Checking In: Bad News (Hello Kadcyla) and Good New!
Hello Her2 Fam,
It's been a while since I posted, but thought I would post an update. After nearly 3 years maintaining on Herceptin and Perjeta, I had a PET scan in Dec. that showed a mass in the peri rectal area of my abdomen. After more scans and two biopsies, it was determined to be metastasized breast cancer, not colon or ovarian, whew! The tumor was still Her2 positive, but is no longer ER+.
So, out with the Herceptin, Perjeta, and Femara, and in with Kadcyla! After almost 15 years on Femara, can't say I'm sad to see it go, but devastated that the H/P combo stopped working for me, at least that's what my onc believes.
I don't know if I believe that Herceptin has stopped working though, but more that it just needs a little help, which leads me to the good news part of this update. After 4 infusions of Kadcyla, the tumor is almost gone.
If Herceptin had stopped working for me, then it would seem that Kadcyla would not be effective. So.... when I can no longer tolerate the Kadcyla, or it stops working I would hope I could go back on Herceptin, in combo with something else. My doctor says no, but I guess I'll cross that bridge when I get there.
The other good news in this update is that the Kadcyla has been pretty easy for me to tolerate, so far. Just a lot of fatigue for a few days after my infusion. My main concern is the neuropathy getting worse that I already had from good ol' taxotere. I am now taking a very small dose of gabapentin (Neurontin) at bedtime and it does seem to help with the pain, but doesn't do much for the numbness. It sure can make doing simple things challenging! Anyway, just had my 6th infusion today, and will be getting another scan in June to see how things are looking.
The best news of all is that I went on my first horse riding/ camping trip last week, since I started on Kadcyla, and it was such good therapy! I was so worried I might have to give up my trail riding, while on Kadcyla, but so far so good!
Take that, metastatic breast cancer!
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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