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

Chelee · 04-27-2007, 01:31 PM

As some of you know I finished my yr of herceptin but since I could NOT have radiation I had hoped to continue on herceptin & finish a 2nd yr at least another 6 months to get me through my first two yrs from DX. At first it sounded like it would be no problem. I was told it was a very reasonable request. But I just saw my onc yesterday & what they decided on is to let me go for a 2nd opinion & see what they think about it? Then my onc followed up with there has been a study on nine weeks & that has shown to be just as good. (I know they were doing a 9 wk study, but does ANYONE know IF they ever *actually* came to the conclusion that 9 wks was just as good?) If so...I NEVER heard that?

Plus my onc followed up with...if the 2nd opinion was all for it...I would have to sign a paper that acknowleges the risk for heart damage. (Gee...I knew that.) I told her I was interested herceptin a little longer since as I mentioned...I had no rads & 5 positive nodes. Plus knock on wood but my ECHO's have all been great since I started. My last one was 69 %.

I was hoping to avoid starting back up with a loading dose...but its too late now. So I have to wait till they get my authorization for my 2nd opinion and set up an appt. Which I will do because I have other questions that are NOT being addressed at this place. What gets me is I won't say who told me so but I know for SURE there are several women at this place that have had MORE then the yr of herceptin. A good source told me so. So it is done...not sure why I HAVE to have a 2nd opinion but no one else does? But whatever it takes. I will keep pushing forward regardless.

Chelee

04-27-2007, 01:31 PM	#1
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Response to my request to continue herceptin. As some of you know I finished my yr of herceptin but since I could NOT have radiation I had hoped to continue on herceptin & finish a 2nd yr at least another 6 months to get me through my first two yrs from DX. At first it sounded like it would be no problem. I was told it was a very reasonable request. But I just saw my onc yesterday & what they decided on is to let me go for a 2nd opinion & see what they think about it? Then my onc followed up with there has been a study on nine weeks & that has shown to be just as good. (I know they were doing a 9 wk study, but does ANYONE know IF they ever actually came to the conclusion that 9 wks was just as good?) If so...I NEVER heard that? Plus my onc followed up with...if the 2nd opinion was all for it...I would have to sign a paper that acknowleges the risk for heart damage. (Gee...I knew that.) I told her I was interested herceptin a little longer since as I mentioned...I had no rads & 5 positive nodes. Plus knock on wood but my ECHO's have all been great since I started. My last one was 69 %. I was hoping to avoid starting back up with a loading dose...but its too late now. So I have to wait till they get my authorization for my 2nd opinion and set up an appt. Which I will do because I have other questions that are NOT being addressed at this place. What gets me is I won't say who told me so but I know for SURE there are several women at this place that have had MORE then the yr of herceptin. A good source told me so. So it is done...not sure why I HAVE to have a 2nd opinion but no one else does? But whatever it takes. I will keep pushing forward regardless. 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.