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

Chelee · 01-26-2011, 01:12 AM

Kim,
Lots of good feedback here and I know the 2nd opinion will help. Elaine's idea of spreading out the Herceptin might be another good option till you decide what you want to do? I know Jhandley (Jackie) would spread her infusions out to 4 or 5 wks at a time due to the long drive for Vit H. For those ladies that might run across this thread at a later date, I just wanted to clear one thing up. Jhandley (Jackie) was on Herceptin for 4 yrs when she stopped it & had a recurrence...not just the 18 months that was mentioned. I checked her old posts. So Jackie did stay NED the 4 yrs she was on Herceptin...and recurred 7 months after stopping it. She hadn't hit that 5 yr mark some of our onc's talk about...but close to it.

However Steph, Andi and Christine had been on herceptin much longer then Jackie when they stopped Herceptin. They all passed that 5 yr mark and more. I know it can't be an easy decision..but I wish you luck with your 2nd opinion at Sloan, and Dr. Disis...at least you can take your time to decide...it helps when your not in a hurry. Here's to yrs of continued NED.

Chelee

01-26-2011, 01:12 AM	#18
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Sisters with Mets...should I stop Herceptin? Kim, Lots of good feedback here and I know the 2nd opinion will help. Elaine's idea of spreading out the Herceptin might be another good option till you decide what you want to do? I know Jhandley (Jackie) would spread her infusions out to 4 or 5 wks at a time due to the long drive for Vit H. For those ladies that might run across this thread at a later date, I just wanted to clear one thing up. Jhandley (Jackie) was on Herceptin for 4 yrs when she stopped it & had a recurrence...not just the 18 months that was mentioned. I checked her old posts. So Jackie did stay NED the 4 yrs she was on Herceptin...and recurred 7 months after stopping it. She hadn't hit that 5 yr mark some of our onc's talk about...but close to it. However Steph, Andi and Christine had been on herceptin much longer then Jackie when they stopped Herceptin. They all passed that 5 yr mark and more. I know it can't be an easy decision..but I wish you luck with your 2nd opinion at Sloan, and Dr. Disis...at least you can take your time to decide...it helps when your not in a hurry. Here's to yrs of continued NED. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options. Last edited by Chelee; 01-26-2011 at 01:15 AM..