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Old 02-18-2014, 07:01 PM   #17
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: H0-ho-hope someone has some PERJETA feedback...

Oh weird to see an old thread like this! Looks like I've been on perjeta for a year now. It was definitely the Gemzar causing my nausea. I've never had any bowel issues. The only thing Perjeta has done for me is made me completely stable! No new cancer, no growth and I've been off chemo and only on perjeta for six months.

I LOVE PERJETA!!!!!!

I think if your mother is having pure liquid diarrhea it is imperative she go in for a stool test. (She can do it at home but she should see her doctor) She may have something more insidious, like c-diff, which can be deadly. That doesn't sound like a normal side effect of perjeta to me, having liquid diarrhea. I wouldn't wait, if she has an infectious disease like c-diff, the longer she goes without treatment, the more dangerous it could be. I went septic from it.

Has she been on antibiotics or been in the hospital recently? That would give a clue that the possibility that c-diff is a real one. If she does take immodium, it could make it much worse as the toxins won't clear her GI tract. Not to scare you but I was sicker from c-diff than I ever have been from cancer and as you can see, I have had a lot of treatment. C Diff was the worst thing I"ve ever experienced and that's saying something.

Good luck to your mom. I hope you get it figured out soon. Definitely call a doctor.
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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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