Topotecan - need some help!

[Lil AJ]

My mom is going on Topotecan for a third reoccurrence in 2 years (stage IIIc).  If anyone out there has been on this drug, could you let me know some of the side effects that you experienced and how you dealt with them?  I realize that everyone responds differently but I'm hoping a little insight from others with some personal experience might help us prepare.  She has impaired kidney function from a prior clinical trial but is not in kidney failure.  I would love to hear some success stories as well, we're in need of a little hope here.  I would greatly appreciate any responses, thanks.

[Jatoo]

Dear Lil:

On her first or second recurrence what was she treated? I am asking because my wife recurred after only three(3) months. She's presently on Doxil. Thanks.

[Lil AJ]

Mom had carboplatin/taxol for the first round, reoccurrance after 6 months, 10 months of a clinical trial with Cisplastin/Flavopiridol (nasty stuff, kidney damage), 6 WEEKS "remission".  Now tumors are showing up on CT in her liver and pancreas and CA-125 is 605.

[Careylyn]

After 4 treatments of my 6 Topotecan (5 days in a row equals one treatment) on a 3 week cycle, my gyn/onc switched me to Doxil this past week.   My numbers were going up, and the ascites had to be drained (2 1/2 liters)....now, with Doxil, whew!  I have never been so sick in my life.  I dread the thought of returning in 3 weeks for another dose.  topotecan was not working for me.,,,I will have my 1st anniv of my initail diagnosis next week, and I have never been clear.  I am having a difficult time staying positive;  nothing seems like it will work actually.  There is no quality of life; and this Doxil is so bad.  I couldn't eat for 3 days, and I have been beyond nauseaus.  Just complaining, I guess it is OK to to it on this forum.  Careylyn

[finkaz]

sorry to hear you are having a rough time life is just s--t.  Im going through hell with my mum she too has never been clear please if one type isnt working pester your doc to try another this is your life.  God Bless.

[Lil AJ]

Careylyn, I'm so sorry that you are having to go through this.  I've heard that Doxil can be a nightmare to take but also a lot of women are having good results with it.  I certainly hope it will provide you with a fast and significant drop in your levels followed by an eventual long, happy remission.  Best of luck to you, stay strong, and try to surround yourself with positive energy.  Check out thesurvivormovie.com on the internet, I always find it inspiring.  I hope tomorrow brings a brighter day for you.