Has anyone done Topotecan chemotherapy

antcat
antcat Member Posts: 270
Hi, I was wondering if anyone has had Topotecan chemo treatments. What I'd like to know is were there many side effects, how was it tolerated, was it by IV, I noticed that there is also a pill, although I don't know if it is approved for ovarian cancer. Anyway, any information that could be given would be greatly appreciated.

Thanks.

Comments

  • kayandok
    kayandok Member Posts: 1,202 Member
    It seems that
    a lot of people do us it as a 3rd line or even 4th line chemo, but not mamy talk about it. NOt sure if that s because it doesn't work, or if by the tme they try it, they are way down the road and die shortly thereafter, not leaving a chance to share. i don't mean to be so morbid, but just had that thought.

    i think Joni is on it, in NY, and have yet to hear results. It wll proabably be my next one, so I am interested too.

    kathleen
  • jloe
    jloe Member Posts: 174
    Sorry, I Iave not been on here for a LONG TIME!
    I'm sure I missed a lot of news about everyone, but I have been swamped with work and getting on with stuff.

    antcat,
    I've been on almost everything out here as far as chemo and was only NED for a few months one year after surgery and chemo (2006 - 2007). Since then I’ve had many surgeries and lots of chemo. My CA125 counts have always been below 20 since my initial surgery and first chemo treatment. Not the best indicator for me. I am now on Topotecan alone (3 on 1 off – 5mg IV). I am to have a total of 4 and then the CT/Pet. I am going to see if I can bump that scan up before the 4th but we'll see. I have completed one 3 on 1 off and am in the middle of the second. Pre-meds are decodron steroid and Reglan anti-nausea. The Reglan is great because it does not cause any constipation and that was always a big issue for me. I have NO side effects what so every for now. The other nice thing for me is that I’m only at the treatment center for about an hour and a half from start to finish and then on my way to the office. One time I was a little tired the next day but not since. Blood work has been holding well so no issues there (wbc, rbc). This regimen has been the easiest to tolerate for me so far. I Have a 2 areas of disease that have had very little progression so am considered “chronic but stable” . I have been told by my gyn/onc, onc nurse and several other gyn/oncs (one of who many on here have also seen at MSKCC) that as it stands for me this is not the end of the road. They are telling me there are other treatments and there are several that I may revisit. As you know, everyone’s situation is different even though we can have lots of similarities and this can always turn on a dime.
    I hope this helps and you have good luck with this.

    Kathleen,
    I see you have survived tsunami! Great news for that!

    J
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    jloe said:

    Sorry, I Iave not been on here for a LONG TIME!
    I'm sure I missed a lot of news about everyone, but I have been swamped with work and getting on with stuff.

    antcat,
    I've been on almost everything out here as far as chemo and was only NED for a few months one year after surgery and chemo (2006 - 2007). Since then I’ve had many surgeries and lots of chemo. My CA125 counts have always been below 20 since my initial surgery and first chemo treatment. Not the best indicator for me. I am now on Topotecan alone (3 on 1 off – 5mg IV). I am to have a total of 4 and then the CT/Pet. I am going to see if I can bump that scan up before the 4th but we'll see. I have completed one 3 on 1 off and am in the middle of the second. Pre-meds are decodron steroid and Reglan anti-nausea. The Reglan is great because it does not cause any constipation and that was always a big issue for me. I have NO side effects what so every for now. The other nice thing for me is that I’m only at the treatment center for about an hour and a half from start to finish and then on my way to the office. One time I was a little tired the next day but not since. Blood work has been holding well so no issues there (wbc, rbc). This regimen has been the easiest to tolerate for me so far. I Have a 2 areas of disease that have had very little progression so am considered “chronic but stable” . I have been told by my gyn/onc, onc nurse and several other gyn/oncs (one of who many on here have also seen at MSKCC) that as it stands for me this is not the end of the road. They are telling me there are other treatments and there are several that I may revisit. As you know, everyone’s situation is different even though we can have lots of similarities and this can always turn on a dime.
    I hope this helps and you have good luck with this.

