HER2 Support Group Forums - View Single Post - Bad scan--progression to lymph nodes

Vicki revised · 08-24-2012, 06:26 PM

Thanks all. I've recovered from my anxiety. Yes, I plan to pursue TDM1 availability. From what I can tell the nearest trial site is 4 hrs away. Unfortunatly, Alabama doesn't require insurance companies to cover any trial expenses so that's another hurdle to work on. I've followed Mike F's efforts to have it administered for his wife at their local hospital and I would also be the first (at this time) patient on TDM1 at my clinic.

My onc kept reassuring me there are "lots of" med combos to try and she really wants me to try Tykerb/Xelodia for 3 months before trying TDM1. She has a lot of confidence in Tykerb. I was on tykerb and Herceptin for 3 months in the spring when my mets reoccurred and had progression on that combo then went on Abraxane & Herceptin. Looking at my timeline I'm suspicious Herceptin stopped working 6 months ago so maybe Tykerb didnt really get a chance.

We are taking a short (much needed) vacation this week but she said "I don't want to do nothing for a week" so starting Tykerb tomorrow and then Xelodia labor day when we return. She didn't want me to start xeloda before we leave and have side effect issues while gone.

Her urgency added to my anxiety about losing Herceptin. I have never and will not ask the dreaded question b/c I don't want to concede anything.

08-24-2012, 06:26 PM	#7
Vicki revised Senior Member Join Date: Mar 2012 Location: Alabama Posts: 121	Re: Bad scan--progression to lymph nodes Thanks all. I've recovered from my anxiety. Yes, I plan to pursue TDM1 availability. From what I can tell the nearest trial site is 4 hrs away. Unfortunatly, Alabama doesn't require insurance companies to cover any trial expenses so that's another hurdle to work on. I've followed Mike F's efforts to have it administered for his wife at their local hospital and I would also be the first (at this time) patient on TDM1 at my clinic. My onc kept reassuring me there are "lots of" med combos to try and she really wants me to try Tykerb/Xelodia for 3 months before trying TDM1. She has a lot of confidence in Tykerb. I was on tykerb and Herceptin for 3 months in the spring when my mets reoccurred and had progression on that combo then went on Abraxane & Herceptin. Looking at my timeline I'm suspicious Herceptin stopped working 6 months ago so maybe Tykerb didnt really get a chance. We are taking a short (much needed) vacation this week but she said "I don't want to do nothing for a week" so starting Tykerb tomorrow and then Xelodia labor day when we return. She didn't want me to start xeloda before we leave and have side effect issues while gone. Her urgency added to my anxiety about losing Herceptin. I have never and will not ask the dreaded question b/c I don't want to concede anything. __________________ Vicki Lord, give me the comfort of Your embrace and acceptance of Your will. 3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx. 7/11: Nothing left except Primary breast tumor now 1.5cm. 8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED! 10/11: NED! Continue Herceptin indef. 2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin. 5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly. 8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda. 10/12: Severe side effects. 3 weeks break from everything. 12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.