Just wanting to bring this to the top as I couldn’t find the thread when looking to post about the new Breathrough triple negative research centre the other day.
Since my my first post on this thread I’ve come off taxol…just had 8 weekly doses. Scan showed disease progression in existing tumours in neck and chest, and also a new 4cm tumour in ‘other’ armpit, plus some queriees about ‘inflamation’ at the base of my lungs. Liver OK. Switched to vinorilbine before Xmas and done 3 cycles (Day 1 and Day 8.) Clincially some of my tumours feel softer but not all. Will get a CT scan after one more cycle. Finding chemotherapy exhaustion very hard.
I will probably go back to the Marsden after my scan, because basically I am out of standardd chemotherapy options. A PARP inhibitor trial may be avaialble but I live quite a distance from Marsden and am not convinced that a Phase 1 trial is what i want to do. My best hope is that vinorelbine is doing something and that I might be able to keep returning to it.
Otherwise I shall probably stop treatment and let things take their course…cancer is spreading relatively slowly in my case but it is spreading and causing disruption. Before I went on vinorelbine my back pain from nerve pain from tumours was getting worse and lymphoedema awful…could hardly wear any of my clothes as arm so big…both these better now so it really is choosing betwen the devil and the deep blue sea.
Would love to have conversations with anyone about stopping treatment which is seen as a logical sensible thing to do rather than as ‘giving up’.
Hope to hear from some other metastatic trip negs.
Jane