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Chelee · 11-11-2009, 07:25 PM

Shelia, your experience with the "CLRC" (Cancer Legal Resource Center) was the same for me. They say it will be a few days & someone will contact you. But by the time they called me back over a months time or more I forgot why I called them. lol They are really slow & they never could help me with any of my problems?

Today they set-up my 3 appts for me all on Monday. Pulmonary doctor...then bone scan. Which I have to have an injection...go home and come back later for the scan. Then Herceptin later that day. Monday will be busy. Still working on EKG and chest x-rays...no labs mentioned yet either? I still want my tumor markers ran...I want to see if Herceptin is still working at all? Plus I feel like I have activity going on in sterum area now too. Also feels like a enlarged node in right side clavical area. (Now I'm really getting worried.) I called Dr. Slamon's office today but they were out...I'll try again tomorrow. I want to ask about having this surgery with Tykerb? I'm trying to remain calm but this is alot of down time for my cancer to spread.

Elaine I found every website I could to rate my doctor about a yr ago...it's the least I could do for her. lol The "drscore.com" was a new one to me...so thanks for adding that one.

Steph I agree about the TM'ers. Since I do get my herceptin Monday I am going to request they be done. If they absolutely refuse again...I will pay for them myself...then fight with my insurance company later. I need to know what they are now before adding anything...and also because of this NEW node I think I feel coming up in clavical area. I want to know if my cancer is on the move. I'm getting very concerned. Sterum area hurts and burns too...that's also new.

Chelee

11-11-2009, 07:25 PM	#17
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Who do I call, what do I do?!!! Shelia, your experience with the "CLRC" (Cancer Legal Resource Center) was the same for me. They say it will be a few days & someone will contact you. But by the time they called me back over a months time or more I forgot why I called them. lol They are really slow & they never could help me with any of my problems? Today they set-up my 3 appts for me all on Monday. Pulmonary doctor...then bone scan. Which I have to have an injection...go home and come back later for the scan. Then Herceptin later that day. Monday will be busy. Still working on EKG and chest x-rays...no labs mentioned yet either? I still want my tumor markers ran...I want to see if Herceptin is still working at all? Plus I feel like I have activity going on in sterum area now too. Also feels like a enlarged node in right side clavical area. (Now I'm really getting worried.) I called Dr. Slamon's office today but they were out...I'll try again tomorrow. I want to ask about having this surgery with Tykerb? I'm trying to remain calm but this is alot of down time for my cancer to spread. Elaine I found every website I could to rate my doctor about a yr ago...it's the least I could do for her. lol The "drscore.com" was a new one to me...so thanks for adding that one. Steph I agree about the TM'ers. Since I do get my herceptin Monday I am going to request they be done. If they absolutely refuse again...I will pay for them myself...then fight with my insurance company later. I need to know what they are now before adding anything...and also because of this NEW node I think I feel coming up in clavical area. I want to know if my cancer is on the move. I'm getting very concerned. Sterum area hurts and burns too...that's also new. 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.