    Kathleen,
    I see you have survived tsunami! Great news for that!

    J

    Topotecan may be next for Nancy & for me, too.
    I am happy to hear that this is an easy chemo to bear. I still have Gemzar that I haven't taken, but I doubt that my bone marrow will allow that one for long. But if Topotecan isn;t too hard on platelets, RBC & WBC, that may be the next one for me. Of course, I'm HOPING my current cytoxin/avastin regime is working, but it's good to look ahead and be prepared.

    I hope someone posts a success story with topotecan. I need an EASY chemo but I sure would love it to be an EFFECTIVE one.
  • kayandok
    kayandok Member Posts: 1,202 Member
    jloe said:

    Sorry, I Iave not been on here for a LONG TIME!
    I'm sure I missed a lot of news about everyone, but I have been swamped with work and getting on with stuff.

    antcat,
    I've been on almost everything out here as far as chemo and was only NED for a few months one year after surgery and chemo (2006 - 2007). Since then I’ve had many surgeries and lots of chemo. My CA125 counts have always been below 20 since my initial surgery and first chemo treatment. Not the best indicator for me. I am now on Topotecan alone (3 on 1 off – 5mg IV). I am to have a total of 4 and then the CT/Pet. I am going to see if I can bump that scan up before the 4th but we'll see. I have completed one 3 on 1 off and am in the middle of the second. Pre-meds are decodron steroid and Reglan anti-nausea. The Reglan is great because it does not cause any constipation and that was always a big issue for me. I have NO side effects what so every for now. The other nice thing for me is that I’m only at the treatment center for about an hour and a half from start to finish and then on my way to the office. One time I was a little tired the next day but not since. Blood work has been holding well so no issues there (wbc, rbc). This regimen has been the easiest to tolerate for me so far. I Have a 2 areas of disease that have had very little progression so am considered “chronic but stable” . I have been told by my gyn/onc, onc nurse and several other gyn/oncs (one of who many on here have also seen at MSKCC) that as it stands for me this is not the end of the road. They are telling me there are other treatments and there are several that I may revisit. As you know, everyone’s situation is different even though we can have lots of similarities and this can always turn on a dime.
    I hope this helps and you have good luck with this.

    Kathleen,
    I see you have survived tsunami! Great news for that!

    J

    Joni,
    thanks for the update on topo. Sounds encouraging.
    k
  • jloe
    jloe Member Posts: 174
    WBC & RBC
    I have had my spleen removed so from what I understand it's a plus for not having a big drop in the RBC. I had a few issues with that a long time ago with other treatments. Gemzar was also tolerable for me.
  • jloe
    jloe Member Posts: 174

    Topotecan may be next for Nancy & for me, too.
    I am happy to hear that this is an easy chemo to bear. I still have Gemzar that I haven't taken, but I doubt that my bone marrow will allow that one for long. But if Topotecan isn;t too hard on platelets, RBC & WBC, that may be the next one for me. Of course, I'm HOPING my current cytoxin/avastin regime is working, but it's good to look ahead and be prepared.

    I hope someone posts a success story with topotecan. I need an EASY chemo but I sure would love it to be an EFFECTIVE one.

    I did avastin an cytoxin (oral 50mg) too
    I was on avastn and taxotere after another big surgery so treatment was very delayed with the avastin because it would interfere with the bowel healing. Here's how it went:

    • Big bowel surgery
    • Thoracic surgery 3 weeks later (remove lymph node in the center of my upper chest)
    • started taxoter 6 weeks after the surgeries
    • avastin after 2months (taxoter 3 on 3rd week avastin)

    • after 4 avastins, CT/Pet (6 months after the bowel surgry) small nodules in the same 2 places

    • gyn/onc continued to hammer away with the avastin & cytoxin (daily oral 50mg). Blood pressure was becoming an issue and the BP meds were not controlling it as they should have and too much protein in the urine.

