After 9 years ... I have been released from Herceptin!

Jen - This is absolutely fantastic news! I'm so over the moon happy for you. Please continue to check in with us and let us know how you are doing. I so enjoy your posts. Much love!

You ladies are giving me hope! I may have to worry about my decision to have quit working full time if I wind up being one of the few. That would be a good thing to have to worry about though...

Shutterbug73 glad to see you, we headed down the same path right around the same time

Hello, sorry I hadn't been on in awhile. I had stopped Herceptin & Perjeta June 2013 due to a health issue. We didn't know what was wrong & was to sick & getting sicker till I got put in the hospital & found out I had a staph infection in my lung & took a bit treating it & couldn't take any other medications so had to remain off. Since it had ended up being 6 months without re-occurance we decided to see how long we could go. Was a great 3 years. Re-occurance in same spot in my left breast where had had a lumpectomy. After doing chemo again & double mastectomy found cancer in right as well we didn't expect. One lobular other non-lobular. But we just don't know since unfortunately the tumor board had turned down radiation on my left breast & only did radiation to my medial stinum. Back on Herceptin and Perjeta but was a nice 3 years off treatments. Always hope to hear more of success of going off & if ever could be a possibility again. So far doesn't sound like a chance my doctors want to take again but I still can't help but hope still. We just never know. I'd love to hear about if others have gone off of it successfully as well . Congratulations & best wishes.

Jen: I too am thrilled for you. And the fact that your oncologist thinks that the chemo/trastuzumab combo and then trastuzumab only might be curative.

In March 2017 my oncologist here in Peterborough came to the same conclusion. I found that the drug, while it had saved my life and I remain truly grateful for it, was becoming onerous because of the ongoing side effects. Since I had been NED since the combo given in 2009 and and been on trastuzumab only every three weeks, I told her that surely there were better ways things to spend healthcare dollars and my time.

So the plan is followup scans in November before my appointment with her (I had been seeing her every three months).

Would you be able to point me to the study at University of Michigan?

It is so lovely to be an outlier or exceptional responder!

Hello Jen,

I'm so thankful to hear from someone else that is also stopping treatment. December was my last herceptin infusion. I've been getting it for almost 10 years. Very scary, but feel it's time.

Dear All long-time-thrivers! This is an old thread but it'd be interesting to know how you are doing and how many more years you are NED? Or maybe there are new threads already that highlight your journeys?:) All the best,

Saulius