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Old 03-24-2013, 06:13 PM   #1
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Question for liver metsters

Over the course of my cancer, which is only in my liver, I have had seven chemos (plus various other meds - herceptin, perjeta, zometa, etc). I have had maybe 40 scans (had a liver resection so they've looked closely at me). I am been okay with all of us, few side effects, managed chemo well, etc.

Gemzar was different. I was unable to manage it and had to give up. Nausea, vomiting, discomfort, unbearable fatigue. Now that I'm off Gemzar I'm back to "normal" which is sick - but up and about, not in bed. I can do minor things and ritalin keeps me awake and while i don't cook daily I do once or twice a week.

I had a CT scan with contrast on Friday and had to go to bed right after the scan. Felt sick, nauseated, tired, unable to be awake. I'm sure I'm in the upper 20s for CT with contrast at this point, so I was surprised as I've never had a problem with it and it's never done anything to me. (I was supposed to go to my son's school play and I could not, I could not stay awake.)

I'm wondering if perhaps my liver mets is making it harder for serious meds like chemo and contrast to process out of my system? i'm not having the issue with by mouth meds, like pain meds, although I do seem to need more than normal - but the pain has increased so that's to be expected. It's the IV meds that seem to be doing it. (But I had herceptin, zometa and perjeta Wednesday and was okay)

So, has anybody had this issue before? Is it the liver becoming weaker, or perhaps kidneys or something less effective? I guess I don't understand how the liver operates so don't know if this is part of the decline.

I am hoping to start TDM1 soon. The CT is to see what is going on and why I've had such a difficult time with Gemzar and to see where I stand pre-TDM1/Kadcyla. I know it won't be a good result as the pain in my liver is now up to the shoulder and getting worse. I'm also quite tired and am up to 3 ritalin a day to stay awake.

Just curious if I'm alone in this or if somebody else has had it? I fear that this means that my time is growing shorter but who knows? I am hoping TDM1 will change things around a bit so am not giving up but would like to know if this is common. *hugs*
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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.
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