View Single Post
Old 04-07-2013, 02:26 PM   #36
CoolBreeze
Senior Member
 
CoolBreeze's Avatar
 
Join Date: Dec 2009
Posts: 562
Re: Question for liver metsters

KsGal, I started Gemzar January 15th, I think. With this chemo, a round is 3 on, one off.

I think I was only able to make it through the first round before I had to skip one. Not only did it destroy my white and red blood counts but it made me physically sick: nausea, exhaustion, pain, just completely unable to get out of bed. And, I never made it through a round without skipping one.

After about two rounds, my doctor lowered my dose. (Normal dose is 1000 ml, and he lowered it to 800 ml). Even then, I couldn't make it through the next round, and then in March we gave it up. I honestly was surprised that I wasn't turning yellow yet - I thought my liver was giving up, I sleeping so much, having bathroom problems, just zero energy to the point where my husband was thinking I needed to go to the ER. Also, lots of pain in my right side, liver, under the shoulder. I thought I was declining fast, but it was the gemzar.

We decided to go on TDM1, but have a baseline scan first, and then the scan showed the 50% reduction in tumor size. Wow. First regression I've had and I had half my liver cut out!

So, by my choice, I said I'd try and tough it out and go back on Gemzar. He said this time at 500 ml and if I can't tolerate it, we still have TDM1. We'll see if I can manage with that. I better refill all my anti-nausea pills and arrange for somebody to get my child from school on Thursdays since I won't be getting out of bed.

It's been nice not feeling horrible, you know? Since I stopped the Gemzar, I haven't felt well, but I have felt better. You forget when you take this forever chemo journey what is is like to not be on it. And of course, when you are not on it you are still sick so I'll never feel healthy again......but I do feel better. It's been about a month since I've had any and I wake up at 11:00 now (instead of 1:30 with alarm) and I can do a couple things around the house, including cook dinner. I was too shaky to stand before.

I can't eat anything much yet though. I used to not eat a lot but want a big piece of cake every day which kept my calories up (and my doctor said any calories count) and sit with my family and eat something - and that craving is gone so I'm not really eating, and even with my family I just pick. Except a coconut popsicle at night, I still eat one of those, which is a weird craving but I love them. I have been stable at 99 pounds for a couple of weeks, so as long as i don't go down it's good. I also don't expend a lot of energy.

Liver disease just causes problems everywhere. I am curious - does lung do that too? If I had lung mets, would I have the weakness, the gastro problems, the eating problems, the energy problems? It's a legit question, I'm curious. Brain is a different animal so I don't want to include that but am curious about other organ. Maybe all these are just late stage cancer problems and we all get them? Maybe it's chemo although my month off hasn't led me to believe it entirely - some is cancer, some is chemo. Maybe if I could get six months off I'd feel different.

Oh well, at least I have a few things in the arsenal yet, not complaining. Funny how we can live this way. If you had dropped healthy Ann from four years ago into the body I occupy now, I think she would be shocked and scream to get out, but it's just me now.
__________________
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.
CoolBreeze is offline   Reply With Quote