Feb 15, 2011 - 9:30 pm
Hi everyone, I have not updated in a while, so thought I would check in. I started dense dose taxol and carbo in September after flunking doxil, and then taking the summer off. My CA125 immediately dived to 22 after a couple months, but neuropathy, a cardio issue, and fatigue drove me to plead for a break over Christmas. My doctor gladly granted that. It was wonderful memory making holiday with my son back from college for the first time after leaving.
When I went back on chemo in Janurary the CA was up to 60. I was not surprised. Then after being on it another month, it went up to 80. I was a bit surprised. I will be continuing my 6 month regime through the end of March (maybe April?) providing I don't have any more cardio or other issues. My neuropathy is getting worse in my feet, and although I have never had it my hands, I am beginning to get side effects there too. I can still walk but am very clumsy. I just want to sit in my chair all day with my feet up, it is so much work to move now. The very cold weather doesn't help that either.
The only chemo I have left to use is topotecan. I don't know much about it, and have never read about anyone getting very good results on it, but probably will go that route after a short break. When I did a chemo essay a few years ago, topo did NOT score well. Avastin did, however, and I really wish/hope/pray I could get that. It has not been approved in Japan for ovca and insurance doesn't cover. If I pay ut of pocket for it, it would be $5000/month. OUCH!
I am not depressed, but a bit discouraged, and weary of the fight. In June it will be 4 years since dx. I did have an 8 month remission after initial treatment (compltete cycto-reductive surgery and carbo/taxol for 8 cycles). I have been on chemo (gem/cis, doxil and now dense dose taxol/carbo) off and on ever since, and although I have tolerated it pretty well (never any blood boosters) and am able to plow forward even after being knocked off my feet for a few days, it is getting OLD.
Meanwhile, I am headed to the States to check in with one of my second opinion docs in Seattle (I am not holding out for any big huge miraculous solution from him, but Hey!!! you never know.) I will be asking about trials (I don't qualify here in Japan for them) and Avastin for sure. I don't have insurace in the US, so it complicates all of my issues for getting treatment there. All my surgeries have been in the US, and I payed cash for them.
The positive news is that I am going to surprise my mom and dad for their 79th birthdays (they have no idea i am going, and fortunately don't have a computer so don't read cancer boards or do FB:) hang out with my son, see friends (I will hopefully meet up with Britany Ching from this board too) and enjoy life!!!
Thanks for letting me share.
Hugs all around,