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Apr 25, 2018 09:58PM
Apr 25, 2018 10:12PM
First, thank you all for your kind responses. It's been six weeks since my progression scan results. They've been tough weeks for me and my husband, and probably for family and friends as well. It's scary being off treatment when you know you have an aggressive cancer.
I have been accepted into the DS-8201a Phase II trial. I'm excited to be in the trial, because the drug has been pretty successful for people with my treatment history and pathology. I probably won't get my first infusion until May 15th, 9 weeks from when I stopped Xeloda and Tykerb and almost 7 months since my last progression-free scan. I'm hoping the fact that I'm not dead yet means the cancer is somewhat less aggressive at this point than they thought it might be.
Next week, I go for all my baseline scans. I'm not nervous about the process, but I am steeling myself for unpleasant results. We will be using CT scans rather than PET scans, so I know the measurement variables will be entirely different and more precise for my mets in lungs, liver, and lymph nodes. Nine weeks off treatment almost certainly means progression. I'm going to have another brain scan, which has me a little nervous. My last one was in May 2017 and showed no mets, but that was before the mets were detected elsewhere.
I'm still pretty much symptom-free. I notice various physical changes, but can easily attribute them to things other than cancer. I'm tired and sleeping more than I usually do, and I seem to have a cold that won't quit. Cold medicine helps the cough and rough breathing, so I figure either Vicks has a cure for cancer that they haven't recognized yet or it really is just a cold and not dramatic progression in my lungs.
At this point I am focused on finishing out the semester (I'm a college prof) and getting ready for treatment. The trial site is an 8-hour drive from home, and I'll have to be there for three or four days out of each of the first 5 to 6 weeks. After that, treatment is just every third week. I've tried to get my work colleaguesprepared for me being on a wacky schedule or unavailable in the fall semester, but it's hard to know what to say to them. I look and seem healthy. They know about my diagnosis, prognosis, and treatment plan and have been very supportive so far, but I hate to leave them in a lurch. On the other hand, I may be feeling great by September and be able to work almost full-time. The uncertainty is frustrating, so I find myself focusing more on today.
Again, thanks for the support here. I post rarely, because my case is unusual in that I am in the small group of nonresponders to HER2 directed therapies, so I don't know that my experience is very helpful for others. I read every day, and you all help motivate me to get out there and live my life, whatever that means for that day.
10/2016, IDC, Left, Stage IIA, Grade 3, ER-/PR-, HER2+
11/1/2016 Perjeta (pertuzumab)
11/2/2016 Herceptin (trastuzumab)
2/1/2017 Carboplatin (Paraplatin), Taxotere (docetaxel)
7/24/2017 Mastectomy: Left
8/10/2017, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2+
Kadcyla (T-DM1, ado-trastuzumab)