Topotecan

Tina Brown
Tina Brown Member Posts: 1,036 Member
in Ovarian Cancer #1
I've been having bloating recently so I had my CA125 taken and went to see my oncologist. My numbers are up from 122 to 1,467. It is so strange because I don't actually feel unwell and where I usually get fluid around my lungs they are currently clear.

Anyway I will be having Topotecan. It is a weekly cycle where you have chemo every day for a week and then 3 weeks off. I will have a port as my veins have kind of disappeared from the last onslaught!!!! I will be starting 12th September.

My biggest hope is that I can still keep my hair and that it doesn't make me feel ill. OH, AND IT WORKS :)

Please, has anyone else had this chemo and how have you been on it?

Tina xxxx
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Comments

  • sarahb74
    sarahb74 Member Posts: 81 Member
    #2
    I think that's the chemo
    they say I'll have next if the doxil I'm on at the moment doesn't work. Let's pray that it works really well for you and pushes your numbers down, never mind your hair! I'm so sorry to hear it's back:(
  • wfisaac
    wfisaac Member Posts: 60
    #3
    Praying that it is a success
    Praying that it is a success and that you respond well to it with very minimal effects.
  • antcat
    antcat Member Posts: 270
    #4
    Hi Tina
    Hi Tina, I was on Topotecan in April & May of this year. But, my schedule was a little different than yours. I was actually getting Avastin & Topotecan on week 1 (1 day only) and then the following 2 weeks I got Topotecan only (1 day only). I unfortunately did not have good results with Topotecan. While on Topotecan, my counts went low and I was very, very tired and for almost a week, I was not feeling good. It was funny because when I got Topotecan on a Friday, by the next week on Wednesday, I felt better only to start the Topotecan again that Friday. Since I've been on Topotecan and I'm on Taxotere now, my counts still seem to be a little on the low side. My primary care doc told me that it's nothing to worry about. My chemo nurses told me that Topotecan is a little rough, but everyone is different. One good thing was that while on Topotecan I didn't lose my hair. Now that I'm on Taxotere I started losing my hair, but I'm okay with that.
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #5
    Tina,
    You will like the
    Tina,
    You will like the port, so much easier. Do you have the cream to put on before chemo? It numbs the area and you will not feel a thing.
    Good Luck Tina!
    Mary
  • Mwee
    Mwee Member Posts: 1,338
    #6
    Ports are a very good thing
    I call mine my third nipple :). They make infusions so much quicker and easier. I'm so sorry that you have to deal with this but let's put that list like this.... IT works!, doesn't make you feel too ill and then you still get to keep your hair. Topotecan is one I haven't been on, unless it's also called Doxil?
    WE'll be right here for you ((((HUGS)))) Maria
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    Mwee said:

    Ports are a very good thing
    I call mine my third nipple :). They make infusions so much quicker and easier. I'm so sorry that you have to deal with this but let's put that list like this.... IT works!, doesn't make you feel too ill and then you still get to keep your hair. Topotecan is one I haven't been on, unless it's also called Doxil?
    WE'll be right here for you ((((HUGS)))) Maria

    Thanks everyone. I am
    Thanks everyone. I am pleased to hear that Topotecan works and you get to keep your hair :) I am also really pleased to be getting a port as it cuts down the time in the chemo clinic.

    I have just re-read my post and how weird that I have used the word "pleased" twice. Who can ever be pleased to be going back on chemo????????????? It just shows how far I am come and have accepted my new way of life :)

    No Maria, Topotecan isn't Doxil. In the UK Doxil is called Caelyx.

    Tina xxxxxxxxxxxxxxxx
  • Mwee
    Mwee Member Posts: 1,338
    #8
    Tina Brown said:

    Thanks everyone. I am
    Thanks everyone. I am pleased to hear that Topotecan works and you get to keep your hair :) I am also really pleased to be getting a port as it cuts down the time in the chemo clinic.

    I have just re-read my post and how weird that I have used the word "pleased" twice. Who can ever be pleased to be going back on chemo????????????? It just shows how far I am come and have accepted my new way of life :)

    No Maria, Topotecan isn't Doxil. In the UK Doxil is called Caelyx.

