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Re: lung mets, CT scan, and going off chemo
Hi reets
Warning, this is a long post!
You are correct, the protocol for Taxotere, H & P is for 1st line treatment.
In my post above, I actually mis-stated the sequence of events when I recurred (chemo brain I guess) Anyway, my Doc put me back on the Herceptin first, when that wasn't working fast enough, we added in the Taxotere, and when I could no longer tolerate the Taxotere, we switched to Perjeta. My Insurance (Blue Shield) denied the Perjeta because I have been heavily treated before, so I was able to get it through Genentech's patient access program. I had only been on the Perjeta and Herceptin a short time, when my husband and I decided to switch health plans. I interviewed a doctor at Kaiser Permanente, before we made the switch, and she said I would have no problem getting the Perjeta through them, if that was what was working for me.
So we made the switch to Kaiser, and I have been on the Herceptin & Perjeta ever since.
Regarding tumor markers. I know from my own past experience that PET scans don't show anything when my tumor markers are only slightly elevated. It is not until they start approaching the 100's range that anything will show up. Because I have had so many scans during the course of my disease, I have made the decision not to do any more scans then absolutely necessary. My markers have always been a reliable indicator for me, so my doctor has agreed that we will watch them and look for a steady upward trend before doing more scans. Right now they keep fluctuating from the mid to high 40's. Another interesting thing is that at my old oncology center, the reference range for normal CA15-3 was 0 to 31. At Kaiser their reference range is 0 to 39.
Before this last recurrence my markers stayed consistently in the 20's. Since I have been at Kaiser, the lowest my markers have ever been is 37. My doctor at my old oncology center also used the Her2 Serum test to monitor things, but Kaiser does not use that test. I'm thinking that if my markers do start to climb steadily upward, I may go to an outside lab to get the Her2 Serum test run. In my case, it was actually more sensitive than the CA15-3, and was the first to rise when I had my recurrence.
So there you have it, no easy answers here, as we are all so different.
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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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Hybrid Mode
