anyone ever on topotecan,please respond, so upset

[mariak]

After having surgery in Oct ' '04 for stage 3C and then having a year and 1/2 remission, I've be battleing a 2.6cm lesion down in the colon area. 2nd time on taxol gave me a 6 month remission. 10 months on doxil brought my ca125 in normal range after 2nd treatment. This past June and July numbers went up again. CAT scan showed same lesion still there. I started topotecan July 28th with a ca125 of 142. After 1st round, 3 infusions, ca124 dropped to 42. Had a week rest them had 2nd round and ca125 is now 59. Is this normal to happen? Did anyone ever go through this?

[momofsandj]

I don't know if they give anything else with topo -- my doctor mentioned giving it alone -- I heard about the thalidomide from this site -- I figure if it mutated normal cel development in utero maybe it would confuse the cancer and mutate it back to normal, but if that isn't a cockeyed laymen's logic I don't know what is! --- I'm hoping to get at least a few months on the arimidex before I have to figure out the topo -- And Marie, I just wish you luck -- when I was on Doxil it seemed to work then my counts went up then they went down again --- I wish I knew something about topo to make you feel better -- good luck and I hope your next CA is better and the CT shows shrinkage

Jeanne

[Jan214]

Dang, you have been really lucky.  I don't think I know anyone with our stage  that has had those kinds of remissions.  Good for you.  It must have been nice to live like a normal person for awhile and not have to be going to chemo, doing bloodwork, and constantly worrying.  

As far as the Topo goes, my onc said it has to find it's level before it starts to really come down.  It appears that it is working well for you at least for now.  As Joanne said, it could be an infection, sinus problems, a toothache, a cut that got a little infected, etc.  For that small of a rise it is quite possible.  
I started on Topo in June and it did not work at all for me.  My CA was 92 when I started, 149 after 1st month, 147 after 2nd month, and 192 after 3rd month.  My onc had me do a fourth month, but is stopping it now.  I have a CT on the 30th and a CA on the 29th.  We shall see from there.

I have heard that Topo is often given with a second agent because the Topo splits the cells and the other drug is supposed to come in behind and wipe out the divided cells.  I asked my onc about that, but to tell you the truth, I don't remember a thing he said that day.  I am not sure about Thalidomide.  Is that the only choice for a 2nd agent?  My mom took it for morning sickness with my little sister and she is lucky she didn't come out with 3 heads or something.  It worked great for the nausea, but the horrific birth defects had it banned almost as soon as they started using it.  It would scare the heck out of me to take it.  

It sounds like you have been doing really well and I pray that this little rise is just a small bump in the road.  I hope your next CA is better and that you can continue with the Topo.  

Good luck
Jan

[jlock]

I had 6 cycles of Topo and between my 54-5 cycle it rose up by 50 points but then it came down..you might have a small infection or inflammation somewhere.  I hope for you that it goes back down..and you get a nice long remission..(((hugz))~~Joanne

[momofsandj]

Someone said that Topotecan worked better when combined with thalidomide -- don't know much more about it than that, although when I have chemo again (when the Arimidex doesn't hold my counts steady anymore) they are threatening me with topotecan next.

[Hazel30]

My Mom just switched to a different drug from topotecan.  It took 3 treatments for the ca-125 to drop. Each treatment is 3 infusions.  After 4th treatment, ca-125 went up some.  CT scan showed slight progression in disease so the doctor is switching to a different drug..avastin/cytoxane.  You may want to redo the ct scan.  If disease is stable, then thats good. If disease progressed then the drug is no longer working.