    • Next CT/Pet almost 0% progression. This was a good thing.

    • Now I’m on the Topotecan.

    I think what I'm trying to say is that I'm living and existing with this and I think that's what many of us are doing. I realized that I have to because that's how it is going. I don't mean to be the downer but it's seems to be my situation.

    I think that's a picture of you in the DR? Love it!
  • kayandok
    kayandok Member Posts: 1,202 Member
    jloe said:

    WBC & RBC
    I have had my spleen removed so from what I understand it's a plus for not having a big drop in the RBC. I had a few issues with that a long time ago with other treatments. Gemzar was also tolerable for me.

    I had my spleen
    removed about two years ago with my second debulk, and have come to realize there is a PLUS side to removing the spleen. I have joked with my husband that my surgeon probably did it on purpose to help me out. I have yet to have a blood transfusion or blood booster with the chemo.
    k
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    kayandok said:

    I had my spleen
    removed about two years ago with my second debulk, and have come to realize there is a PLUS side to removing the spleen. I have joked with my husband that my surgeon probably did it on purpose to help me out. I have yet to have a blood transfusion or blood booster with the chemo.
    k

    I GOTTA get my spleen out somehow I guess!
    I still have my spleen and can't imagine how I'd talk my oncologist into suregry to remove it. But if getting rid of it helped me to keep my blood labs good, sounds like it might be worth it. I asked my oncologist about topotecan or gemzar on Tuesday when my CA125 creeped up for the 1st time on avastin/cytoxin and my blood labs were all low. He said "Your bone marrow will never hold up to Gemzar and NOTHING is harder on blood counts as topotecan!" When I asked "What's next then?", he replied "We'll come up with something." (I'm not happy with that vagueness. But he at least let me get Avastin even with my white count lower than the 'safe chemo level', as long as I went back the next day for Nuelasta. But I have to take a 2-week break from the cytoxin to see if my blood counts come up. I have that 'wifty' feeling I get when my RBC is low. And I scratched my poison ivy yesterday without thinking and was left with long lines of tiny blood blisters and purple bruises where my fingernails raked up my leg: Low Platelets for sure! My bone marrow is really shot.

    Does anyone ever get their spleen removed JUST so their blood counts stay better? I've had 4 blood transfusions for low RBC and 1 platelet transfusion in the past 2 1/2 years.
  • kayandok
    kayandok Member Posts: 1,202 Member

    I GOTTA get my spleen out somehow I guess!
    I still have my spleen and can't imagine how I'd talk my oncologist into suregry to remove it. But if getting rid of it helped me to keep my blood labs good, sounds like it might be worth it. I asked my oncologist about topotecan or gemzar on Tuesday when my CA125 creeped up for the 1st time on avastin/cytoxin and my blood labs were all low. He said "Your bone marrow will never hold up to Gemzar and NOTHING is harder on blood counts as topotecan!" When I asked "What's next then?", he replied "We'll come up with something." (I'm not happy with that vagueness. But he at least let me get Avastin even with my white count lower than the 'safe chemo level', as long as I went back the next day for Nuelasta. But I have to take a 2-week break from the cytoxin to see if my blood counts come up. I have that 'wifty' feeling I get when my RBC is low. And I scratched my poison ivy yesterday without thinking and was left with long lines of tiny blood blisters and purple bruises where my fingernails raked up my leg: Low Platelets for sure! My bone marrow is really shot.

    Does anyone ever get their spleen removed JUST so their blood counts stay better? I've had 4 blood transfusions for low RBC and 1 platelet transfusion in the past 2 1/2 years.

    Spleen
    I did have a tumor in my spleen, to make myself clear, so no one thinks I was serious about my surgeon intentionally taking it out, but have often thought about how it really could be beneficial, especially for the bone marrow.

    Linda, I'm sorry to hear that your bone marrow is so shot!!!! I did not know that topo was so hard on your blood. My next one will probably be irinotecan, which is basically the same as topo. I will take a break first though.

    k♡