Thanks for your welcoming comments :-) Today is day 10 after my 1st cycle of Trabectedin it is given over a 24 hour period and I carry like a little baby bottle with me during this time. Effect as per the other two times I had chemo during my previous local recurrences this has a milder hangover feeling for about 3-4 day although I do feel a bit more tired although might be the steroid based anti-sickness that makes me more wrestless at night.
Other than that no significant effect and following the usual care during the downturn of the immune system of using anti bacterial toothpaste wipes mouth wash etc.
One other thing was slight blurring of one eye and saw an opthalmologist it seems i have a bit of fluid in the layers of the retina now this normaly is stress related but the Hospital is also in contact with the drug manufacturer as this is not a listed as a side effect but they thought they'd advise anyway.
In the meantime my imaging has been sent to the same surgeon that operated on me last year in May to look in on surgical options available.
Hope the treatment continues to go smoothly. Where are you being treated? My wife is scheduled to begin Trabectedin shortly in New Jersey, and it’s encouraging to read that the side effects have been relatively mild for you. Best of luck.
I'm being treated on the Oncology side in the Royal Marsden Hospital (RMH) in London by Professor Ian Judson and his team on all my three recurrences. On the Surgical side my first procedeure was at the RMH removal of a 5 kilo sarcoma after which I had a course of 6 x 72 hour sessions of Ifosfamide and Doxrubicin, second round at the Uppsala University Hospital in Sweden by Professor Göran Åkerström2 x 1 kilo tumors and had 3 x 72 hour sessions before the operation and 3 after the operation. My third recurrence is an 11cm x 10cm tumor as advised have started Trabectedin on a 24hour carry with you bottle basis and would compare it as milder than the other chemos i've tried more like a mild hangover for 3-4 days obviously without enjoying the alcohol :-) Importantly reading about the mouth ulcers I have religiously used an antibacterial mouthwash called Corsodyl alternating during the day with antibacterial toothpaste at regular intervals and definitely after meals and touchwood no mouth ulcers yet. Also use ususal disinfectants and hand wash stuff regularly as I do insist on those around me using these as well. Oh and plenty of immune system building food stuffs very important.
I was on that trial as well. I did have a few strange side effects, but it beat the chemo, that is for sure. Good Luck! I think this drug was developed from a sea squirt in the carribean... to bad we just couldn't go to the beach for treatment -- lol