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CoolBreeze · 03-27-2013, 04:25 PM

Thank you ladies, for your wonderful posts, and so full of hope! I confess, I've felt so poorly lately that I've been thinking life is going to be very short for me. But then I hear stories like you told and I remember, I might have time yet, maybe a lot more - nobody knows. This could be just a down time and something may work and who knows, maybe by summer I'll be feeling good and taking a trip to NYC to take my son to his summer program! I sure hope so! It's harder to remember that when you feel sick.

As for the TDM1, I'm plenty squeaky, don't worry.

My doctor has assured me that I would be put on TDM1 so I imagine it's just ordering, training nurses, paperwork, and paying for it. It's an expensive drug they have to buy, and I think it's fair to not nag yet. The drug has been out and shipping less than a month. I honestly don't know how a medical office works but it's a small clinic with five doctors, not a huge hospital-based one. At this point, I have only skipped one chemo so I am not far behind. But trust me, I won't go months and months without getting the drug and if he doesn't give me a start date when I see him next week, I'll start to push a bit.

I had my CT last week and will get the results next week (my choice to wait that long) and I expect I'll have more answers about when I'll start it next week.

I see the doctor April 3rd and my birthday is April 5th. I will tell him that all I want for my birthday is TDM1.

LOL.

As for the AI issue - I failed on tamoxifen, progressed. And, I was still pre-menopausal so he didn't want to give me an AI. He said it could have the opposite reaction than we wanted and it could start my ovaries up again. I was only very weakly ER+ anyway. But I will ask him again, as I have aged since we have had that conversation.

And, I would like the protection of tykerb for my brain if my colon can handle it. I'll ask him too.

Thank you all for reminding me that not everybody with liver mets kicks off within a couple years. Some of us hang out a few more years, and yes, I want to see my son get his degree from not only high school, but then college and then grad school. Knowing him, it'll be a PhD.

He is very focused and has the ability to work towards something and get there, unlike his mother, who is very ADD and just.....

.....what was I rambling about?

*hugs* to all you

03-27-2013, 04:25 PM	#12
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Question for liver metsters Thank you ladies, for your wonderful posts, and so full of hope! I confess, I've felt so poorly lately that I've been thinking life is going to be very short for me. But then I hear stories like you told and I remember, I might have time yet, maybe a lot more - nobody knows. This could be just a down time and something may work and who knows, maybe by summer I'll be feeling good and taking a trip to NYC to take my son to his summer program! I sure hope so! It's harder to remember that when you feel sick. As for the TDM1, I'm plenty squeaky, don't worry. My doctor has assured me that I would be put on TDM1 so I imagine it's just ordering, training nurses, paperwork, and paying for it. It's an expensive drug they have to buy, and I think it's fair to not nag yet. The drug has been out and shipping less than a month. I honestly don't know how a medical office works but it's a small clinic with five doctors, not a huge hospital-based one. At this point, I have only skipped one chemo so I am not far behind. But trust me, I won't go months and months without getting the drug and if he doesn't give me a start date when I see him next week, I'll start to push a bit. I had my CT last week and will get the results next week (my choice to wait that long) and I expect I'll have more answers about when I'll start it next week. I see the doctor April 3rd and my birthday is April 5th. I will tell him that all I want for my birthday is TDM1. LOL. As for the AI issue - I failed on tamoxifen, progressed. And, I was still pre-menopausal so he didn't want to give me an AI. He said it could have the opposite reaction than we wanted and it could start my ovaries up again. I was only very weakly ER+ anyway. But I will ask him again, as I have aged since we have had that conversation. And, I would like the protection of tykerb for my brain if my colon can handle it. I'll ask him too. Thank you all for reminding me that not everybody with liver mets kicks off within a couple years. Some of us hang out a few more years, and yes, I want to see my son get his degree from not only high school, but then college and then grad school. Knowing him, it'll be a PhD. He is very focused and has the ability to work towards something and get there, unlike his mother, who is very ADD and just..... .....what was I rambling about? hugs to all you __________________ 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.