hard week of topotecan

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garden gal
garden gal Member Posts: 212 Member
in Ovarian Cancer #1
Just finished my 5th round of topo, 5 days a week every 2 weeks. This was a rough one, had a reaction from the sterods, so they stopped them, left me extremly tired, anyone else on topo?. Have 3 weeks off with the holidays coming YaHooooo. Ca 125 is 306 stopped coming down before this last treament. Dr will do another ca125 before next treament to see where we are. Kathy

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  • LaundryQueen
    LaundryQueen Member Posts: 676
    #2
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    Kathy I've never done
    Kathy: I've never done topotecan. I just want to let you know the there is a phase II clinical trial on the targeted therapy XL186 that is open to people with epithelial cancers who have done topotecan. I posted a new thread about it (Cabozantinib) about a week ago.

    I investigated that drug as much as I could online & it is looking very promising for epithelial ovarian cancer patients. Up to a 50% response rate for disease stabilization or remission. The drug sounds like it is intended to be used as a maintenance med.

    I asked my oncologist how much longer it might take to get that drug on the market & he said at least 3 years more years. There are very few side effects besides nausea--and they lower the dose if nausea is a problem. I read that the lower dose is still very effective.

    I just wanted to let you know another option might be out there for you.
  • garden gal
    garden gal Member Posts: 212 Member
    #3
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    LaundryQueen said:

    Kathy I've never done
    Kathy: I've never done topotecan. I just want to let you know the there is a phase II clinical trial on the targeted therapy XL186 that is open to people with epithelial cancers who have done topotecan. I posted a new thread about it (Cabozantinib) about a week ago.

    I investigated that drug as much as I could online & it is looking very promising for epithelial ovarian cancer patients. Up to a 50% response rate for disease stabilization or remission. The drug sounds like it is intended to be used as a maintenance med.

    I asked my oncologist how much longer it might take to get that drug on the market & he said at least 3 years more years. There are very few side effects besides nausea--and they lower the dose if nausea is a problem. I read that the lower dose is still very effective.

    I just wanted to let you know another option might be out there for you.

    topo
    Thanks for the info.Not elegible for clinical trials right now. Still have wound from surgey that has not completely healed over. Kathy
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #4
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    garden gal said:

    topo
    Thanks for the info.Not elegible for clinical trials right now. Still have wound from surgey that has not completely healed over. Kathy

    Like someone else said, we
    Like someone else said, we just have to stay alive til better treatments are available.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #5
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    LaundryQueen said:

    Like someone else said, we
    Like someone else said, we just have to stay alive til better treatments are available.

    hope you are having a better day
    and was thinking about you. I hate the side effects of chemo..but hopefully it will pass. Rest while you can...val
  • garden gal
    garden gal Member Posts: 212 Member
    #6
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    poopergirl14052 said:

    hope you are having a better day
    and was thinking about you. I hate the side effects of chemo..but hopefully it will pass. Rest while you can...val

    I take it a day a time
    and usually I don't have a problem with the chemo. Feeling better, hope the numbers come down, if not on to the next drug. Topo is my 7th chemo drug and all in all not so bad, count myself lucky for still being here, 2-1/2 yrs now. thanks everyone, saying prays for everyone. Kathy
  • cfont11
    cfont11 Member Posts: 115
    #7
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    garden gal said:

    I take it a day a time
    and usually I don't have a problem with the chemo. Feeling better, hope the numbers come down, if not on to the next drug. Topo is my 7th chemo drug and all in all not so bad, count myself lucky for still being here, 2-1/2 yrs now. thanks everyone, saying prays for everyone. Kathy

    You are an inspiration to
    You are an inspiration to all of us. I am only on my 3rd. drug, Gemzar for a recurrence. I can't believe you are on your 7th. but it just goes to show that you are a fighter. Keep it up. You are in our prayers.

    Chris
  • garden gal
    garden gal Member Posts: 212 Member
    #8
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    cfont11 said:

    You are an inspiration to
    You are an inspiration to all of us. I am only on my 3rd. drug, Gemzar for a recurrence. I can't believe you are on your 7th. but it just goes to show that you are a fighter. Keep it up. You are in our prayers.

