My cancer seems very aggressive

Tina Brown
Tina Brown Member Posts: 1,036 Member
in Peritoneal Cancer #1
Had my appointment today for CA125 and scan results. Not good. CA125 is up from 485 to 1,305 and scan shows disease progression. My oncologist began by telling me it was not good news. Only finished Topotecan 6 weeks ago so this is quite a blow. My onc has put me on an oral chemo called Leukeran (Chlorambucil). Has anyone ever heard of it? Has anyone ever been on it? I am kind of scared as this disease seems to be taking over my life I am powerless to do anything about it.

Comments

  • stella65
    stella65 Member Posts: 152
    #2
    Damn!!
    Believe me I wanted to use a much stronger word! This damn thing makes me so angry, I was hoping for much better news for you Tina. I am sorry I don't know anything about the oral drug you are going to have but I just hope that it helps you. Much love to you, keep fighting the fight X
  • JulieL
    JulieL Member Posts: 141
    #3
    Hi Tina
    Sorry I don't know
    Hi Tina
    Sorry I don't know Leukeran but wish with all my heart that it helps you. Love and best wishes and sending prayers and positive thoughts to you.

    Julie
  • westie66
    westie66 Member Posts: 642
    #4
    JulieL said:

    Hi Tina
    Sorry I don't know
    Hi Tina
    Sorry I don't know Leukeran but wish with all my heart that it helps you. Love and best wishes and sending prayers and positive thoughts to you.

    Julie

    Tina
    HiTina: I am so sorry. That's kind of how I feel - don't know how to fight this thing and there doesn't seem to be much research out there to help (mine is secondary peritoneal cancer). Also have a spot on the liver. I haven't heard of leukeran either but hope it works for you as you have been a brick on this website discussion board. I'm filling myself with supplements at the moment - not sure any of them work but have to do something!
    Cheryl
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #5
    Taking over..
    Tina...
    Have been happy for you. You look fantastic which is really heartening. This seems like a real setback for you though and I can quite understand how you feel. I too feel helpless in the face of it and sometimes I feel overwhelmed by it. I'll be thinking about you and hoping that your count goes down again soon... :)
  • MarisaUK54
    MarisaUK54 Member Posts: 41
    #6
    Thinking of you..
    Tina,

    Just read your post and for what it's worth, want to let you know that I'm thinking about you and feel for you so. I had my 3 month check up on Thursday too, I need to have my thyroid function checked and my CA125 was up.

    Sadly, I'm not able to answer your questions but hopefully someone on here will be more knowledgeable and offer advice.

    Take good care xxx
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #7
    Keep on track
    Hi Tina,
    what a setback. But living with this disease we both know that setbacks will come. But with this said, its not the end. I really hope to oral drug will do it for you. The progression might be on Topotecan but there are more alternatives. Dont give up, you are such a good fighter and an inspiration to us all. You may have many years ahead and I believe you do. If you can find the strenght to go through all treatment and I believe you can. Thinking of you,
    Sophie
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
    SOPHIE333 said:

    Keep on track
    Hi Tina,
    what a setback. But living with this disease we both know that setbacks will come. But with this said, its not the end. I really hope to oral drug will do it for you. The progression might be on Topotecan but there are more alternatives. Dont give up, you are such a good fighter and an inspiration to us all. You may have many years ahead and I believe you do. If you can find the strenght to go through all treatment and I believe you can. Thinking of you,
    Sophie

    Thank you all so much
    I have just read through all of your posts and I actually feel so much better. You have given me the hope that my doctor DID NOT.

    Together we are strong.

    I am being referred to the Royal Marsden in London for a second opinion and will hopefully get some hope as well.

    Tinaxxxx
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #9
    Tina Brown said:

    Thank you all so much
    I have just read through all of your posts and I actually feel so much better. You have given me the hope that my doctor DID NOT.

    Together we are strong.

    I am being referred to the Royal Marsden in London for a second opinion and will hopefully get some hope as well.

    Tinaxxxx

    Hi tina
    I am so sorry to read this, ggggrrrrrrrrrr
    Have you looked at any trials? There was a trial called sopproc that mum was going to do.maybe you should have a look. It was based in Cambridge , which I know would be a bit of a hike for you ( your Newcastle?)
    I haven't heard of the oral chemo , it was never mentioned to us. I hope it holds the beast at bay.
    There is a website just google controlled trials and it should take you there.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #10
    Mum2bellaandwilliam said:

    Hi tina
    I am so sorry to read this, ggggrrrrrrrrrr
    Have you looked at any trials? There was a trial called sopproc that mum was going to do.maybe you should have a look. It was based in Cambridge , which I know would be a bit of a hike for you ( your Newcastle?)
    I haven't heard of the oral chemo , it was never mentioned to us. I hope it holds the beast at bay.
    There is a website just google controlled trials and it should take you there.

    Hi Tina , go onto cancer
    Hi Tina , go onto cancer research website and you will find the trial on there it called sapproc. Hope this helps x
  • Best Friend
    Best Friend Member Posts: 222
    #11
    Tina Brown said:

    Thank you all so much
    I have just read through all of your posts and I actually feel so much better. You have given me the hope that my doctor DID NOT.

    Together we are strong.

    I am being referred to the Royal Marsden in London for a second opinion and will hopefully get some hope as well.

    Tinaxxxx

    Rubbish!
    Well, we all know these chemos stop working. That's what makes cancer the pain in the **** it is. This treatment could just have stopped being the right one for you. I know alot of people on at home oral chemo. I think it will be good for you till you find ur next move. What about trying the taxol again. I know if my mom woulda went to u of Penn for her treatment they would have automatically offered her a study. There are so many of em. I know it's like hoping for a miracle, but honestly, look at what u have been through. Anything they are working on nowadays could be the next big breakthrough. Everyone on here told me its a rollercoaster. You were doing well and u will again. I just know it.

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