We had a great time in Kauai and I promise pictures and the story real soon. First, a little update on me and how I am doing.
I had a lot of nausea while on carboplatin and my reward for putting up with it was nothing good. The tumor markers, as I mentioned earlier, are up over 1000 and the CAT scan from yesterday shows lots of progression, including into the liver. I was sure hoping it never got to that point but this cancer is so damned aggressive and nothing, so far, seems to slow it down.
So I am now on Gemzar (gemcitibine) - two weeks on, one week off. I had my first treatment on Wednesday and I seem to be doing ok. No nausea so far and I've been able to eat full meals. After a couple cycles, we'll be checking the tumor markers to see if there is any sign of regression. This chemo is known to be tough on blood counts, and I am already anemic so I'm sure I'll be watched closely. My oncologist doesn't like to do transfusions, and I think I agree with her.
In the meantime I have located a lab that will take my tissue from a fresh biopsy and perform 96 test assays to uncover a chemo that looks promising. If the website is correct, the cost is $510, probably not covered by insurance, but worth every penny if it comes up with the "killer chemo" that I so desperately need.
Speaking of insurance, why is it so hard for everyone to figure out that my Blue Cross Blue Shield is primary and Medicare is secondary. The rules are clear - if your employer (or in my case my hubby's employer) has more than 50 employees, then the employer's insurance is primary. I think this is going to be an ongoing battle and I am ready to ask BCBS for a nurse case manager to help us with this stuff.