Shortly after Christmas I had my PET scan and blood work done. I thought it would be bad because my back had been hurting more than usual. Although my tumor markers were only slightly elevated from last time- now 114, the PET scan showed 2 new spots in my pelvis, my tail bone spots had gotten brighter and the vertebral mets were variable. Some had gotten smaller, but some had also gotten bigger. I didn't ask to look at the scan this time, I think the more I know, and the more images I have of the cancer, the more anxious I feel moving forward. Right now all I know is that the cancer mildly progressed, but I have very little pain and live a completely normal life.
Doctor thinks the Gemzar and Carboplatin was no longer effective and we need to find a better combo for me. After some discussion, we decided to try going back on oral Tykerb, and combine it with i.v. Herceptin. I was very excited but also quite nervous- I am now not on any true "chemo", now just therapies that block the Her-2 receptor signaling. I was excited because I know my tumor markers dropped within the first month after being on Tykerb (with Xeloda) last time, and Tykerb was tolerable and oh yeah- Tykerb is oral, so no i.v.s for that one. I've been on and off Herceptin for almost a year now, so its nothing new- and has no side effects. Tykerb, like I said is tolerable- but challenging. Tykerb causes terrible diarrhea, and this forced me to modify my diet (no milk products) to manage the GI issues. But like last time, once milk products were cut out, I did just fine- just gonna miss my ice cream. I also know that women can be on this therapy for a very long time (years even).
The last thing the doctor brought up was possibly biopsying a bone met to check for hormone receptor expression. My primary tumor long ago was not responsive to estrogen or progesterone, but it is possible that the mets would have mutated to being positive. This is huge! What a concept- if they have become ER+ or PR+, I would have a whole new angle in this fight. And typically women with ER or PR+ cancer do better overall, these are the ones that live decades with their cancer. Sadly, however it would mean I would go on estrogen suppression, go through menopause and never be able to bear children again. The doctor said that my bone mets are behaving differently than typical ER-/PR- cancer. He said it is far more frequent to have ER+ bone mets that stay localized to bones, whereas the ER- ones will more often jump to other organs right away. So this little observation has me pretty excited!
No plans to start tamoxifen yet, we will wait and see how the Tykerb and Herceptin goes first.
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