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
April 2016 - my mum was diagnosed with stage 3 bowel cancer. Had surgery to remove tumour from bowel and some lymph nodes. Then met with an oncologist and had 7 cycles of chemotherapy 2017 - all bloods and scans were clear Feb 2018 - her bloods indicated her cancer markers had increased. She and my Dad went overseas and upon their return in July 2018 she had a follow up blood test that showed they were up again. She had a scan which confirmed there was a tumour in her stomach wall so this was operated on and then she was referred to a radiation oncologist for radiation. April 2019 - a tumour on her rib was discovered. This was deemed inoperable and she was again referred to the radiation oncologist for radiation. October 2019 - inoperable tumour on her windpipe was discovered and her new oncologist (she had not had an oncologist since 2016 when her first one retired part way through her treatment) requested testing of the tumour and this is when BRAF mutation was found. December 2019 - mum was put on a new chemo (her 2nd chemo) January 2020 - mum had her 2nd cycle of chemo and then became extremely ill with severe pneumonia and spent three weeks in hospital. During this time her treatment was paused and she was very ill. February - April 2020 - she was extremely breathless and her oxygen levels were constantly in the 80's. The chemo pump that she had initially started in December and stopped after being ill with pneumonia seemed to be deemed an option that failed HOW???? she got sick and was taken off it, there was no progression whilst on it. The breathlessness turned out to be a tablet non cancer related that was attacking her red blood cells, it is so rare her oncologist had never seen a live case which is why it took so many months to diagnose. May 2020 - after months off treatment, and only starting an oral chemo in April 2020 she was advised that the cancer had spread to her brain. She had whole brain radiation and the attitude from the GP and oncologist in the clinic was like "we're sorry this is it" yes on paper brain metastases aren't great, it isn't the time to not try for your patient either June 2020 - I found a trial drug/targeted therapy for the BRAF mutation and her oncologist advised she would put my mum on this. A few days after being on it, she contracted pneumonia again and spent 3 weeks in hospital so the trial drug was stopped/started from June - December 2020 for all these peripheral issues that were popping up December 2020 - mum had a blood test, cancer markers were up and my mum was told a week out from Christmas that the drug was no longer working, its time to let nature take its course and that if she could cancel the order of the trial drug she had she should do that. This clearly affected her Christmas she sat there and everything we did she would think this was the last time she would see people etc January 2021 - mum had a PET scan and her oncologist told her she shouldn't have been here at Christmas, and her result is good so she can actually go back on the trial drug June 2021 - she had a fall and a PET scan showed a tumour on her hip. Her oncologist then said the drugs needed to be given back as they weren't working and needed to be available for other patients who needed them and then did some radiation and told her there really isn't any options and put her on an oral chemo and said when this fails or you feel to sick on it throw it out and then its nature taking its course Now, I'm not saying her oncologist is not a good Dr or doesn't know her stuff, but I feel that she hasn't been with my mum from the initial diagnosis she came in 3 years after her diagnosis. How if my mum had chemo in 2016 and chemo in 2019 that was stopped because of pneumonia has she exhausted all options of treatment? Why is there a patient who has BRAF gene and bowel cancer like my mum, had it metastasize to the brain whilst on the trial drug, but she is allowed to continue on the trial drug as it is keeping other cancer in her body stable - why isn't this the option for my mum? They clearly got their assumption wrong in December 2020 as she was put back on the trial drug for 6 months. The hardest part is trying to get my parents (my dad goes to the appointments) to understand that they need to ask questions, my mum just takes what her oncologist says as gospel and won't ask, challenge or question anything. It is really hard to hear my mum keep saying "well nature will take its course soon, that's what Louise said" How do I try and get them to see that asking a question isn't meaning their Dr is bad, it is simply a matter of asking a question as it is about advocating for your health and your life
... View more
My mum was first diagnosed with bowel cancer in April 2016. It was easily diagnosed, successful surgery and chemo treatment. For 12 months she had good results but then in late 2018 cancer was found in a muscle near her stomach. This was harder to detect/diagnose and harder to operate on too. She had surgery & then radiation and all seemed fine. She was then getting pain on that side & put if off for a while putting it down to pain/side effect to radiation. Mid April this year it was found she had a tumour that was near her rib cage - over the few weeks the pain got so intense that tests showed it was wrapped around her rib & a nerve. She has to have 3 rounds of very targeted radiation in a week and then (hopefully) surgery to remove it. I live interstate and find it really hard being away from family during this. I also feel like my parents are holding information back in this last one and I'm a mix of emotions too. On one hand I'm scared, worried & upset my mum is 63 she is too young to leave us and on the other hand I'm angry - angry that she didn't do anything to try and adjust her lifestyle after her first diagnosis back in 2016. I feel bad being angry at her (though I don't express it to her) but I just don't know what to do or say
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.