    Chris

    Everyone here is my inspiration
    I have learnt so much since I joined. This forum has helped me in so many ways could not list them all. Yes 7 drugs now and was told there are many more I could try. Crossing my fingers and praying one will put back into remission. Thanks Kathy
  • Songflower
    Songflower Member Posts: 608
    #9
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    Topotecan
    I took this drug for recurrent uterine cancer. I never had trouble getting it covered with my insurance. I have USPS. I am from the uterine board so hello!

    I am taking Gemzar now and I like it so much better than topotecan. Topo never worked for me but I've got good results from Gemzar. I wonder what the difference is in getting it covered.

    Hope you don't mind me popping in.

    Your friend,
    Diane
  • garden gal
    garden gal Member Posts: 212 Member
    #10
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    Songflower said:

    Topotecan
    I took this drug for recurrent uterine cancer. I never had trouble getting it covered with my insurance. I have USPS. I am from the uterine board so hello!

    I am taking Gemzar now and I like it so much better than topotecan. Topo never worked for me but I've got good results from Gemzar. I wonder what the difference is in getting it covered.

    Hope you don't mind me popping in.

    Your friend,
    Diane

    topotecan

    Don't know what the difference is in getting it covered. I too was on gemzar with no luck, had to stop and go onto another drug numbers kept going up on gemzar. Pop in anytime. Maybe someone else on this board can answer your question. Hope all is going well for you. Kathy
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #11
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    Topotecan too
    I'm on Topo as well and I am having great results from it. My numbers have come down from 1,727 to 991 to 327 after only 3 cycles.

    I do find I am a little nauseous but I am on a variety of anti-sick meds which keep it in line. I am currently just coming to the end of my 4th round and am feeling OK today.

    How are your numbers Kathy?

    This is my 3rd chemo, I did carbo/taxol twice which worked both times.

    Tina xx
  • garden gal
    garden gal Member Posts: 212 Member
    #12
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    Tina Brown said:

    Topotecan too
    I'm on Topo as well and I am having great results from it. My numbers have come down from 1,727 to 991 to 327 after only 3 cycles.

    I do find I am a little nauseous but I am on a variety of anti-sick meds which keep it in line. I am currently just coming to the end of my 4th round and am feeling OK today.

    How are your numbers Kathy?

    This is my 3rd chemo, I did carbo/taxol twice which worked both times.

    Tina xx

    Started with 320
    3rd treatment 304, 4th treatment 306. Will be starting my 6th treatment in Dec, but the dr will do another ca125 before to see where we are at. If the numbers go up or stay the same will probably go onto another drug, not quite sure at this point, talked about a lot of options if that happens. I started with carbo/taxol, then doxil,gemzar,carbo alone, taxol alone,topotecan. Went into remission with carbo/taxol for 8 months.Numbers climbed with doxil and gemzar,up 3,085, carbo brought them down in 1 treatment to 109 but I had a severe reaction so they had to stop using it, when they told me the numbers on this drug I didn't believe them actually asked for them to do it over and they did, the numbers were correct.Went onto taxol numbers climbed again to over 900 onto topotecan, numbers came down but just maybe this drug has now stopped working. With all the drugs I've been on nausea was never a problem but just this week a couple of times I did get sick, something new for me, I have been very lucky. Glad to hear that your numbers are coming down, its so great when they tell you that. My journey has been over 2-1/2 years now, stage 3c. Let me know how you do and I pray that you go into remission. Kathy
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #13
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    garden gal said:

    Started with 320
    3rd treatment 304, 4th treatment 306. Will be starting my 6th treatment in Dec, but the dr will do another ca125 before to see where we are at. If the numbers go up or stay the same will probably go onto another drug, not quite sure at this point, talked about a lot of options if that happens. I started with carbo/taxol, then doxil,gemzar,carbo alone, taxol alone,topotecan. Went into remission with carbo/taxol for 8 months.Numbers climbed with doxil and gemzar,up 3,085, carbo brought them down in 1 treatment to 109 but I had a severe reaction so they had to stop using it, when they told me the numbers on this drug I didn't believe them actually asked for them to do it over and they did, the numbers were correct.Went onto taxol numbers climbed again to over 900 onto topotecan, numbers came down but just maybe this drug has now stopped working. With all the drugs I've been on nausea was never a problem but just this week a couple of times I did get sick, something new for me, I have been very lucky. Glad to hear that your numbers are coming down, its so great when they tell you that. My journey has been over 2-1/2 years now, stage 3c. Let me know how you do and I pray that you go into remission. Kathy

    Hi Kathy
    My journey has been going on for 2 years now. I actually have PPC but I often stop by the Ovarian boards as the ladies on here gave me such a lot of support when I was first diagnosed.

