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Chelee · 10-22-2009, 12:13 PM

Hi Alice, I believe I was orignally stage IV from the get go too. I had both hips lighting up on my 1st baseline PET/CT back in 06. They brushed it off as several different things and never did the recommended MRI follow up scans to rule out mets to hips. Now we find out I do have bone mets to femur.

I fought to stay on Herceptin back then as I believed it would keep me NED. I even got a 2nd opinion on continuing...but both onc said no since there was no data at that time that proved more then a yr of herceptin would be any better then one year. So I finished my yr and it ended. But now 3 yrs 9 months later I have had a recurrence. I immediately started on a loading dose of Herceptin/Zometa. And in 2 weeks time ran my tumor markers and for the 1st time in a year my TM'ers went DOWN just from herceptin alone! So I do know for me personally herceptin DOES work. It has to be your choice...but if you can continue the herceptin I know I would in your situation after whats happened to me. My ECHO's were all great while on herceptin and I really wished they had let me stay on it since now I really believe I was stage IV. So many decisions...its not easy. Good luck whatever you choose to do.

Chelee

10-22-2009, 12:13 PM	#8
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Dr thinks I should stop Herecptin? Hi Alice, I believe I was orignally stage IV from the get go too. I had both hips lighting up on my 1st baseline PET/CT back in 06. They brushed it off as several different things and never did the recommended MRI follow up scans to rule out mets to hips. Now we find out I do have bone mets to femur. I fought to stay on Herceptin back then as I believed it would keep me NED. I even got a 2nd opinion on continuing...but both onc said no since there was no data at that time that proved more then a yr of herceptin would be any better then one year. So I finished my yr and it ended. But now 3 yrs 9 months later I have had a recurrence. I immediately started on a loading dose of Herceptin/Zometa. And in 2 weeks time ran my tumor markers and for the 1st time in a year my TM'ers went DOWN just from herceptin alone! So I do know for me personally herceptin DOES work. It has to be your choice...but if you can continue the herceptin I know I would in your situation after whats happened to me. My ECHO's were all great while on herceptin and I really wished they had let me stay on it since now I really believe I was stage IV. So many decisions...its not easy. Good luck whatever you choose to do. 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.