Hi!
I was diagnosed with CUP Aug 1 2007 and was treated with chemo. They'd found some tumors in my liver accidentally and I had no symptoms. First I was given Gemcitabine & Carboplatin with no change, and then Gemcitabine and Taxol, again with no change. I tolerated both of these programs pretty well. Lost my hair on the second one and got very fatigued, but no pain or nausea.
With no growth nor shrinkage, they then decided to wait 6 weeks and do another CT scan. Again, no change, wait 8 weeks. The CT scan at the end of Feb showed that one of the tumors grew 1cm, so this time they are giving me oral Xeloda. They chose this because with such a long time with no growth (or shrinkage!) they wondered again what the heck I had! I wondered, certainly, and pushed that they look at my liver biopsy again.
They did, and the GI pathologist said he "thinks" it might be bile duct cancer. My oncologist called and told me that, but she's been out of the country since so I don't know any more about what that might "mean". It's another very rare, very nasty cancer.
So, I've been trying to get a 2nd opinion organized with the Mayo Clinic since they are specialists in cancers like bile duct, and there is a branch here in Arizona, but so far no luck. I will lose my insurance as of April 1st, so that's going to make it very difficult to go outside for a consult. I'm not giving up, I just got my records packet mailed to me from the cancer center and we'll see where it can go - (somewhere they don't charge you $2400.00 upfront to look at it if you don't have insurance).
Given that I'm back on an expensive chemo - they told me the pills cost $2400 for two weeks - it won't take too long before I will have "spent down" enough that the state will have to put me back on Medicaid. As I mentioned in another message board, I got on SSDI (disability) and that disqualified me from medicaid insurance - too much income! :-) At least that's the current plan. My private insurance is gone, so it's my only option. Meanwhile I can keep going to the cancer center as they will not refuse treatment and will bill me and work with me.
In about a week I will meet with my oncologist again and find out if they are still considering me CUP or if I'm now bile duct cancer. Each CUP is so different. Some show, some don't and they can be in any part of the body. Congrats to those of you who have had success with your chemos!