Secondary TNBC trials

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Hi all, I was diagnosed just before Christmas with invasive ductal BC. Ater many tests and scans if was found to have quickly spread to my lungs. My treatment options are now much more limited.

I have been offered a  place on a trial that I have been told has been pretty successful for many patients. All of the side effects seem pretty similar to standard treatment.

Has anyone else taken part in a trial & how did you get on with it?

Look forward to hearing from anyone 

  • Hi  

    I haven't been on a trial but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    All the best with whatever you decide to do.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi Bsnow,

    How did you get on a trial?  I've got my first appt with my onc on Monday after being diagnosed with stage 4 TNBC.  Good luck with your trial

  • Hi flamingo_flyer, 

    Sorry to hear about your diagnosis. Have you completed all of the tests now? It's seems such a long slog before actually get a treatment plan. Hopefully you're almost there.

    I got a call yesterday to say my PD-l1 results came back positive, so I Have a place on the trial Blush. I feel very lucky and privileged for the opportunity. Although It's not a cure I'm hoping it will give me more time.

    I'm just waiting for my start date.

    Wishing you all the best with your appointment on Monday.

  • How are you doing ? Have you started the trial ? What drugs do they give ? 
    I am waiting for pd-l1 results hoping to start treatment soon

  • Hi Caroline, I had my first treatment last Thursday. It wasn't to bad, but I did get a bit of a skin infection and felt quite poorly by the Saturday. Not sure if it was the chemo/immuno or the infection that made me feel rough. Felt much better after a good dose of antibiotics.

    I'm having Duvalumab & datopotamab durextecan.

    It's a little to early to say how it's going, but I'm feeling positive today x

  • Thank you - good to hear you have started and that the antibiotics help. 
    a positive day is so good to have. 

    I hope to get my results soon so I can start on treatment- different from your trial. Fingers crossed. 

  • It's the one test that you want to come back positive.

    Keeping everything crossed for you Fingers crossedHeart exclamation

  • I have been offered the chance to join a trial that includes these drugs. How are you finding it?

  • Hello. I've been on a trial for 19 months. I'm not on the same drugs as you but I just wanted to reply about trials in general to you and everyone who is starting one. Bear with it if you can. You may get side effects initially while your body adjusts but they should settle. They might be able to adjust the dosage if they don't. You are likely to have regular clinic appointments where you'll be thoroughly checked. Mine are every 4 weeks. Also regular scans. Mine are every 3 months and I have a bone scan every 6 months. There's no worrying about getting appointments, scans or blood tests, that all gets arranged for you. Travel expenses are also paid. The frequency of appointments can be a bit of a pain after a while. But I know if there's the slightest change it's going to get picked up and investigated further. Personally I find it very reassuring being on a trial.  Good luck x

  • Hi Jocasta, I'm only on round 2, but so far I'm finding it okay.

    I did get the skin infection with the first round, but I think that might have been a coincidence & nothing to do with the treatment.

    I am on day 2 after treatment now, and nothing to drastic. I woke up with a bit of a headache & feeling a bit sick, but have taken some meds & it's subsiding.

    I've heard nothing but positive things about this trail, so I have nothing to lose by having it as a first line. It seems less harsh on your body than standard treatments, but it's still early days and I can only gauge this by what others have said about standard treatment.

    Where are you going to be having your treatment?

    Fingers crossedit will be right for you & we both have positive results xx