HER2 Support Group Forums - View Single Post - Response to my request to continue herceptin.

Chelee · 05-03-2007, 12:25 AM

Andi, You have been through alot & it sounds like you have made some great decisions & done so well. Your post is very encouranging. It sure paid off that you & your husband were on top of everything...that's half the battle as you know.

I realize you were DX stage IV in 95, but I noticed you talked to Dr. Pegram sometime last yr. His thoughts on your case was to stay on herceptin. He seemed to be for maintenance herceptin in your case. (Maybe since you've done so well he feels there is no reason to take a chance on stopping it as long as your ECHO's stay in range.) Have you been on herceptin 4 yrs plus now? I know of quite a few women that have done great & stayed NED on herceptin alone. But his response to Barbara was they weren't for maintenance herceptin. (But there is probably alot he has heard since last yr that might of changed his thoughts on this?) Lets face it...they really just don't know what's better yet or I think we would of heard by now? At least I hope so. I notice Dr. Pergram also told you they have lots of people on long term herceptin. (Which we know is true because we have quite a few of them right here.) I wonder why they are for some staying on it pass a year & not for others? (Confusing at times depending on who you talk too...so many different opinions.) It must be hard because there is no definite answer yet. (guess we have to wait for the final studies as hard as that is...until then do what we think is best for ourselves.) So many decisions to make along the way.

Thanks so much for your reply Andi...I really appreciate it.

Chelee

05-03-2007, 12:25 AM	#17
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Andi, You have been through alot & it sounds like you have made some great decisions & done so well. Your post is very encouranging. It sure paid off that you & your husband were on top of everything...that's half the battle as you know. I realize you were DX stage IV in 95, but I noticed you talked to Dr. Pegram sometime last yr. His thoughts on your case was to stay on herceptin. He seemed to be for maintenance herceptin in your case. (Maybe since you've done so well he feels there is no reason to take a chance on stopping it as long as your ECHO's stay in range.) Have you been on herceptin 4 yrs plus now? I know of quite a few women that have done great & stayed NED on herceptin alone. But his response to Barbara was they weren't for maintenance herceptin. (But there is probably alot he has heard since last yr that might of changed his thoughts on this?) Lets face it...they really just don't know what's better yet or I think we would of heard by now? At least I hope so. I notice Dr. Pergram also told you they have lots of people on long term herceptin. (Which we know is true because we have quite a few of them right here.) I wonder why they are for some staying on it pass a year & not for others? (Confusing at times depending on who you talk too...so many different opinions.) It must be hard because there is no definite answer yet. (guess we have to wait for the final studies as hard as that is...until then do what we think is best for ourselves.) So many decisions to make along the way. Thanks so much for your reply Andi...I really appreciate it. 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.