Stopping Herceptin

MuggleBorn

I started Herceptin in April 2015 had normal echos until Dec when my EF dropped to 47. Cardiologist put me on Carvedilol and EF now back up to 62. However Onc has now decided not to resume Herceptin. I was initially told treatment would be a year, and then we'd reevaluat. It scares me stopping Herceptin, now the only thing I'm on is Tamoxifen. I've had good scans for a year now so that tells me what we've been doing is working, why stop?

I read all of these messages about women that are 10+ years out and on Herceptin. I don't read any about women that long out and only on Tamoxifen. Feeling scared...

Moderators

Dear MuggleBorn, Welcome to the community. We are glad that you reached out here and hope that you will soon hear from others and gain support and information. We hear that you are scared but you have come to the right place to connect with others who have similar stories. Keep posting. The Mods

Fitztwins

I was on Herceptin and Femara for 18 months when I had progression. I thought shoot! I didn't even get 2 years on herceptin.... After a clinical trial (TDM1) and had progression I moved on...

I had a good run on tykerb. with a AI... almost 2 1/2 years!! Some nasty side effects (diarehha) but tolerable. Give a chance for the muga to get better.

So, it is scary when a treatment fails us. maybe ask about tykerb and then after a while you could go back to Herceptin.

Cafelovr

I have been on Herceptin for over 6 years (since January 2010). I had to take one 3-month break because of jacked-up EFs. I have Echos every 4 months, and I take Carvedilol and Losarten. I did talk to my oncologist at one time about going off Herp because I was afraid my body would become immune to it, but his philosophy is if it works, and I'm still NED, let's not rock the boat. I've been NED since May 2010...almost 6 years!

It's interesting...at the time, Herceptin only was the first line of treatment. Now there are lots of new drugs out there for us HER2+ patients! I also take Tamoxifen. Where are your mets? Are they under control???

bikergal

I would get a second opinion if I were you. Now that your EF is normal, I would think it is time to consider resuming Herceptin. I have been on Herceptin for 9 years (along with other drugs)!

MiracleMileM

I've been receiving herceptin infusions since December 22, 2007. EFs all stable. NED since about September of 2008. About 18 months ago i went to every 4 weeks infusions instead of every 3 weeks. In part that was because i was getting Xgeva shots every 4 weeks and I did not like going in twice a month. My oncologist was chary about the change in light of no studies or protocols on 4 weeks versus 3 weeks. But I have remained stable so no current objection. He prescribes the same dosage as before. I sense that the herceptin remains at therapeutic levels because my herceptin drippy nose etc. continues unabated in the week before infusion. So Muggleborn, talk to your oncologist about returning to herceptin every 4 weeks or once a month at least to start. I'm with Cafelovr. Insist on sticking with what works; HERCEPTIN. I would never risk going off herceptin. I credit Herceptin with my being here at all. In my opinion too risky to stay off herceptin.

Best regards.

Cafelovr

Any word? I'm just curious what the final decision was. Are you still on Herp?