HER2 Support Group Forums - View Single Post - Tykerb, Herceptin combo instead of Navelbine?

Chelee · 10-29-2009, 03:56 PM

There isn't an orthopedic in my "group" that handles the issues with my bone mets to femur. So I am being sent back to COH to see one of their Ortho surgeons. But since it's an HMO that will take time...time I don't have. The MRI that shows mass on my femur also mentions borderline enlarged nodes within the inguinal region. That did not show on my last PET/CT on 9-21-09. Plus we know the PET/CT showed recurrence to RT axilla, femur, ilium, & possible liver. I feel I can't wait any longer. My onc is trying to delay my care it seems! My onc & COH onc both recommended Navelbine, Herceptin, & Zometa. I told them Dr. Slamon said Tykerb, Herceptin, & Zometa if I couldn't do that TDM1. Both onc said there is no chemo added...so why would he recommend that combo? They both said I had to have chemo in there or it would not work. (Hence the Navelbine.)

I am going to call my onc and tell her I want to do the Tykerb, Herceptin, Zometa that Dr. Slamon recommended. I think it makes more sense since I am so Her2 positive! I have a feeling it's all about cost when it comes to my onc. I just got off the phone from Dr. Slamon's office & talked to the NP. She agrees I need to be on something now. Plus she let me know I have to be off the Zometa a while (wash out period) to have femur repaired. (Sure nice my onc didn't brother to tell me that! I just had Zometa Tuesday!) She (NP) also said there was nothing they saw that would make them think my hip will break. So I thinking I should just get going on Tykerb & go see the Ortho up at COH when it gets approved. I've been a wreck...so much time keeps going by with no trt. Since my TM'ers dropped so quickly with just my Herceptin loading dose...I'm thinking Herceptin, Tykerb will work great for me. I would appreciate any ideas, thoughts, advice concerning this?

Chelee

10-29-2009, 03:56 PM	#1
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Tykerb, Herceptin combo instead of Navelbine? There isn't an orthopedic in my "group" that handles the issues with my bone mets to femur. So I am being sent back to COH to see one of their Ortho surgeons. But since it's an HMO that will take time...time I don't have. The MRI that shows mass on my femur also mentions borderline enlarged nodes within the inguinal region. That did not show on my last PET/CT on 9-21-09. Plus we know the PET/CT showed recurrence to RT axilla, femur, ilium, & possible liver. I feel I can't wait any longer. My onc is trying to delay my care it seems! My onc & COH onc both recommended Navelbine, Herceptin, & Zometa. I told them Dr. Slamon said Tykerb, Herceptin, & Zometa if I couldn't do that TDM1. Both onc said there is no chemo added...so why would he recommend that combo? They both said I had to have chemo in there or it would not work. (Hence the Navelbine.) I am going to call my onc and tell her I want to do the Tykerb, Herceptin, Zometa that Dr. Slamon recommended. I think it makes more sense since I am so Her2 positive! I have a feeling it's all about cost when it comes to my onc. I just got off the phone from Dr. Slamon's office & talked to the NP. She agrees I need to be on something now. Plus she let me know I have to be off the Zometa a while (wash out period) to have femur repaired. (Sure nice my onc didn't brother to tell me that! I just had Zometa Tuesday!) She (NP) also said there was nothing they saw that would make them think my hip will break. So I thinking I should just get going on Tykerb & go see the Ortho up at COH when it gets approved. I've been a wreck...so much time keeps going by with no trt. Since my TM'ers dropped so quickly with just my Herceptin loading dose...I'm thinking Herceptin, Tykerb will work great for me. I would appreciate any ideas, thoughts, advice concerning this? 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.