HER2 Support Group Forums - View Single Post - Seeking advice from Vaccine trial participants

mamacze · 03-13-2013, 08:26 AM

Hi JillaryJill,
I was one of the early participators in a vaccine trial in Seattle (2005). I am a high Her2 expresser. I also had GM-CSF. I had no side effects and was told 2 years later that i was a "responder".
That said, I appreciate your caution. Judging by your signature, you are NED now. You are appropriately worried about being in the minority that does experience significant side effects. On the other hand, if you can develop a lasting immunity to Her 2, you may prolong your NED for many years and perhaps prevent recurrence. Such an irresistible siren call. If you decide to move ahead; please be assured that at least in Seattle, they do monitor you very closely.
You are wise to give it much thought. i think the experiences of our members has been widely positive. God speed in your decision making.
Love and Hugs,
Kim (from CT)

03-13-2013, 08:26 AM	#9
mamacze Senior Member Join Date: Sep 2005 Location: Madison, Connecticut Posts: 638	Re: Seeking advice from Vaccine trial participants Hi JillaryJill, I was one of the early participators in a vaccine trial in Seattle (2005). I am a high Her2 expresser. I also had GM-CSF. I had no side effects and was told 2 years later that i was a "responder". That said, I appreciate your caution. Judging by your signature, you are NED now. You are appropriately worried about being in the minority that does experience significant side effects. On the other hand, if you can develop a lasting immunity to Her 2, you may prolong your NED for many years and perhaps prevent recurrence. Such an irresistible siren call. If you decide to move ahead; please be assured that at least in Seattle, they do monitor you very closely. You are wise to give it much thought. i think the experiences of our members has been widely positive. God speed in your decision making. 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!