    Tina xxxxxxxxxxxxxxxx

    AHA... a chemo drug I haven't tried!
    We have come so very far about our thoughts of chemo, haven't we. I think you might feel pleased because you're going to be taking action. I'm glad you get to keep your hair, but as I remember you found ways to rock the bald look.
    (((HUGS))) Maria
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #9
    Mwee said:

    AHA... a chemo drug I haven't tried!
    We have come so very far about our thoughts of chemo, haven't we. I think you might feel pleased because you're going to be taking action. I'm glad you get to keep your hair, but as I remember you found ways to rock the bald look.
    (((HUGS))) Maria

    Bald
    Yes you are right Maria I was comfortable being bald. The first time I lost it it was unknown territory but when I lost it the second time I was upset because I knew how long it takes for it to grow back. Thanks for your comments xxx Tina xxx
  • zinaida
    zinaida Member Posts: 221
    #10
    Tina Brown said:

    Bald
    Yes you are right Maria I was comfortable being bald. The first time I lost it it was unknown territory but when I lost it the second time I was upset because I knew how long it takes for it to grow back. Thanks for your comments xxx Tina xxx

    Hello my teal sisters! Yes,
    Hello my teal sisters! Yes, Tina, I am upset today. In two - three days I will be bold for second time. I start my forth chemo treatment august,9, Paclitaxel and my hear just falling out like crazy... :(
  • carolenk
    carolenk Member Posts: 907 Member
    #11
    zinaida said:

    Hello my teal sisters! Yes,
    Hello my teal sisters! Yes, Tina, I am upset today. In two - three days I will be bold for second time. I start my forth chemo treatment august,9, Paclitaxel and my hear just falling out like crazy... :(

    Sorry to hear this, Zina,
    Sorry to hear this, Zina, I've wondered how you were. This is only temporary. I pray it gets better for you.

    (((hugs)))

    Carolen
  • carolenk
    carolenk Member Posts: 907 Member
    #12
    Dear Tina
    So sorry to hear
    Dear Tina

    So sorry to hear your number jumped up. I think you won't have to be bald again. What a way to end the summer.

    (((hugs)))

    Carolen
  • zinaida
    zinaida Member Posts: 221
    #13
    carolenk said:

    Dear Tina
    So sorry to hear
    Dear Tina

    So sorry to hear your number jumped up. I think you won't have to be bald again. What a way to end the summer.

    (((hugs)))

    Carolen

    Thanks, Carolen for support.
    Thanks, Carolen for support. :)
  • garden gal
    garden gal Member Posts: 212 Member
    #14
    topotecan
    Hello everyone, Joined last Nov. but never posted anything. Saw the post on topotecan. I started this drug about 9 weeks ago and will have 1 more round of it in about 1 more week. I have 5 days of topo. and then 3 weeks off. Didn't lose my hair, no nausea and so far feeling ok. This is the 6th drug I've been on to fight this disease. Before the next round I will be having a ca125 done to see how we are doing. I am a 3c ovarin cancer survivor, going on a little over 2 years since dx. Kathy
  • jloe
    jloe Member Posts: 174
    #15
    I've had Topo
    Had it once a week for three on & 1 off. no side effects at all. In the end, I had slight progresion so I'm on another combo..... Alimta/Carbo. Once every 3 weeks for 6 cycles then a CT/PET. we'll see. The Topo didn't cure it but it certainly helped keep it at bay. ((((Big ol hugs Tina)))) j.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #16
    garden gal said:

    topotecan
    Hello everyone, Joined last Nov. but never posted anything. Saw the post on topotecan. I started this drug about 9 weeks ago and will have 1 more round of it in about 1 more week. I have 5 days of topo. and then 3 weeks off. Didn't lose my hair, no nausea and so far feeling ok. This is the 6th drug I've been on to fight this disease. Before the next round I will be having a ca125 done to see how we are doing. I am a 3c ovarin cancer survivor, going on a little over 2 years since dx. Kathy

    Thanks for all of your responses
    Thanks for all of your responses about Topotecan. I am really pleased to learn that you don't feel too sick and that you don't lose your hair :)

    I start my chemo in just over a week so I am hoping I am not too ill either.