    The lowest my numbers have ever been was 34 on carbo/taxol but after 3 months they climbed to 71 and on and on. My numbers are a real roller coaster as they go up quickly but come down just as quickly on chemo. Not really sure if that is good or bad?

    Wow you have tried lots of chemo's, I've heard that Gemzar is really effective, did you find that? I tried doxil last year and I became ill and got admitted into hospital, so that one is out for me in the future.

    Just finished my 4th round and get my numbers in 2 weeks, so I will let you know.

    Love Tina xx
  • kayandok
    kayandok Member Posts: 1,202 Member
    #14
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    topo
    I did irinitecan, which is supposidly the same thing as topo. I can't remember how many rounds I did, but my numbers never came down, only climbed slowly. Sure enough when I had the chemo assay after my last sugery, topo was not an effective chemo. I am not on carbo/gemzar. It seems to be working so far.
    Hugs,
    kathleen
  • garden gal
    garden gal Member Posts: 212 Member
    #15
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    Tina Brown said:

    Hi Kathy
    My journey has been going on for 2 years now. I actually have PPC but I often stop by the Ovarian boards as the ladies on here gave me such a lot of support when I was first diagnosed.

    The lowest my numbers have ever been was 34 on carbo/taxol but after 3 months they climbed to 71 and on and on. My numbers are a real roller coaster as they go up quickly but come down just as quickly on chemo. Not really sure if that is good or bad?

    Wow you have tried lots of chemo's, I've heard that Gemzar is really effective, did you find that? I tried doxil last year and I became ill and got admitted into hospital, so that one is out for me in the future.

    Just finished my 4th round and get my numbers in 2 weeks, so I will let you know.

    Love Tina xx

    Hi Tina
    My lowest number was 5.5 after 6 rounds of carbo/taxol. don't I wish I could see that again. My numbers do the same as yours, they go up quickly but come down just as fast. I was wondering if thats a good thing too. Dr says I react real fast to drugs in the large picture of things she says its a good thing. We tried gemzar but after 4 rounds number were going up to fast, I was told for doxil to work you need a least 4 rounds and that they would go up before they started to come down,only had 2 rounds but along with numbers going up I was alergic to the drug burnt over 50% of my body. Not a fun thing to go through in fact thats how I spent my thanksgiving last year, laying on sheets with pain and sterods, a cream that was suppose to help with burn and pulling on skin. Sorry I'm complaining. Feeling good right now so thats all that matters. I really believe your numbers will be great. Let me know what your numbers are next time. Kathy
  • garden gal
    garden gal Member Posts: 212 Member
    #16
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    kayandok said:

    topo
    I did irinitecan, which is supposidly the same thing as topo. I can't remember how many rounds I did, but my numbers never came down, only climbed slowly. Sure enough when I had the chemo assay after my last sugery, topo was not an effective chemo. I am not on carbo/gemzar. It seems to be working so far.
    Hugs,
    kathleen

    topo
    Numbers on topo were starting to come down slowly, but the last ca showed they went up by 2 points, which I was told they take that as they stayed the same. Not sure about that, something tells me the next ca will have high numbers that seems to be what happens to me with all the other drugs. But for now I feel good no pain except for my lower back which I've always had to deal with. I do know someone on carb/gemzar and they went into remission for the second time with that combo. Good luck, lots of prays for everyone. Kathy
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #17
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    garden gal said:

    topo
    Numbers on topo were starting to come down slowly, but the last ca showed they went up by 2 points, which I was told they take that as they stayed the same. Not sure about that, something tells me the next ca will have high numbers that seems to be what happens to me with all the other drugs. But for now I feel good no pain except for my lower back which I've always had to deal with. I do know someone on carb/gemzar and they went into remission for the second time with that combo. Good luck, lots of prays for everyone. Kathy

    Hi Kathy
    You mentioned lower back pain. I get that sometimes. Its like regular spams that may last most of a day and then when I get up the following morning they are all gone - weird.

    No pain is good though :)

    Pleased your numbers are coming down :)

    Tina xx

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