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Chelee · 02-14-2010, 06:38 PM

Skip,
It's hard enough being dx with Her2 breast cancer...but being told your stage IV from the get go is so scary. I couldn't even think straight when I was first told...the places your mind go too. Your entire world is turned upside down overnight. There is just no way to explain it unless you have had to walk in those shoes. The wide range of emotions that consume you. Unfortunetly I can remember exactly how I was feeling...and it wasn't pretty. From crying to total meltdown at times. Nothing anyone said to me helped at first. I don't think I felt better until I started treatment--I was finally fighting the beast.

Be careful of the phone support. I tried 3 different organizations & it didn't work out for me. Biggest problem was they all promised to match me up with someone with my "same" dx. Wks would go by and they could never find anyone for me. (I was stage III, Her2 at that time) Well my fear was that, "there weren't any women for me because they all passed away." That is where my mind went & only validated my fears that I would not make it. (Even though I know better then that now.) So make "those" kind of calls for your wife and screen then carefully! This Her2 support board has helped me more then anything else.

I did want to mentioned there are several stage IV women here that have had mets to liver and are doing great! One of them is named Kim...user name is "mamacze". She had mets to lungs and liver in 2004 and is still "NED" (No evidence of disease!) Another is Colleen and she is 4.5 yrs out and doing well. Your wife is so blessed to have you by her side helping her thru this. Support is so important. Lets us know of any way we can help

Chelee

02-14-2010, 06:38 PM	#8
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: I'm trying to think positive Skip, It's hard enough being dx with Her2 breast cancer...but being told your stage IV from the get go is so scary. I couldn't even think straight when I was first told...the places your mind go too. Your entire world is turned upside down overnight. There is just no way to explain it unless you have had to walk in those shoes. The wide range of emotions that consume you. Unfortunetly I can remember exactly how I was feeling...and it wasn't pretty. From crying to total meltdown at times. Nothing anyone said to me helped at first. I don't think I felt better until I started treatment--I was finally fighting the beast. Be careful of the phone support. I tried 3 different organizations & it didn't work out for me. Biggest problem was they all promised to match me up with someone with my "same" dx. Wks would go by and they could never find anyone for me. (I was stage III, Her2 at that time) Well my fear was that, "there weren't any women for me because they all passed away." That is where my mind went & only validated my fears that I would not make it. (Even though I know better then that now.) So make "those" kind of calls for your wife and screen then carefully! This Her2 support board has helped me more then anything else. I did want to mentioned there are several stage IV women here that have had mets to liver and are doing great! One of them is named Kim...user name is "mamacze". She had mets to lungs and liver in 2004 and is still "NED" (No evidence of disease!) Another is Colleen and she is 4.5 yrs out and doing well. Your wife is so blessed to have you by her side helping her thru this. Support is so important. Lets us know of any way we can help 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.