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Chelee · 12-30-2007, 12:20 AM

I just took that survey. They said it will take about 30 minutes. It took a one hour and 36 minutes of my time....that's a bit too much and I let them know that. I don't mind helping when I can...but that went on far to long.

Sheila, I wonder if its exactly the same for each person because it did ask me about Herceptin & Tykerb towards the very end of the survey. But the first part of it went on and on about how involved was I in the treatment decisions? Was I informed about all the side affects and made aware of each drug I would be taking, etc. Do I feel going for my cancer treatments interfered with my every day life? Did having cancer keep me from doing things that I would of gotten to do had I never been DX with it. How many times were my treatments changed and how involved was I in those decisions? Do I trust what my oncologists advice on what medications to take? Do I follow through on medications I'm given or does the quality of life issue make me quit taking the medications I'm prescribed? Where do I find MOST of my information on HER2 cancer which gave me box after box to check. Each question would have a "Check all that apply" type of deal. Where do I find support...then again, "Check all that apply". How many opinions did I get when DX? How many oncologist have I've seen since I was DX? I could go on for days! lol

The questions were endless! I didn't think it was ever going to end...just ridiculous! I've taken alot of surveys online over the last 15 years...but this one was extremly LONG!!! It wasn't till the very end it asked about Herceptin and Tykerb. If your reading this Bonnie...you just saved yourself a GOOD hour plus of free time.

Chelee

12-30-2007, 12:20 AM	#7
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	I just took that survey. They said it will take about 30 minutes. It took a one hour and 36 minutes of my time....that's a bit too much and I let them know that. I don't mind helping when I can...but that went on far to long. Sheila, I wonder if its exactly the same for each person because it did ask me about Herceptin & Tykerb towards the very end of the survey. But the first part of it went on and on about how involved was I in the treatment decisions? Was I informed about all the side affects and made aware of each drug I would be taking, etc. Do I feel going for my cancer treatments interfered with my every day life? Did having cancer keep me from doing things that I would of gotten to do had I never been DX with it. How many times were my treatments changed and how involved was I in those decisions? Do I trust what my oncologists advice on what medications to take? Do I follow through on medications I'm given or does the quality of life issue make me quit taking the medications I'm prescribed? Where do I find MOST of my information on HER2 cancer which gave me box after box to check. Each question would have a "Check all that apply" type of deal. Where do I find support...then again, "Check all that apply". How many opinions did I get when DX? How many oncologist have I've seen since I was DX? I could go on for days! lol The questions were endless! I didn't think it was ever going to end...just ridiculous! I've taken alot of surveys online over the last 15 years...but this one was extremly LONG!!! It wasn't till the very end it asked about Herceptin and Tykerb. If your reading this Bonnie...you just saved yourself a GOOD hour plus of free time. 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.