Nintedanib trial

This is not an easy post to write but here goes: I am 10 weeks past last of frontline carbo/taxyl after optimium debulking in December. I have clear cell stage 3C. My scan results showed 2 "suspicious" things in tne abdomen and 2 on the liver. This means that the chemo has done nothing. The onc thinks that I will fit the Niccc trial at Taunton which is comparing Nintedanib with chemotherapy. I would have either Caelex or the Nintedaneb. I am worried that the pulmonary embolism that I had after surgery will make me ineligible. Has anyone been on this trial please. I suspected it was back but it is not a good day.

22 Replies

  • Oh so sorry to hear that....what a bugger this disease has proved to be! Don't know about the trial..perhaps someone else will know? Just wanted to send you a hug xx

  • Thank you-I do need one!

  • I'm afraid I also know nothing about your trial but can imagine how you are feeling. So another hug your way.

    Shona x

  • Thank you.

  • Hi Neona,

    I'm so sorry to hear that it is back 🙁

    I've just looked up the trial and found the page on CRUK. It makes reference to having had a clot on the lung or leg being a concern for the trial, but that you may still be able to enter. If your onc thinks it might suit you, then hopefully you'd be OK.

    Here's the link to the overview:

    Vicki x

  • Many thanks for this. I'm guessing that I would have to go back on the dalteparin injections -maybe for a long time.

  • So sorry for your news - I hope that the trial is suitable for you and that you can start soon. Sending hugs and support x x

  • Thank you.

  • Hi Neona

    Can imagine how you are feeling , so so hate this disease . Sorry don't know about the trial but it may be worth you speaking to the Ovacome support line about your options.

    Sending lots of positive vibes and a big hug . Hang on in there . You will feel stronger once you have a plan of action in place .

    Love and best wishes Kim x

  • Thank you-it is very daunting.

  • Sorry, I can't advise on Nintedanib as I know nothing about it. Just want to sympathise with you and send love and a big (((((hug))))) . Hope whatever treatment comes next it helps you. Solange😊💐

  • Thank you.

  • Hi Neona

    I started this trial 2 weeks ago but was randomised to Caelyx. I was given a lot of information before I started so I will have a look through it to see if embolism are mentioned. Have you got another appointment to discuss with a trials nurse?

    Ann xx

  • Hi Ann, I'm sorry that you need to be on this trial but very glad to find someone else. I had my bad news of recurrence 2 days ago and see the onc again in 4 weeks. Meanwhile they are having meeting to discuss my scan with my original surgeon and others I think. The cns said she would phone me if anything significant happened. They have been trying to set up the trial at Truro but it is taking a long time so I will have to go to Taunton if I get on it. What hospital are you going to? Thanks so much for your reply, Wendy

    ps was told I would have caelyx or the nintedaneb. If I get the caelyx is there any point in me taking part as I can get caelyx in Truro?

  • Hi Wendy

    I have had a look through my literature and it doesn't say anything directly about a pulmonary embolism. There is a lot maybe able to have it as someone else pointed out.

    I saw the trials nurse the week after my consultant suggested the trial. It was an agonising week but the nurse explained everything and I signed up. I was advised it would take about 4 weeks to begin trial which at the time I thought was reasonable as my Oncologist had confirmed only slight progression. There are lots of blood tests and I had to be 're scanned as it needs to be within one month of the trial. You don't actually get randomised until a few days before the start. I felt like you then what is the point of continuing with the trial on caelyx at a different hospital. However once on the trial you are monitored very closely with 8 week scans and bloods for all sorts so I think any problems will be picked up far sooner. I go to Clatterbridge hospital near Liverpool and although it isn't too far away I can't have the treatment or bloods tests at my local hospital. I am only expecting to go in once every 4 weeks for treatment and bloods and if you got on the nintedanib tablets it may be less.

    It is a worrying anxious time and I hope you aren't kept waiting too long. Let me know how you get on

    Ann xx

  • ooh thank you for this. I do hate blood tests! I have to wait 4 weeks before I even see my onc again which is pretty worrying. It will be about 2 1/2 hours to Taunton but I don't see that I have a choice-it would be madness not to try for this. Wishing you the best with yours and will keep in touch.

  • Definitely worth a try. I can't find anyone else on this trial either. Keep me posted xx

  • Hi Neona, I'm in the states and do not know about that trial but just wanted to say I had two PEs during Frontline and was put on "the gold standard" blood thinner shots but got so tired of doing that twice a day one of my doctors (hematologist) told me I could go on a pill twice a day and it is so much better (I was black and blue everywhere I gave myself a shot--not a pretty sight). Anyway--if you have to go back on something, ask about a pill vs a shot. I am on (tradename- Eliquis (Apixaban) and hoping that could work for you too if you have it there and Sloan Kettering is fine with it. I know some trials say as long as you are PE free, you can be in them, but others won't allow it. Fingers crossed for you!

  • Ooh thank you -I will definately ask. Onc wouldn't let me have the pills when I was on frontline carbo-taxyl because he said they interfered with the chemo and I had to inject until 2 weeks after chemo ended. However I knownthat the PE has gone now so definately worth asking.

  • Don't know about this particular trial but just another hug from a fellow clear (cell) teal sister. I also had an embolism years ago and was also on daily levonox shots following my debulking surgery and would echo someone else's post that if you could do an anti-clotting pill that would be so much easier then those shots. I seriously could not do them myself both physically and emotionally and needed to hire a nurse and pay out of pocket to administer them. Expensive. Best of luck with the trial.

  • Thank you-I don't know how long it will be to find out if I am accepted but see Onc in 4 weeks time.

  • Have not heard of this trial but completely empathise with the uncertainty of next steps in treatment. I have just finished 2nd line chemo & about to embark on something i have never heard of ... wishing you very well with your treatment, hope and faith x

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