CancerCompass message board discussion started by KristaJ on 2/12/2008 http://www.cancercompass.com/message-board/message/all,20898,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Can anyone tell me of their experiences with Topotecan by itself? KristaJ Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 KristaJ wrote:Can anyone tell me of their experiences with Topotecan by itself?HI -I have been on Topotecan (Hycamtin) since July of '07. Side effects were minimal. I did have hair loss though. Any nausea was controlled by IV Kytril for the first day and then Aloxi for the next 3. I had treatments 4days on week one, then off for weeks 2 & 3 and then back to week 1 again and 4 days of treatment. 21 day cycle. I had some shrinkage, but then I had some progression too. I have been on topotecan alone due to an allergy to carboplatin. I am going to try to get desensitized to the carbo, so I can go back on that with taxol. Hope it works. I found topotecan was a breeze  compared to the carbo/taxol. I also did Gemzar alone from 9/06 thru 6/07.That wasn't too bad either. I am stage IV dx'd 4/04. Best of  luck to you.Diane T. Diane t. Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 Diane t. wrote: On 2/12/2008 KristaJ wrote:Can anyone tell me of their experiences with Topotecan by itself?HI -I have been on Topotecan (Hycamtin) since July of '07. Side effects were minimal. I did have hair loss though. Any nausea was controlled by IV Kytril for the first day and then Aloxi for the next 3. I had treatments 4days on week one, then off for weeks 2 & 3 and then back to week 1 again and 4 days of treatment. 21 day cycle. I had some shrinkage, but then I had some progression too. I have been on topotecan alone due to an allergy to carboplatin. I am going to try to get desensitized to the carbo, so I can go back on that with taxol. Hope it works. I found topotecan was a breeze  compared to the carbo/taxol. I also did Gemzar alone from 9/06 thru 6/07.That wasn't too bad either. I am stage IV dx'd 4/04. Best of  luck to you.Diane T.Hi Diane, I am so thrilled that you responded, and with what I consider to be good news. The side effects I cannot tolerate (mainly because I have to work) are vomitting and nausea. The doctors told me there wouldn't be much of that but you know how they can tend to make things seem better than they are. I can't believe that you have been doing this since 4/04. Although I'm so happy you've survived this long, I can't imagine doing this for 4 years. You are so brave to WANT to go back on carbo/taxol. There is no way I will ever do that again. What is your status now? What has been your longest break with no chemo through all of this? What exactly keeps you going?My schedule for the Topotecan is every Friday for 3 weeks in a row, and then off 1 week and repeat that schedule for at least 6 months. Maybe my effects will be lessened since their spreading them out more? Who knows, as we both know, everyone is so different. Have you been on this message board long? I didn't think I would ever find someone stage4 that was still alive, and here you are? Did you reply to the post asking if there were any stage4's still alive? I know it's crazy,but I want to know that there are people out there just like me.So, thank you for replying. It really does ease my mind a little to know you're still fighting!How do you not say enough is enough? You don't have to answer that if it is uncomfortable. Anyway, I'm thrilled to talk to you and I hope to talk again soon. I need to stay connected to my fellow soldiers. It gives me inspiration and a need to keep going. Where do you live? Can't wait to hear back from you.  Love, KristaJ  KristaJ Wed, 13 Feb 2008 00:00:00 GMT  On 2/13/2008 KristaJ wrote: On 2/12/2008 Diane t. wrote: On 2/12/2008 KristaJ wrote:Can anyone tell me of their experiences with Topotecan by itself?HI -I have been on Topotecan (Hycamtin) since July of '07. Side effects were minimal. I did have hair loss though. Any nausea was controlled by IV Kytril for the first day and then Aloxi for the next 3. I had treatments 4days on week one, then off for weeks 2 & 3 and then back to week 1 again and 4 days of treatment. 21 day cycle. I had some shrinkage, but then I had some progression too. I have been on topotecan alone due to an allergy to carboplatin. I am going to try to get desensitized to the carbo, so I can go back on that with taxol. Hope it works. I found topotecan was a breeze  compared to the carbo/taxol. I also did Gemzar alone from 9/06 thru 6/07.That wasn't too bad either. I am stage IV dx'd 4/04. Best of  luck to you.Diane T.Hi Diane, I am so thrilled that you responded, and with what I consider to be good news. The side effects I cannot tolerate (mainly because I have to work) are vomitting and nausea. The doctors told me there wouldn't be much of that but you know how they can tend to make things seem better than they are. I can't believe that you have been doing this since 4/04. Although I'm so happy you've survived this long, I can't imagine doing this for 4 years. You are so brave to WANT to go back on carbo/taxol. There is no way I will ever do that again. What is your status now? What has been your longest break with no chemo through all of this? What exactly keeps you going?My schedule for the Topotecan is every Friday for 3 weeks in a row, and then off 1 week and repeat that schedule for at least 6 months. Maybe my effects will be lessened since their spreading them out more? Who knows, as we both know, everyone is so different. Have you been on this message board long? I didn't think I would ever find someone stage4 that was still alive, and here you are? Did you reply to the post asking if there were any stage4's still alive? I know it's crazy,but I want to know that there are people out there just like me.So, thank you for replying. It really does ease my mind a little to know you're still fighting!How do you not say enough is enough? You don't have to answer that if it is uncomfortable. Anyway, I'm thrilled to talk to you and I hope to talk again soon. I need to stay connected to my fellow soldiers. It gives me inspiration and a need to keep going. Where do you live? Can't wait to hear back from you.  Love, KristaJ Krista  My name is vicki, I have stage 4 ov ca.  Was diagnosed in Jan 07.  I'm stiill here.  Had 6 rounds of Carbo/Taxol, had 5 weeks of remission and now I'm on Gemzar and Cisplatin 12 rounds, am sched to have my last treatment next Wed.  Then a Cat Scan, and we'll take it from there. Not sure what drug will come next if the cancer is still there and growing.. I have my doubts about remission, but still am hopeful.  Im not sure how I feel about  quality versus quantity of life, I'm hoping I never have to make that decision.  I've been very lucky with the treatments, did not have too many side effects and did not have to work thru them.  I too am glad to hear that Diane T is still here ....  gives me hope  This isn't an easy fight, and I truly wish we had a cure for this awful disease...  I wish you luck, and will keep you in my prayers.vicki vickiv74 Thu, 21 Feb 2008 00:00:00 GMT