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My cancer seems very aggressive

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

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.

stella65
Posts: 150
Joined: Feb 2011

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's picture
JulieL
Posts: 141
Joined: Jan 2012

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's picture
westie66
Posts: 642
Joined: Jun 2010

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
Posts: 147
Joined: Apr 2011

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's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

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
Posts: 92
Joined: May 2011

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's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

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's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

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's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Hi Tina , go onto cancer research website and you will find the trial on there it called sapproc. Hope this helps x

Best Friend
Posts: 222
Joined: May 2011

Well, we all know these chemos stop working. That's what makes cancer the pain in the ass 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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