Diagnosed in Dec 16 with sweat gland cancer on scalp with mets to neck nodes and lungs.
Had surgery and skin graft to remove tumour from scalp followed by neck dissection and adjuvant radiotherapy. Now on watch and wait with scans every 3 months.
May 17 - scan shows minimal change to lungs. No further treatment for now.
Aug 17 - little to no change so keep going and scan again in Nov!
Mar 18 - a lot has happened since my last update. Tumour testing at the royal marsden revealed an HRas mutation which made me eligible for clinical trials. I started in jan 18, the timing of which was fortuitous as my screening scan revealed a new lesion in my spine.
First scan after 2 cycles of treatment showed improvement in both lung and spine so I continue with the treatment.
June 18 - now completed 6 cycles and scans show everything stable. Largest measurable tumour has shrunk 58% since starting in Jan!
Sept 18 - cancer still under control. Have given up work for a while and enjoying some time at home
Oct 19 - so over a year since my last update here. I'm still here, still on the same trial and still doing incredibly well. Back at work and enjoying life!
June 21 - So quite a lot has changed since last time. Unfortunately due to progression in my spine I had to stop the trial in June 2020. Had some RT on the troublesome vertebrae which seems to have put it into check but nodules on lungs continue to grow.
Currently trying pembrolizumab to see if that will help. Scan after first three cycles showed no response but consultant keen to try some more as its too early to make a call. Keeping fingers crossed. Not massively hopeful but at least it feels like I'm doing something.
Sep 21 - So Pembro did nothing so on to chemo for the first time - carbotaxol. Three cycles in and it seems to be working! So far so good...
