HER2 Support Group Forums - View Single Post - CHELEE

Chelee · 05-13-2010, 12:43 AM

Hi Steph, I've wanted to check in here more often but since my recurrence it's kept me so busy. I have had so many appts it's unreal. My leg healed up nicely and I have rads to femur behind me...so that's good. I do have minor pain in hip since the rads...but no walker or cane so all is not too bad.

The main thing that slowed me down was some issues with my lungs. I think the Navelbine was the cause--was on oxygen for a while and I'm just now feeling much better since I've been off the Navy Beans. Just had my ECHO and EF was between 65% to 70% so I was happy to hear that.

I did see Dr. Slamon on the 4th of this month & I'm so glad I did. I've always wondered why my Ortho onc and regular onc didn't want to run a FISH on my biopsy from my femur? They both said it was not necessary...that it was the same cancer as my primary. But the first thing Dr. Slamon wanted was a FISH test ran on my femur bisopy. Dr. Slamon said we can't go any further until we have the results of that FISH. He instructed me to get my tumor block...not slides and take them to USC Path Dept to Dr. Press. That was a job in it's self...City of Hope didn't want to release my tumor block. They said their policy is only slides. (So after 3 days of phone calls...I finally got them to release my block to me.) So just alot of appts and running around to do.

So now I'm just waiting on results of FISH and then back out to see Dr. Slamon. He did bring up TDM-1 again for me...and that has always been my main focus. The doctors I've seen haven't made me feel very hopeful...but one visit to Dr. Slamon and I feel so much better. The other onc's I've seen just go thru the motions...but Dr. Slamon goes the distance...he is the "man".

Chelee

05-13-2010, 12:43 AM	#3
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: CHELEE - How are you these days? Hi Steph, I've wanted to check in here more often but since my recurrence it's kept me so busy. I have had so many appts it's unreal. My leg healed up nicely and I have rads to femur behind me...so that's good. I do have minor pain in hip since the rads...but no walker or cane so all is not too bad. The main thing that slowed me down was some issues with my lungs. I think the Navelbine was the cause--was on oxygen for a while and I'm just now feeling much better since I've been off the Navy Beans. Just had my ECHO and EF was between 65% to 70% so I was happy to hear that. I did see Dr. Slamon on the 4th of this month & I'm so glad I did. I've always wondered why my Ortho onc and regular onc didn't want to run a FISH on my biopsy from my femur? They both said it was not necessary...that it was the same cancer as my primary. But the first thing Dr. Slamon wanted was a FISH test ran on my femur bisopy. Dr. Slamon said we can't go any further until we have the results of that FISH. He instructed me to get my tumor block...not slides and take them to USC Path Dept to Dr. Press. That was a job in it's self...City of Hope didn't want to release my tumor block. They said their policy is only slides. (So after 3 days of phone calls...I finally got them to release my block to me.) So just alot of appts and running around to do. So now I'm just waiting on results of FISH and then back out to see Dr. Slamon. He did bring up TDM-1 again for me...and that has always been my main focus. The doctors I've seen haven't made me feel very hopeful...but one visit to Dr. Slamon and I feel so much better. The other onc's I've seen just go thru the motions...but Dr. Slamon goes the distance...he is the "man". 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.