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Can't do Gemzar...sigh...the only one that ever works
I think my last post was a good one - gemzar shrunk my liver tumor by 50% so we decided to put off the TDM1 and stick with Gemzar. I was happy!
However, I've not been able to do Gemzar in weeks as my grans are steady at 1.3. They won't come up. My reds are about 9.9 and are coming up (they were 9.0 a week ago) but the whites are stuck.
They cancelled all my chemo appointments until I see the doctor. Now I'm sad. 
I see my doctor tomorrow. I dont' think he can switch me to TDM1 with my blood this low.
I have a horrible reaction to leukine/neupgen/neulasta. I become almost hallucinogenic and the pain is intense, worse than having a baby. In fact, it feels like I labor through my spine. I decided if I'm dying anyway I wasn't going to put myself through that so have told the nurses and doctor that I refuse the colony stimulators.
I take dilaudid, oxy and norco so it's not like I can't take a pain-killer but they don't work for that kind of pain. If morphine or something is more powerful then maybe I'd be willing to try it one more time but what if it's not? Does anybody know - somebody who is NOT opiate-naive? I take a lot of drugs.
In the meantime, I am going downhill. Pain increased, (although manageable) and I'm so tired. It's hard to describe how tired I am. I sleep until noon or 1:00 and need a nap about 4:00 to 7:00 (my son is coming over so I've overloaded the ritalin to stay awake) and then go to bed again about midnight.
I guess this is the beginning of dying? I don't know. I've had mets for 2 years so am about the average for survival. I've heard about people getting better (temporarily). But since I haven't chemo in weeks, I figure this is cancer SEs and not chemo, even though the cancer shrunk. And, it's only in the liver and only one or two spots, but it is against the portal vein. I know people have more cancer than me so why do I feel so bad?
Long shot, but anybody experienced this? Have you had this kind of fatigue/exhaustion? Pain with neupogen? Whites that won't come up on their own? This is worse than when my reds were 8.0 and I had a transfusion. I wouldn't get out of bed at all if I didn't have children.
I guess I'm feeling a bit depressed. I have been upbeat and accepting of my death and all that mentally, but it is hard when it becomes very physical.
Ideas or thoughts? What I've already done is in my sig file and I'd prefer to only hear from Stage IV woman. There is a difference between doing 100 chemo treatments and 6, sorry but it's true so I am looking for people who have been in my place.
We'll see what the onc says but right now, I have no questions and I have nothing to suggest or come up with.
(Respect you all but am not into alternative therapies)
*hugs*
__________________
 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.
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