Hey all! It’s been a while since I’ve posted anything, but as usual, since there is so much experience here among you all, once again, I turn to you for help! 😄
For some reason, I’m unable to update my profile, and a lot has happened since my last update.
To cut it short, I have multiple tumours on both lungs ,significant spread within the peritoneal cavity. A large tumour at the bottom of my bladder, which nearly finished me off just after Christmas. I went into renal failure due to the fact that that the fluid was unable to get past the tumour and I blew up like a balloon with toxic fluid. My electrolytes were totally out of whack and I had my own emergency doctor (complete with full resuscitation kit on his back) chaperone me wherever I needed to go within the hospital, as they were worried that I was going to arrest 🤭
Anyhoo, four weeks in hospital and multiple ops, procedures and drugs later and luckily (I am so, so, so grateful as this could’ve easily gone the other way), they’ve patched me back up and so far, so good.
So, I’ve not had any active treatment since 2015. Because my disease has never responded well to Chemo (I’ve had FolFox, FolFiri plus Cetuximab, radiotherapy etc), and the tumours aren’t growing super fast, my Onco has preferred a watch and wait approach.
Anyway, I had an appointment with him on Tuesday and he has said that although conventional chemotherapy is out of the question as the regular chemos attack the gastrointestinal tract, and my guts can’t take any more abuse, he thinks it would be appropriate to try Lonsurf.
Having no knowledge at all about this treatment, I was wondering if anyone out there was using it and (of course) some positives would be a bonus. The side effects seem minimal compared with the other bunch of nasties, or is that just wishful thinking?
Anyway, thanks in advance for any advice that you may be able to give,
With all the best wishes for your journeys,