trail and treatment

Hi Everyone,

I would like to know if anyone has been on Topotecan, what side effects and how long were you progression free for? also has any one done the trail Saracatinib, how well did you cope with the side effects? has I'm thinking of going on it with Paclitaxel. any help would be very much appreciated, it will be for my second line treatment.


5 Replies

  • Hi Sarah

    I don't know anything about this trial. But hopefully your oncologist has told you what phase it is, what previous results have shown etc. My experience is that these trial drugs are only available for a limited time and so you might not have the option of having Saracatinib if you decide to go for Topetecan first.

    Whereas Topetecan will probably available after Saracatinib IF you need it.

    I had Topetecan - it worked to an extent for the first half of the course but not during the last few cycles. I personally found it difficult having it once a week - not necessarily because of the side effects (just sickness I think) but more because I was just weary of intravenous chemo full stop. You may respond much better than me so PLEASE don't put too store into what I have experienced. My trial drug has been a real success for me so I may be biased. Its down to you I'm afraid but make sure you know as much as you can about the trial.

    Let us know what you decide.

    Love Sarah

  • Hi Sarah,

    I agree with Sarah above, having had no trials to talk about, but they do go quickly, so if you have been offered one, and are able to take it now, it would probably be best. I also agree with sarah's problems with topetecan, it worked well to start with, but by the end of the six sessions it wasn't working. It was very hard having so many sessions, especially as I was travelling 25 miles each way every day!

    good luck


  • Hi Greybadger and Sarah

    Thank you for sharing your experience of Topetecan. I have been offered this as the nex line of treatment having had 2 cycles of chemo in the last two years. I had a reasonable remission after the first cycle (taxol) but only a couple of months after the last (caelyx). I have had carboplatin in the past and am now allergic to it. I get the feeling that the weekly hospital visits and intraveneous therapy takes over you life and you need to be pretty confident that it will do some good. So I think i have opted to leave well alone - go for quality not quantity. But I can change my mind any time and if I do find any encouraging reports i may do so.

    all th best


  • Hi Sarah

    you will see from my reply to Greybadger and Sarah above that i have been choosing between Topetecan treatment and doing nothing but I haven't come across much evidence from people who have tried it. I did enquire about a trial but apparently there isn't one appropraite for my situation at the moment. If there was i would participate i only because I think that we need the trials to find effcetive drugs for the future.

    Good luck - whatever decision you make.


  • Hi Sarah,

    The trial you are referring to is the SAPPROC trial and is being conducted by Professor Iain McNeish who I went to see for a second opinion a few weeks back. I know Carrie is on the trial and I was hoping she may be able to tell you what it is doing for her. I was told you can either just have weekly taxol as the control group OR if you want to participate you may get the drug or you may get a placebo - you will not know which. I must admit given the choice you have, I would go for the trial as long as there is a convenient place for you to participate. I know they are hoping to roll the trial out to more places later this year in the next phase (current phase finishes recruiting on 1/4/2012). Apparently weekly taxol is now fairly standard second line treatment in place of caeylx but topetecan is standard 3rd line treatment. As the other say, it will be still be there if you decide you need it after the trial. For me it would be a no brainer - go for the trial.

    Love Lizzie


You may also like...