Hi
I have TN that has spread to my lymph nodes stage 4.
I am now on a trial drug which they tell me I will be on continually, every 3 weeks, for the foreseeable future. Is anyone else on here on chemo that they have to stay on indefinitely?
Thanks
G
Hi G
I’ve been on my first line treatment for almost 2 years. Two weeks oral chemo at home (capecitabine), one week off, never ending. I have been awarded three single weeks off, twice when I was just too damned exhausted to get on with it and once by choice, but my oncologist did say once that he wouldn’t want me to be off chemo for more than a week. I assume it’s because of the aggressive nature of TN cells?
To answer your question, I believe that, unlike adjuvant chemo, almost all treatments for Stage 4 TNBC are for as long as they work. Unfortunately this means an almost permanent cycle of side effects - but what is the alternative?
How exciting (and scary?) to be on a trial. You know you’ll get close attention, that’s for sure. Which drug is it please? I’m holding my breath for Enhertu, which might suit me better than Trodelvy, but NICE is never in a hurry (as though cancer will wait) and often makes the wrong decision.
I do hope your next scan shows excellent results. Fingers crossed,
Jan x
Hi G,
It is unfortunate that no chemo as yet cures secondary disease so continuous chemo is the only option to staying alive. Of course a cure is the holy grail, but a chemo that has less in the way of side effects would also be a huge boon. I’m now on my fourth option and have suffered fairly debilitating side effects from all of them.
What is the trial you are on? There seem to be a number about but each tumour has to be tested for a variety of proteins before you get on them. It’s disappointing to hear of something and get tested only to find you’re not suitable.
Good luck with this one and let us know how you get on with it. Hopefully there’ll be some shrinkage.
Lancashire Lass 