Hi ! This sounds so awfully frustrating to you.. and im so sorry about your mother.. it's a terrible diagnosis.. and a tough road. But as a carer I've seen many cases of my patients with cancer go up and down.. there's so much misdiagnosis, or misreaddings, delays and side effects that can continue down this road..also her immune system would of become immunocompromised during chemo which does add the risk of her getting pnemonia or really unwell which requires hospitalisation because her body can't fight the nasties as she could before...its very hard hearing that it has gotten worse espeically for you when things were looking so up.. I'm so truly sorry but the oncologist can only say and do with the results they have and as the road goes on as well.. but they are the best medical support even if family thinks not. .. my MIL got told by her oncologist even though it's sad that she better start living her life now as bowel cancer is such a strong and aggressive cancer it's unpredictable. My MIL in her mid 40s just got diagnosed around 4-5 months ago with stage 3 bowel cancer.. she has had her tumor cut out 3 months ago and half her bowel.. she's been undergoing chemotherapy at our home now ,5 hours at the hospital followed by 48hours via chemo pump intravenous at home.. we will see how things go down the line in the future but just be support for her... but may I ask a question .. during chemotherapy treatment was your mother around young children and babies??? My paediatrician is saying I'm endangering my children all under 5 years and my newborn by having my Mother In Law commence treatment at home and that as it is cumulative there is more risk as she continues the treatment via side effects.. my anxiety as I do care for her and my three children as I've had to stop work has increased dramatically as soon as he told me this. If you can give your experiences of your mother during chemo and what she done to stop exposure to family in the household would be so much appreciated... I'm sending prayers and we'll wishes to you x ... View more

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,   Frustration and the feeling of helpness can often result in indirect anger, whether you are angry at yourself or others around you. Communication is always the key, did you thoughtful express your feelings to your family or even friends? You shouldn't leave things to bottle up, they can manifest themsleves into other parts of our lives. Besides they are your family, they love you - don't be afraid to tactful express your feelings or worries.    And from there, prehares additional suggestions and ideas can be offered about lifestyle and etc.   However if you feel that maybe your not quite ready and need additional advice/support, you could always try contacting the cancer council: Ph: 13 11 20 for support services or check at what they have to offer online instead?   Support: https://cancerqld.org.au/get-support/cancer-emotional-support/cancer-counselling-service/   ... View more