My ca 125 numbers are going up while on topo

garden gal
garden gal Member Posts: 212 Member
in Ovarian Cancer #1
I'm on my 7th treament of topotecan and while in the beginning they went down very slow from 320 to 316, they now have climbed to 464. Dr will do another ca125 in a couple of weeks and discus another option for me. I have been on chemo 18 months straight without a break. This is my first recurence and have been on numerous drugs to get to remission and still it hasn't happened. Any thoughts out there. Feeling fine no pain and have tolerated all the drugs quite well except for carbo, bad reaction (8th treatment) so thats not an option. Getting a little fustrated which I'm sure a lot of my teal sisters have been too with this disease. Kathy

Comments

  • LaundryQueen
    LaundryQueen Member Posts: 676
    #2
    Look for a clinical trial
    Look for a clinical trial for solid tumors. I read your profile & it sounds like you would qualify for one using a targeted therapy called VB 111 with Avastin.

    This a Phase I trial for people with any kind of solid tumor who have run out of options but I don't know if you are at that place. I would love to get into this trial but I haven't failed on enough treatments yet. I suppose you haven't tried Sutent yet.

    Do you know what the pathology of your cancer is? Most stage III ovarian cancers are serous but some are clear cell or other kinds.

    I don't know why you haven't been offered Avastin as I think you should have by now. Like you, I've been told I'm incurable. I'm hoping to stay alive til a targeted therapy is approved which will stabilize the disease.
  • karen1951
    karen1951 Member Posts: 103
    #3
    hi kathy....keep us posted
    hi kathy....keep us posted on how the topotecan is working. i was dx stage IV in aug 2010..my remission after carbo/taxol lasted 10 months....i finished i round of topotecan just before new years and start another 3 week round on friday. my last ca125 was 490 (was only 460 when i was diagnosed) i feel like the topotecan isn't working....i am out of breath and my heart keeps pounding plus i'm hearing a crackling sound in my left lung ... same sound as when i had 2 ltrs of fluid in there. how long do you have to take the topotecan before they determine it's not working? im scared because i don't want to get any worse before they realize i should try another drug. good luck to you....karen
  • garden gal
    garden gal Member Posts: 212 Member
    #4
    karen1951 said:

    hi kathy....keep us posted
    hi kathy....keep us posted on how the topotecan is working. i was dx stage IV in aug 2010..my remission after carbo/taxol lasted 10 months....i finished i round of topotecan just before new years and start another 3 week round on friday. my last ca125 was 490 (was only 460 when i was diagnosed) i feel like the topotecan isn't working....i am out of breath and my heart keeps pounding plus i'm hearing a crackling sound in my left lung ... same sound as when i had 2 ltrs of fluid in there. how long do you have to take the topotecan before they determine it's not working? im scared because i don't want to get any worse before they realize i should try another drug. good luck to you....karen

    I'v had 7 treatments of topo
    and they are now going to stop. I will hear today what my next option is. I was told by a couple of the infusion room nurses that topo is different for a lot of people, for me my numbers only came down a little, for others a lot more. Have not heard of anyone yet to go into remission while on topo, only that it can keep numbers low for you. right now my number is 464 and don't want them to go any higher. I don't have any tumors right now but lymps are showing up so was told avastan was and still is not an option. I too have had problems breathing it comes and goes. The past 3 treatments showed my numbers going up, Dr wanted to see if they would level off and possible start to go down. this has not happened and I don't want to see them go any higher. Last January my numbers were over 3,000 and they told me if I didn't get that number down they only gave me 6 months to live, so as you can see I've come a long way and don't want to see that number again if I can help it. It took a lot of diffrent drugs to get this low although it went to 109 after they put me back on taxol, but shortly after getting that number they started to climb again. Seems like this is what I do, try a new drug do good for awhile then the numbers start to climb again. Not eligible for any clinical trials due too an open incission right now. I would have a good talk with your Dr about all your concerns. I'm now a point in my treatment that if they cannot present a good option for treatment I will discuss other options listen to the the Dr's and take it from there. Will keep you updated might know more today. Kathy Thanks everyone
  • cfont11
    cfont11 Member Posts: 115
    #5
    I am getting my third
    I am getting my third treatment of topotecan on Thurs. I will have 3 more treatments and then a CT scan to see how things are going. My CA125 went down a little from Oct. but I have a small place on my right side that grew a little. Because of this, the dr. changed me from Gemzar to Topotecan. I am hoping the Topo will do some good. I had a very bad allergic reaction to it after my first treatment. From what I have read on this board, Topotecan does not sound like it has helped a lot of people. Let's hope there is something better out there soon!

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