Topotecan question for first remission

BonnieR
BonnieR Member Posts: 1,526 Member
edited March 2014 in Ovarian Cancer #1
Hi all, I couldn't believe I got a call from the clinic on Friday and they needed another ca125 in a week for me to be in the study so they postponed my chemo. Without asking me! I said take me out of the study. I told her the
fluid in my abdomen is now pushing on my ribs and I am not waiting another week. I get the exact same treatment whether in the study or not as I'm the one in the comparison that isn't getting the new drug with Topotecan. I am all for research but my health comes first.

I couldn't believe they went ahead and cancelled everything without asking me.

Maybe I am being unreasonable but you know what I don't care. As many of you can relate when the ascites starts making you look pregnant and you gain 7 lbs in a week, you start to sense the cancer growing. Or at least I do.

Well now my question. I was told by the Doc origianally I would get topo 2 weeks on 1 week off and now I am only getting it 1 week on 2 weeks on because of the study? He said he
must have said it wrong last time. I hope so as the carbo/taxol treatments didn't seem to give me a very long remission and would like to really Kick Cancers Butt this time.

I am debating on a second opinion. For those of you on topotecan for the first recurrence how long and often are your treatments. I would like to put together some stats before I either talk to my Dr. again or get a second opinion.

Thank you all very much for your help. Take Care & God Bless.

Comments

  • JanQ
    JanQ Member Posts: 236
    #2
    Bonnie, Amen your health comes first and when they start messing around without telling you that is not right. I hate you are going through all of this again, I don't have any answers to your ques just want you to know you are on my mind and in my prayers. God Bless You, Jan
  • gorget
    gorget Member Posts: 23
    #3
    Hi Bonnie,
    I too am unable to answer your questions. My doctors were debating at one time putting me on Topotecan if my OVCA stopped responding to the Carbo/Tax, but thankfully it didn't happen.
    I believe they were talking about the same interval (every 3-4 weeks) and that the side effects would be less harsh (hair and nails would grow back, etc.)
    I know the link on this site regarding the drugs is very good, giving you the information sheets that the docs give you. It may give you some additional info.
    I'm very sorry that you have had a recurrence - it is certainly what I fear most. But we are all here/hear for you.
    Be well,
    Georgette
  • kendysmom
    kendysmom Member Posts: 1
    #4
    Hi this is my first time here so I hope i can help. I get Topotecan (Hycamtin ) once a week for three weeks then the fourth week off. When the cancer came back they started me on Hycamtin on a 21 day schedule three week on one off it was to much then changed to a 20percent decrease it still knocked me for a loop --Had to have blood -shots tested for all kinds of infections ect bowels were a mess ect . it was all because of the chemo. So now like I said once a week for three week then one week off I get a higher dose of chemo but because of the span it isn't as rough. My ca level was 99 went to 66 after 2nd surgery then 54 then 24, last month 28 not to bad don't like it going up even a little . When I was first diagnosed I had carbo and Taxol I was stage 2 relasped within 10 months. My question has any one had this type of schedule for recurrent ovc ?
  • JanQ
    JanQ Member Posts: 236
    #5
    kendysmom said:

    Hi this is my first time here so I hope i can help. I get Topotecan (Hycamtin ) once a week for three weeks then the fourth week off. When the cancer came back they started me on Hycamtin on a 21 day schedule three week on one off it was to much then changed to a 20percent decrease it still knocked me for a loop --Had to have blood -shots tested for all kinds of infections ect bowels were a mess ect . it was all because of the chemo. So now like I said once a week for three week then one week off I get a higher dose of chemo but because of the span it isn't as rough. My ca level was 99 went to 66 after 2nd surgery then 54 then 24, last month 28 not to bad don't like it going up even a little . When I was first diagnosed I had carbo and Taxol I was stage 2 relasped within 10 months. My question has any one had this type of schedule for recurrent ovc ?

    Kendy's Mom,
    I am just going for my first 3 month ck up on Monday the 9th. Was it 10 months from when you were first dx that it came back? Did the cancer spread somewhere else? That is my fear, I can't wait to see the dr on Monday for him to tell me I am fine. I am so sorry you have had a recurrance and so soon, I think that is everyones fear. I really hope these treatments go smoother for you, God Bless You Jan

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