Starting Topotecan -- Any advice or info on success or side effects?

[momofsandj]

Hi -- After a total of 12 cycles of carbo/taxol, and 6 of Doxil, over a 5 year period, with Tomoxifen and Arimidex in between, I will be starting on Topotecan.  I know the success rate isn't overwhelming, but they keep wanting to work their way through the standard chemos before trying anything in trials -- I had real serious skin problems with Doxil, and platelet and rbc and neutropenia issues with carbo/taxol --- Anyone have any advice re recent experiences with Topotecan?   I was originally diagnosed 3C in 2003 and I'm getting tired of always fighting this nightmare of a disease ---
Thanks
Jeanne

[momofsandj]

Chris, I'm glad I can help you even if it is a little bit -- you are an inspiration to us all ----

By the way, after the first week of having Topo every day, it really does seem to be pretty easy to tolerate ---- once they got the queasiness under control with decadron, I'm just tired and have some muscle weakness --- it's a blessing after the awful experience I had with Doxil. -- It would be nice if it works too.......after that it's Avastin then who knows what else but it will be years before we all run out of things to try and by then someone should be smart enough to find our version of retuxin

Love to all
Jeanne

[crecco]

  Kim the girls are right, Topotecan is a very easy chemo to tolerate and I think that is important considering your moms age. Sorry we cannot help you much more about the lung cancer and the recurrence, but for most of us, our cancers are all ovarian cancer. If it is in our lungs or liver, it spread there. So speaking for myself, I am just not real familiar with lung cancer, and how or where it recurrs. But I can tell you that I would try the Topotecan for your mom.

Jeanne,
Once again I have to thank you for your kind words. I too have the hope that there will continue to be new drugs out there for us to try. That has been a fear of mine for a long time now, that one of these days I will run out of chemos that I can try. I have voiced this fear to my onc and he has told me more than once that there are hundreds of drugs out there that we can try. So I just leave it at that. I may be on number 6, but if I can believe him, then I have not even made a dent yet.
  Oh and here is another site if you want to research chemo meds. It is devoted to nothing but chemo, what it is, side effects, explanations of hundreds of chemo drugs and what they are used for. It is    chemocare.com

  PS  I loved the story of your 11 year old with "ED"  LOL
      Chris

[momofsandj]

Jane ----Thanks for the info -- so far constipation has been a real problem but I will adjust with colace and have been munching prunes -- I am glad to hear it works for someone -- maybe it will work for me too ----

Kimmy -- Topo is definitely the easiest to tolerate of the ones I've had at an 86 you mom needs to have something that might help but won't kill her with side effects in the process -- good luck to you and her

Jeanne

[jane65]

Hi Jeanne, I've been on Topotecan since June. I have stage 3C and this was my first relapse after a 3-4 month remission after the usual carbo/taxol. I've found it not as bad as my first chemo, and a tolerable chemo with fatigue, constipation,hemoglobin and rbc issues. I get Aranesp shots to deal with the blood issues and take Miralax, colace and prune juice for the constipation. The good news is that Topo. is apparently working for me as my CA125 is dropping a bit every month and my surgeon can't feel the lymph nodes which the OVCA has metastasized to. Hope this info helps you, good luck. Jane

[kimmyb13]

my mother is 86. had lung cancer and chemo.  the lung tumor was mostly resolved/  Now 5 mos later the lung cancer is back and also in her liver.  they are recommending topotecan.  anyone have any advice.  Just don/t know what to do.  Kim

[momofsandj]

Thanks Chris -- and I have hope for all of us that there will continue to be new drugs to try -- the list seems to be growing more now than ever before -- and my doctor told me yesterday that even though mine is not aggressive it will always be a question of when I will need chemo again, not if......what a way to live -- I'll try to use your strength as my role model
All the best
Jeanne

[crecco]

Jeanne,
  I thank you for your kind words above, and I hope that Topotecan will help you.
As much as I would love to have a break, I do not look for that to ever happen. My cancer was aggressive so bascially the chemo is what is keeping me alive. But I am ok with that. I accepted the fact that chemo was going to be just a part of my life from now on. I just hope that we can continue finding one that will work when the previous one stops working.
  I wish you the very best.
    Chris

[momofsandj]

Thanks ladies for your insight -- Joanne I hope they do find your magic bullet -- I never went into remission after the second round of chemo or the the third and your situation sounds like my sister's (you spell your name the same way she did too) except that she passed so long ago that they didn't even have these drugs we are all using.  Jan, your comments reinforced that I made the right decision to not start a new job (last Thursday was supposed to have been my start date) and stay where i am where I can go out on disability --- I am already having trouble with fatigue and I am a type A person myself -- can't imagine starting a new job and being wiped out at the same time.  I just hope it doesn't make me too sick -- it is so upsetting to my family.
Thanks again and I wish you both luck too ---I did hit the topo website but I wanted to hear from real people too.
It's nice to have you all to post to
Jeanne

[Jan214]

I was on Topo from June until Sept when they realized it jsut wasn't working.  My numbers soared and they had never done that before on chemo.  The side effects were mostly fatigue.  I am not talking a little tired that you can push through.  I am talking overwhelming tiredness where it was a chore to lift my head.  I am normally a Type A manic person, but that made me not care one bit that I couldn't do anything.  I would suggest looking at the website for Topo as there is a lot of info on there that your onc probably didn't tell you.
Good luck,
Jan

[jlock]

Hi, I just finished Topotecan (3 weeks on and 1 week off) on June 2nd.  I found it an easy chemo to tolerate,but it did not give me much remission time (only 9 weeks) I was also able to make it through without any booster shots,which was a 1st for me. I had some head aches,nausea and fatique.but all was minimal and easily controlled. I can understand how you feel about all this chemo.  I wish they would find the magic bullet for me.  I've had over 54 treatment thus far and am just coming up to 4 years since diagnosis.  I feel like I've been on chemo non stop,but thankfully I haven't.  Good luck with the Topo I hope it gives you permenent remission~~~Joanne

[momofsandj]

Hi Chris -- thanks for replying -- I've been seeing your posts since I found this website -- I'm so sorry you haven't had a break at all --- that's how it went with my sister, and now it seems to be going that way with me --- they tried the arimidex just to see if I could get my strength (and skin) back before trying something else, but that made me sick anyway so I'm not sure how much benefit the "break" of 3 months was worth.  The Doxil didn't work for me and I'm trying to stay positive about the Topo even though it has a low success rate --- maybe it won't make me too sick --- and if it holds back the cancer from spreading out of the pelvis, I guess it's worth it.  Progression free survival is the name of the game ---- I'd prefer that cure, stop, defeat the cancer be the name of the game, but that isn't going to happen anytime soon.......  My heart has gone out to you before and still does --- But you are still here and helping all of us --- I wouldn't be as upset about me except that I have an 11 year old who is ADD and ED (make you laugh.....he saw a commercial and thought he had erectile dysfunction --ED get it!)  and an almost 14 year old daughter who is turning vicious (don't know if it's the age or personality) not to mention a husband, all who have their worlds turned upside down repeatedly.  I'm hanging in there by my fingernails.  And I appreciate your support -- thank you and I hope you do get a break.....
Jeanne

[crecco]

I was on Topotecan  around the first of the year. I found it to be one of the easiest chemo I have been on. Unfortunately it did not work for me.
  I have read of many women that have had success with it though.
I understand your frustration at the constant battle. It does get old real fast. But it seems that we don't have much choice. I was dx at stage IV in Nov 05 and have never been off of chemo except for the 6 weeks following my surgery, so I really do understand.
Hang in there.
  Chris