on cancer every moment now I am slipping back into a world of fear and I dont want to let it take over again. As many of you I worked very hard to get thru it all.
Any advice,suggestions,comments ect are appreciated Thank you,

Alice

[Sherryg683]

Try getting on Tykerb, I"ve read it is easier on the heart than Herceptin. You should be a candidate for it..sherryg683

[Jackie]

Alice,

I too was taken off of Herceptin when my EF dropped from 68 to 54 on my Muga. I was off for 9 weeks and then had another Muga and it was up to 57. My onc. put me back on a half dose for three infusions (every 3 wks.). I now will go back for another Muga next week. My onc thinks my Muga will cont. to climb with me on the lower dose. I don't know how this will effect how long I will stay on Herceptin. Talk with you onc. about retesting after a while and maybe you can go back on Herceptin.

Best to you,

[Cathya]

I was taken off herceptin 3 months ago and understand exactly how you feel. I am ER/PR+ but stage 3c. I would try for the lapatinib but also I would ask my onc if I could get the Serum Her2 test done regularly to monitor the her2 in your blood. I would also ask for a plan using this test as a monitor. That is to say, should it raise you would then go back on herceptin and continue monitoring your disease using the Serum her2 test. At least in this way you should be able to take early action if things start to go wrong before a tumor can dig in.

Cathy

[Cathya]

I forgot to mention that if you are hormone positive you could also ask for a CA 15-3 or another of the tumor markers. Although the herceptin could be keeping the her2 under control for an extended period of time (and thus your score on the Serum Her2 test could be normal) your hormones could be feeding cancer cells and this wouldn't show up on the Serum Her2 test.

Cathy

[Cathya]

Sorry....I see you are hormone negative. Reading the other articles on how this sometimes changes and just to be safe in any case......I would still have the other tumor marker done as well. Both on a regular basis. Best of luck. Keep us informed of what happens with you. God bless.

Cathy

[al from Canada]

Alice,

The really big option you have now is to start applying for some clinical trials where you may be exposed to technologies and drugs that give you even better bang for your buck. There are many trials involving HER2 and EGFR inhibition. For example:
http://oncologyknowledgebase.com/updates/cmbthrNov05.html

Good luck,
Al

[Alice]

Thank you all for you replies.That is a very interesting web site Al.The treatment I had was a clinical trial. It was very aggressive due to the nature of my tumors.I am getting to feel better about going off herceptin now. Does anyone know if you go on tykerb before any recurrance does it build a resistance?
I guess if you are on tykerb and have a recurrance while on it it must not be working in the first place.Sometimes I answer my own questions.
Thanks again, Alice