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That is a major problem...I don't know who *could* discuss anything to serious about any of your medical problems without fear of being sued as already mentioned. I can call the "Nurse advice line" at my hospital for questions..but even then they will only tell you so much. They too have to be careful. They always refer you back to your doctor.
My insurance company just started something new a while ago which gives each patient with a serious illness their own personal nurse to talk to & stay in touch with. These are registered nurses so it actually is a nice program...I just wish they had started this a LONG time ago.
This board by far has been the most help to me. HavahJ I think the one thing you might be missing is actually talking to a real person on the phone verse's posting? I know many times I wished I could of just picked up the phone and talked to someone about my questions or problem that had the medical experience to discuss these things. But I really don't think there is anything out there like it just for legal reasons alone. I wish there were though.
Chelee
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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.
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