    Tina xxx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #17
    garden gal said:

    topotecan
    Hello everyone, Joined last Nov. but never posted anything. Saw the post on topotecan. I started this drug about 9 weeks ago and will have 1 more round of it in about 1 more week. I have 5 days of topo. and then 3 weeks off. Didn't lose my hair, no nausea and so far feeling ok. This is the 6th drug I've been on to fight this disease. Before the next round I will be having a ca125 done to see how we are doing. I am a 3c ovarin cancer survivor, going on a little over 2 years since dx. Kathy

    Hi Kathy
    I am pleased to read that your topotecan schedule is the same as mine will be, every day for a week and then 13 weeks off. My chemo nurses have told me I will lose my hair but you said you didn't. I really really can't cope with losing my hair a 3rd time. I pretend I don't mind but it would break my heart if I lost it again. So I am really hoping I don't lose it this time.

    I have PPC and this will be my 3rd lot of chemo, my previous chemo's were carbo/taxol.

    I will let you know how it goes and I hope you are right about keeping my hair :)
    Tina xx
  • garden gal
    garden gal Member Posts: 212 Member
    #18
    Tina Brown said:

    Hi Kathy
    I am pleased to read that your topotecan schedule is the same as mine will be, every day for a week and then 13 weeks off. My chemo nurses have told me I will lose my hair but you said you didn't. I really really can't cope with losing my hair a 3rd time. I pretend I don't mind but it would break my heart if I lost it again. So I am really hoping I don't lose it this time.

    I have PPC and this will be my 3rd lot of chemo, my previous chemo's were carbo/taxol.

    I will let you know how it goes and I hope you are right about keeping my hair :)
    Tina xx

    topotecan
    Sorry I havn't responded sooner, Having trouble with my arm and hand,not cancer related. The nurses told me too that my hair would fall out, but it hasn't yet. Will be starting my 3rd round next monday, here's hoping the numbers will come down. I started with carbo/taxol, then doxil,gemzar, taxol, carbo again, now topotecan. Hoping and praying this works for you. I'm now happy if they can just keep the numbers down and the scans are not so ugly. Just keep saying if you look beyond the clouds the sun is still shinning. Kathy
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #19
    garden gal said:

    topotecan
    Sorry I havn't responded sooner, Having trouble with my arm and hand,not cancer related. The nurses told me too that my hair would fall out, but it hasn't yet. Will be starting my 3rd round next monday, here's hoping the numbers will come down. I started with carbo/taxol, then doxil,gemzar, taxol, carbo again, now topotecan. Hoping and praying this works for you. I'm now happy if they can just keep the numbers down and the scans are not so ugly. Just keep saying if you look beyond the clouds the sun is still shinning. Kathy

    Dear Kathy
    Thank you for replying. Everyone who has responded to my question has confirmed that your hair doesn't fall out. I am gratified by this as I don't think I could handle it mentally if I lose my hair a 3rd time. I will take the precaution of wearing a "cold cap" and I am expecting it to be uncomfortable. But it is a small price to pay if I get to keep my hair. I really hope Topo works for you and let me know where you are with your numbers.

    Cheers Tina xx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #20
    jloe said:

    I've had Topo
    Had it once a week for three on & 1 off. no side effects at all. In the end, I had slight progresion so I'm on another combo..... Alimta/Carbo. Once every 3 weeks for 6 cycles then a CT/PET. we'll see. The Topo didn't cure it but it certainly helped keep it at bay. ((((Big ol hugs Tina)))) j.

    Hello Jloe
    I am pleased you have had no side effects from Topo. But I am sad it didn't work for you. I've not heard of Alimta but I hope it is the ONE that knocks the numbers down.

    Take care Tina xx
  • KarateMama.Melody
    KarateMama.Melody Member Posts: 2
    #21
    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.

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