Hi, I'm new here, so I'll try to condense my story as much as I possibly can. I desperately want to hear from other OVCA patients about their experiences with tumors which metastasized from their inirial locations.
I was diagnosed with large fibroids in 2000, which, upon surgery, turned out to be cancer in both ovaries. The surgeon removed everything and said that I had stage 2(a) and that hopefully, they had gotten everything, but just to be sure, they put me on four rounds of - I think it was Cisplatin which eventually brought my CA-125 level from 99 to 8. Since anything under 35 is considered "normal," I truly believed I was in remission. Bottom line - I was mistaken. It kept coming back at closer and closer intervals. Taxol worked well, but left me bald and very sick. I missed a lot of treatments due to low blood counts.
Carboplatin was far easier to tolerate and didn't take my hair out. But then suddenly, it stopped working. My CA-125 more than doubled and the pain on my left side is almost unbearable. I use the 100 mg Duragesic patch, plus morphine sulfate. but it still feels like there's a knife grinding away inside my body.
I've seen three well-known surgeons who all have said that the tumor is too large to remove. There is a protrusion almost the size of a ping-pong ball between my breasts with many smaller tumors surrounding it. The CT scan shows it as rubbing against my heart on the left side and way over to my kidney on the other side. I don't care about the inside - I just want to end the pain..
I've been told I have six months to live with out chemo and perhaps a year with one of the "salvage" drugs like Gemzar or Doxil, which my doctor isn't even sure I could take because my blood counts tend to go too low too fast.
I am very anxious to hear similar stories/suggestions from others who have been through this.
Thanks so much for listening,
Fran
Any information or