Need some advice on a new trial

Hi everyone - had the results of my scan today, not the best news, the Caelyx is not working and they have stopped it, ascites coming back and tumours got bigger - going on a new trial next week "low dose cyclophosphamide and nintedanib" - will be in tablet form to be taken everyday - does anyone have any experience of this or heard about it all all xx

9 Replies

  • No sorry but really hope it works for you! Xx Lyndall

  • Hi Caelyx didn't work for me either so it was stopped and I was put on 18 cycles of weekly taxol, I am waiting for results now.

    I wish you lots of best wishes for the trial to do its job for you.



  • Hi, yes I have heard of it , it's the METRO-BIBF trial where you get the Cyclophosphamide and its 50/50 decided by computer wether you get the nintedanib. This nintedanib as I understand it works like Avastin, cutting off the blood supply to tumours.

    I was going in to it but failed on half a point with a liver test, so went on to just the low dose Cyclophosphamide. I have had it for two weeks, now I have to have two weeks off whilst they check my bloods, and I hope to go back on it next week.

    I had abit of nausea and fatigue but it passed after a few days.

    Hope this helps, Trix

  • Hi. I am not familiar with replying to posts but have just posted and not sure if I have done what I should. I hope all of you are as well as possible and that many more trials come our way.

  • Hi Trix. I read all of your posts with interest and you have knowledge of many aspects of OVC. I wonder if you could help me with a query. I have stage 4 OVC and finished chemo in Oct 2014. Since then I have been on Letrezole which kept me fairly stable until about 2mths ago. I have never been NED and CA125 has continued to rise though pretty slowly at first but for me there has recently been a fairly big jump.

    I have been offered the chance of 2 trials but have not been eligible for either due I beleive, to the fact that I have not had at the very least, a 3 month free of cancer period where there has been no growth whatsoever. Even when fairly stable my CA 125 has gone up and a tiny tiny minimalistic change has been noted. That's my understanding anyways.

    Have you any knowledge of any trials anywhere where I might be accepted with my history? Do you know where I can find the criteria for the various trials on offer that I can research? I am wondering if there is a specific site where the trials and the criteria for each one is listed. I am more than willing to travel. I Thankyou in advance for any information you or anyone else can give me.


  • I am sorry the Letrezole is no longer working for you. I am here in Ireland and there are trials for Parp Inhibitors but I think ladies in the UK have had better results than we have had here. Hopefully there are some drugs out there for you have your got Gemzar on its own or with Carbo, that is one option

  • Hi, I am no expert, I have just gained info from this site and from my five and a half years of having oc.

    I found out about the trial I just went for by searching on Cancer Research site under clinical trials for ovarian. This will give you details of where it is, who can enter etc, and I am sure there are trials you can go into even if you have progression, as I have and I only just missed out on being accepted . Call Ovacome also, they should be able to tell you about trials. And someone may correct me if I am wrong but I think there are trials at some of the big hospitals that are being run but not sponsored by Cancer Research , so won't be on their site.

    I would ask why you have been excluded from trials, that is important for you to know.

    Hope you find one. Trix

  • Many thanks . I think I have been excluded as the cancer continues to grow albeit very very slowly and therefore have not had any response to ist line chemo. During the time I was on letrozole this pattern continued and on this 2nd trial they had hoped I had had a positive response albeit for the first 3month on the letrozole, when the disease should have been static but this was not the case apparently. . I have not yet spoken with my oncologist yet as only found out I was not eligible yesterday late afternoon and this was told to me by the trial DR who is at a different hospital. I will indeed query my understanding of what I have been told though. Thankyou also for telling me about the cancer research site as I will look at that carefully. Jacqui

  • Many thanks. I just found out not eligible for the 2nd trial yesterday and am waiting an appointment with my oncologist to see what's on offer next. Have not yet been offered any that you mention but will certainly bear them in mind.

    Hope all good with you and Thankyou for your response to my query.

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