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CoolBreeze · 01-01-2013, 07:37 PM

Thank you ladies, for both the information and kind words.

My regular oncologist broke his pelvis before Christmas, poor guy. So, I am seeing another in his group, who agreed TDM1 would be fine for me. I have started having liver pain so I expect this halaven is not working.

I have not been on tykerb. I had a very serious case of c-diff, and almost died. My entire colon was infected, and I had pancolitis. My colon was not in good shape for a long time and tykerb is hard on the colon. I think I'm healed from that now though so can explore that option.

I asked because I agree, they probably won't kick folks out of the trial. I told the doctor that I didn't want to get caught in an in-between place, say the trials are closed but approval hasn't happened and offices/insurance haven't sorted it out yet. It would be hard to be panting for it and have it dangling just out of reach.

On the other hand, there is no trial location in my town and it would mean an hour and a half drive each time. I can manage it now but who knows for how long?

It is time for me to get this NED or Regression or even Stability I keep hearing about. All I ever seem to be granted is progression. But, so far, it has stayed in my liver. Too bad we need livers to survive, huh? Yanking half of mine out was not enough, I need it all gone apparently.

Chrisy, I have another "goals" meme I was going to post. It is a checklist that says, "Bucket List: Ice. Beer."

I'm not a drinker anymore but still thought it amusing.

Maybe your group would get a laugh out of that too.

01-01-2013, 07:37 PM	#5
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Question about TDM1 I don't understand Thank you ladies, for both the information and kind words. My regular oncologist broke his pelvis before Christmas, poor guy. So, I am seeing another in his group, who agreed TDM1 would be fine for me. I have started having liver pain so I expect this halaven is not working. I have not been on tykerb. I had a very serious case of c-diff, and almost died. My entire colon was infected, and I had pancolitis. My colon was not in good shape for a long time and tykerb is hard on the colon. I think I'm healed from that now though so can explore that option. I asked because I agree, they probably won't kick folks out of the trial. I told the doctor that I didn't want to get caught in an in-between place, say the trials are closed but approval hasn't happened and offices/insurance haven't sorted it out yet. It would be hard to be panting for it and have it dangling just out of reach. On the other hand, there is no trial location in my town and it would mean an hour and a half drive each time. I can manage it now but who knows for how long? It is time for me to get this NED or Regression or even Stability I keep hearing about. All I ever seem to be granted is progression. But, so far, it has stayed in my liver. Too bad we need livers to survive, huh? Yanking half of mine out was not enough, I need it all gone apparently. Chrisy, I have another "goals" meme I was going to post. It is a checklist that says, "Bucket List: Ice. Beer." I'm not a drinker anymore but still thought it amusing. Maybe your group would get a laugh out of that too. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.