Topotecan

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  • karen1951
    karen1951 Member Posts: 103
    #22
    KarateMama.Melody said:

    Topotecan
    Hi Tina (and anyone else who might have some advice). I am curious about your results and side effects with Topotecan. I am 40 yrs old, and this stupid disease has found me again (IIIc in 2006). OVCA came back with a passion in Aug 2010, so much so that surgery was not an option. After 6 months of Avastin/Cisplatin, the tumors were down to a manageable size & I underwent tumor debulking & liver resection in Feb 2011. The onc put me on Doxil for maintenance, but due to the issues with the availability of Doxil they have to change therapies. My CA-125 was 10 in August & now is 49 with a PET showing disease trying to pop up on my right adrenal gland and right lobe of liver. I am scheduled to start Topotecan this Tuesday. I feel so blessed to be here & do not want to complain but I am a single mom with an incredible 7 yr old boy, and also worry about the hair loss...not for me really (although I was just getting my hair back), but because now I will look sick again. Did you experience hair loss on Topotecan, and how bad were the side effects (sickness & fatigue?)? Any advice is appreciated.

    good luck with the
    good luck with the topotecan....i will be starting on it dec 9th....so i am very interested to know how other girls have handled it.....i heard the biggest side effect was nausea which is what i dread the most. i was diagnosed stage IV august 2010...had a 10 month remission but now theres a small mass in my upper abdomen and some lymph node lighting up on petscan. boy, is my oncologist disgusted with this doxil shortage...that's what he wanted to put me on. it's unnerving to think you are going to get the "2nd best" drug...but i guess recurrence is such a "gray" area that it's hit or miss for any drug to work. prayers to all you wonderful brave girls and happy thanksgiving...karen
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #23
    KarateMama.Melody said:

    Topotecan
    Hi Tina (and anyone else who might have some advice). I am curious about your results and side effects with Topotecan. I am 40 yrs old, and this stupid disease has found me again (IIIc in 2006). OVCA came back with a passion in Aug 2010, so much so that surgery was not an option. After 6 months of Avastin/Cisplatin, the tumors were down to a manageable size & I underwent tumor debulking & liver resection in Feb 2011. The onc put me on Doxil for maintenance, but due to the issues with the availability of Doxil they have to change therapies. My CA-125 was 10 in August & now is 49 with a PET showing disease trying to pop up on my right adrenal gland and right lobe of liver. I am scheduled to start Topotecan this Tuesday. I feel so blessed to be here & do not want to complain but I am a single mom with an incredible 7 yr old boy, and also worry about the hair loss...not for me really (although I was just getting my hair back), but because now I will look sick again. Did you experience hair loss on Topotecan, and how bad were the side effects (sickness & fatigue?)? Any advice is appreciated.

    Hello Karate Mama
    Sorry to hear the beast is back but your numbers are very low which can only be a good thing. Regarding Topotecan - this is proving to be a wonder drug for me. My numbers are plummeting on a downward trend. My bloating symptoms have vertually gone and the fluid I used to have around my lungs has also gone. So a big result for me.

    Side effects - to be honest very little. I am having treatment every day for a week (30 minutes long so small amounts) and then I get 2 weeks off. I do get nauseous and have been given good anit-sick meds. Hair loss - weird. I have lost most of my body hair but not my eye lashes and eye brows. I also still have all of the hair on my head lol but I have been wearing a cold cap. But I know another lady on Topo who does not wear a cold cap and she still has her hair too.

    I have just finished my 4th round and I am feeling really well and hopfull that my CT scan results (I get them on Tuesday) will be good. My numbers have gone down from 1,727 to 327 in just 3 cycles.

    I really hope you have the same positive results as me. Take care and let me know how you get on.

    Tina xxx
  • KarateMama.Melody
    KarateMama.Melody Member Posts: 2
    #24
    Tina Brown said:

    Hello Karate Mama
    Sorry to hear the beast is back but your numbers are very low which can only be a good thing. Regarding Topotecan - this is proving to be a wonder drug for me. My numbers are plummeting on a downward trend. My bloating symptoms have vertually gone and the fluid I used to have around my lungs has also gone. So a big result for me.

    Side effects - to be honest very little. I am having treatment every day for a week (30 minutes long so small amounts) and then I get 2 weeks off. I do get nauseous and have been given good anit-sick meds. Hair loss - weird. I have lost most of my body hair but not my eye lashes and eye brows. I also still have all of the hair on my head lol but I have been wearing a cold cap. But I know another lady on Topo who does not wear a cold cap and she still has her hair too.

    I have just finished my 4th round and I am feeling really well and hopfull that my CT scan results (I get them on Tuesday) will be good. My numbers have gone down from 1,727 to 327 in just 3 cycles.

    I really hope you have the same positive results as me. Take care and let me know how you get on.

    Tina xxx

    topotecan
    Hi Tina. Thank you for responding. I had my first infusion on Tuesday, 11/29/11. I have an infusion once every week for three weeks, fouth week off, and then repeat for next six months. It helps make things a little less scary when you can talk and share with others that are going through this, too. How were your CT Scan results from Tuesday?

    Melody

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