Detailed Update

I had a PET Scan last Wednesday, and while the results were not what we hoped, it’s not terrible news either.  The chemo I had been on (Taxol) was not doing enough to keep the cancer from growing.  That means that there has been some growth, but it’s not a lot.  We are not back to the starting point of the first PET scan, but it’s still not really clean either.  My doctor is not overly concerned at this point.  We talked about treatment options and decided to stop the current chemo cycle (I would only have 3 cycles instead of 4).  I am going to start on a pill that should target a specific mutation in the tumor, which will hopefully be more effective.

Back in July, after being diagnosed my doctor sent samples of my liver biopsy off for genetic testing while the first round of chemo was started.  I didn’t see the results of that testing until my appointment on Thursday.  In September, I also had genetic testing done on myself to see if there were any genes that had the potential to cause cancer.  My genetic test only revealed the NF1 gene.  I mention this because while I don’t have the BRCA1 gene in my germline (in my blood/DNA) the tumor does have a BRCA1 mutation.  This means that it can be targeted with specific medications.  This also means that because the mutation is not present in my DNA its not something that I can pass down to my kids.
Along with the BRCA1 mutation, there were a few others identified, but we are not doing anything about them at this point.  As soon as insurance approves the medication (and I am not worried about a problem there) I’ll start taking it.  The other options I had were to continue the Taxol and do my 4th cycle OR have 2 cycles of the first chemo I had (AC).  The problem with AC is that it can have problematic effects on the patient’s heart (so cardiology is consulted and echocardiograms are done to monitor).  We (the doctor and I) agreed that the best course of action was to hold that in reserve for when it was really needed.  At this point, I’ll start the medication and then have a PET scan in about 8 weeks to see how effective it is.  I’m also getting an injection of something called Xgeva, which is intended to strengthen my bones (since the cancer had spread there, and can cause fractures and other issues).
Overall my doctor is very pleased with how well I am doing.  She’s astounded that I’m not having issues with fatigue, nausea, or any of the other common issues cancer patients have.  She’s also equally impressed with my white cell counts (chemo can cause significant issues with white cell counts being low).  I attribute my normal white cell counts to a supplement that a friend of mine has given me.  Its called 4Life Transfer Factor (and yes, I emailed my doctor before taking it).
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