HER2 Support Group Forums - View Single Post - New developments might change everything?

Chelee · 11-14-2009, 11:47 PM

Jacqueline, I already sent you a PM...but I did tell the "case manager" at the hospital Friday that from now on I want everything in writing from my onc and her. (Case Manager) I will also be putting everything in writing so that they can't say they weren't aware of the problems I've been having which they are causing me intentionally. (No one would even believe what they have done to me just in the last two weeks...I wouldn't believe it if I hadn't lived it myself!)

I just wrote a bunch of stuff but I deleted it. There is nothing anyone can do so it's useless for me to go on about it. But thanks for the suggestion as its a good one. I've documented everything here at home...but now I will follow up everything by certified letters and FAXES.

Thanks so much to all of you...I really appreciate your support...I'm just feeling so helpless. I don't know how my onc or any of these people sleep at night.

Chelee

11-14-2009, 11:47 PM	#12
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: New developments might change everything? Jacqueline, I already sent you a PM...but I did tell the "case manager" at the hospital Friday that from now on I want everything in writing from my onc and her. (Case Manager) I will also be putting everything in writing so that they can't say they weren't aware of the problems I've been having which they are causing me intentionally. (No one would even believe what they have done to me just in the last two weeks...I wouldn't believe it if I hadn't lived it myself!) I just wrote a bunch of stuff but I deleted it. There is nothing anyone can do so it's useless for me to go on about it. But thanks for the suggestion as its a good one. I've documented everything here at home...but now I will follow up everything by certified letters and FAXES. Thanks so much to all of you...I really appreciate your support...I'm just feeling so helpless. I don't know how my onc or any of these people sleep at night. 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.