HER2 Support Group Forums - View Single Post

Chelee · 10-01-2009, 09:36 PM

Hi Nancy, Yes I am talking mainly about the treatment protocol...but I would also like this 2nd opinion onc to go over my prior and recent PET/CT's. I have quite a few questions that my current onc has not addressed. My onc just said since I have recurred I can start on Herceptin, which I've already started alone. But she said I can add Navelbine, Tykerb, or Taxotere...she said my choice. She also said there are clinical trials I can look into but did not mention which ones. (Which I know of most of them from this Her2 board but would like some more input.)

Seemed like she was leaning towards Navelbine? But I have other questions since I can't have rads to chest or axilla due to lung problems...why aren't we considering going in and removing the enlarged lymph node? I've seen where other woman on this board had that done. Plus I also question that lymph node because it's been there since my baseline PET/CT. I've had them ultrasound that for the last two years and it always said 1cm enlarged lymph node probably due to post surgical changes. I wanted it biospied many times but they said they weren't worried about it. But now it did show activity on PET and it now says it's 1.8 x 1.8.

I also have questions about this increased activity in hip area...that showed up on baseline 3 yrs & 8 months ago after first cycle of TCH but they weren't worried about that either since I do have problems with scoliosis and both hips. (I have brusitis in both) How do I know for sure it's really mets? Then it says, "mild increased focus of activity within the liver. No CT correlated is identified." I have a LARGE seroma right about that spot where they say there is increased focus in liver...I'm not sure it's not all caused from the changes in the seroma? It's been there 3 yrs and 8 months also. I just don't want my onc slamming me with a bunch of chemo until I have some more concret answers to these scans. I don't know what to believe at this point & she hasn't spent any time addressing my questions or concerns. If I do have mets to hip I have no idea how bad it is? She's told me nothing other then I need to start treatment. Didn't recommend me back to my breast surgeon to check node...bone scan to make sure it's mets...nothing. So I need to see someone soon that I can trust & will clear up all these questions I have. But I didn't want to wait that long.

Chelee

10-01-2009, 09:36 PM	#4
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: 2nd opinion question? Hi Nancy, Yes I am talking mainly about the treatment protocol...but I would also like this 2nd opinion onc to go over my prior and recent PET/CT's. I have quite a few questions that my current onc has not addressed. My onc just said since I have recurred I can start on Herceptin, which I've already started alone. But she said I can add Navelbine, Tykerb, or Taxotere...she said my choice. She also said there are clinical trials I can look into but did not mention which ones. (Which I know of most of them from this Her2 board but would like some more input.) Seemed like she was leaning towards Navelbine? But I have other questions since I can't have rads to chest or axilla due to lung problems...why aren't we considering going in and removing the enlarged lymph node? I've seen where other woman on this board had that done. Plus I also question that lymph node because it's been there since my baseline PET/CT. I've had them ultrasound that for the last two years and it always said 1cm enlarged lymph node probably due to post surgical changes. I wanted it biospied many times but they said they weren't worried about it. But now it did show activity on PET and it now says it's 1.8 x 1.8. I also have questions about this increased activity in hip area...that showed up on baseline 3 yrs & 8 months ago after first cycle of TCH but they weren't worried about that either since I do have problems with scoliosis and both hips. (I have brusitis in both) How do I know for sure it's really mets? Then it says, "mild increased focus of activity within the liver. No CT correlated is identified." I have a LARGE seroma right about that spot where they say there is increased focus in liver...I'm not sure it's not all caused from the changes in the seroma? It's been there 3 yrs and 8 months also. I just don't want my onc slamming me with a bunch of chemo until I have some more concret answers to these scans. I don't know what to believe at this point & she hasn't spent any time addressing my questions or concerns. If I do have mets to hip I have no idea how bad it is? She's told me nothing other then I need to start treatment. Didn't recommend me back to my breast surgeon to check node...bone scan to make sure it's mets...nothing. So I need to see someone soon that I can trust & will clear up all these questions I have. But I didn't want to wait that long. 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.