HER2 Support Group Forums - View Single Post - Sisters with Mets...should I stop Herceptin?

mamacze · 04-27-2011, 01:39 PM

Hi all,
Ellie - side effects with Herceptin? Yes - after 7 years....sore joints, nonstop runny nose...but nothing compared to the alternative; right?!

Dr. Dang has "many" Her 2 patients with mets - although I didn't ask her for a count.

However if you really want to feel hope beyond belief; attend an annual meeting of the MBCN group (www.mbcnetwork.org). The conference organizers start each annual meeting by asking for a show of hands...how many have lived 1+ years with mets; 2 + years, 5 + years, 10 + years, and yes they go up to 15, 20 and even 30+ years. That moment ... looking around the room and witnessing all the angels who live everyday lives with this is a simply hope filled moment of bliss and well worth the annual trip.

And Karen, hang in here with us. It sounds like you are getting good treatment and so far have had a positive response.

Love and Hugs,
Kim from CT

04-27-2011, 01:39 PM	#29
mamacze Senior Member Join Date: Sep 2005 Location: Madison, Connecticut Posts: 638	Re: Sisters with Mets...should I stop Herceptin? Hi all, Ellie - side effects with Herceptin? Yes - after 7 years....sore joints, nonstop runny nose...but nothing compared to the alternative; right?! Dr. Dang has "many" Her 2 patients with mets - although I didn't ask her for a count. However if you really want to feel hope beyond belief; attend an annual meeting of the MBCN group (www.mbcnetwork.org). The conference organizers start each annual meeting by asking for a show of hands...how many have lived 1+ years with mets; 2 + years, 5 + years, 10 + years, and yes they go up to 15, 20 and even 30+ years. That moment ... looking around the room and witnessing all the angels who live everyday lives with this is a simply hope filled moment of bliss and well worth the annual trip. And Karen, hang in here with us. It sounds like you are getting good treatment and so far have had a positive response. Love and Hugs, Kim from CT __________________ 2001 - Stage 0, lumpectomy, radiation, tamoxifen 2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only. 2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle 2011 - Still Herceptin only and NED 2011, June - STOPPED Herceptin and kicked up my heels! 2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable. 2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only Received U of W vaccine clinical "booster" Vaccine 2022 On Herceptin and NED continues - WOOT WOOT!