Hello, I have just recently come acrosd this thread. My mother had stage 4 bowel cancer and a BRAF gene mutation which meant that her cancer didn't respond to standard chemo.    My experience with my mum taking Lonsurf is purely negative. My mum was off all active cancer treatment for 1 month prior to starting Lonsurf. She looked great, was walking around well (assisted by a walker in big crowds/long distances) out and about frequently with friends or the movies and she and my Dad had just come back from a weeks break in Qld.    My mum took Lonsurf (2 weeks on) and the 3rd week (first week break) my Dad said she was extremely fatigued and required oxygen all the time. 27th July 2021 she was taken to A&E due to breathlessness and here she was diagnosed with blood clots on her lungs - a serious side effect of Lonsurf.    My mum had a history of thrombosis and had been on blood thinners for years (pre-cancer) her oncologist took her off blood thinners when she was on her targeted therapy as a side effect was eccessive bleeding, but never put her back on blood thinners (could the clots therefore have been avoided??)     I started doing my research on Lonsurf and in a clinical trial 88% of patients who went on this drug for the treatment of metaststic colotectal cancer had a worsening of their disease and death. It has a 12% efficacy rate and from what I have read oncologists should not be prescribing this to patients whose cancer is so far spread that treatment really is not going to achieve anything.  This drug has so many negative reviews and forums on the nasty side effects it is alarming.   What angered me the most was my mums oncologist never gave her the ability for informed consent as when she suggested this drug to my mum she only said 'it will give you nasty side effects' no specifics and when my mum ended up bed bound 24/7 from Lonsurf and spent 7 weeks in hospital I asked the oncologist some questions around this drug and about my mums rapid deterioration physically from this drug and the oncologist looked me in the eye and said 'your mother was only on it for 2 weeks and that was clearly enough, it was going to be futile'    This death along with some very frightening behaviour I witnessed in the palliative care ward accelerated my mothers death.    From what I have seen/read about Lonsurf I would be making sure if your oncologist prescribes it that you challenge them with some questions ... View more

Hi Dave thanks for your reply its much appreciated, i have gone though the same journey almost, i was having pain in the stomach and got to a point i couldn't deal with it, so i visited my GP who organised some blood test to find out from results i was anemic with an iron levels of 2 which stayed like that for 3 months, I was then sent to Emergency department and after a long night in excruciating pain and lots of pain medication nothing helped so they then decide to have a colonoscopy where then the cancer was from in the lower part of the colon, so on the 25th August i had the operation to have it cut out and also had it rejoined so yeah no colostomy bag which i was very happy when i woke up. so its now been a month and so far so good but going to see my oncologist tomorrow to see about my chemo sessions coming up as the cancer has spread to the lymph nodes so hopefully they can reduce that and onto a fully recovery. thanks for you time good to hear from you again All the best for your Chemotherapy session ... View more