Hello everyone. This is my first post. My mum was diagnosed with advanced colorectal cancer with non-resectable hepatic metastases and last week we were told that her cancer carries the braf mutation. When I enquired with the oncologist about immunotherapy I was told I was getting ahead of myself and they must first see how the mets respond to a FOLFIRI chemo regimen first. I would like to prefix what I am about to say with I am not a doctor. I am an experienced veterinary surgeon and credit myself with an understanding of staging and treatment as well as the ability to read peer-reviewed literature and critically appraise it. I know this intellectualisation is my way of coping with not having any control but it is the only way I can get my head around what is happening. When I asked about her CEA levels I was told they don't measure that anymore. There have been failings and miscommunication about my mother's treatment every step of the way, which is now in the hands of PALS thankfully (including my being told that her cancer isn't curative by a nurse 1 week before my mum was told). It is my understanding that a triple combination therapy with encorafenib, binimetinib and cetuximab has been shown to significantly improve survival times for patients with this type of cancer, as a result of the BEACON trial and that this was approved for use on the NHS back in November. I am bewildered and confused as to why this hasn't been discussed with us. The plan is currently FOLFIRI "indefinitely" for as long as she tolerates it and a repeat scan in 2-3 months maybe.
My mum's mental health is in the toilet, she feels like giving up, she can barely eat and can only sleep due to the medication her GP (who is wonderful) has given her. We've been given no indication of a prognosis other than braf mutations carry a poorer one than others and I feel it's this dreadful limbo she's been left in that is causing her so much distress.
I wondered if there are others with experience of this type of colorectal cancer and what treatment pathways have been discussed with them. Any insight would be gratefully received.
Hi Hayloft
Welcome to the forum . Firstly I am really sorry to hear about your mum . It is a very dismantling diagnosis at the beginning. Secondly I can completely associate you reading research articles relating to current practice. Previously worked in a professional allied to medicine and moved quickly to Pubmed search engine and read research articles from literally across the globe if your mentally strong enough to process it .Although I do think being a profession such as you are you are better placed to handle that . It did help me quickly grasp the current practice at play . I should also suggest you click on my user name and read my mum’s story . It’s not without hope but as you will have probably grasped depends on tumour location and response to chemo . You might find reading the Nice guidelines regarding the Beacon trial and the course of Immunotherapy. The latter being an exciting development I have been following in America for some time .
My mum is Wild type and despite England getting access to biological agents at the time she missed out . However there was also the tolerance factor to consider . My own mum found two agents quite enough ! And as you mum’s oncologist pointed out she did in fact mount a response to it . I only say that to encourage you but also fully take on board the implications of the mutations and wanting the correct pathway . To say covid has caused havoc in oncology would be an understatement and it’s much better this wave than a year ago .
I sense your concern and anxiety around the correct pathway and remember your mum can have a second opinion .
Do you know a little more about the extent of her spread ? We certainly found going straight to chemo to shrink the visible disease and to deal with possible micro disease was a good plan and the second year she was referred for surgical opinion at a centre of clinical excellence for the liver where they removed 73% of her liver .
For us we got a good feel of what surgically was possible . They were very honest and I felt she made a very informed choice.
The CEA thing is a bit puzzling . You could ask her own GP to run it . I have noticed it’s not talked about too much on the forums and I understand can’t be looked at in isolation but it was comforting to know it made that initial downward trajectory. That was before my mum’s headed in the opposite direction . ( just chemo related) .
My mum’s was 7.3 I think before chemo and went down a couple of points then up to 11 . Obviously no oncologist but I do pay attention to my mum’s and it’s still traced over ten years later . In fact it spiked last year and triggered a scan !
Certainly the Nice guidelines should shed a bit of light on the Beacon trial in practice.
You will see people across the forums actually living for years on/off chemo . Surgery has allowed my mum to have years off treatment . It did take two full years of treatment to achieve a more stable position.
Once you see people living a good life in spite of a difficult diagnosis it does give some hope .
Take care ,
Court
Helpline Number 0808 808 0000
Hi Hayloft
I have had a quick look at the Nice guidelines for the triple therapy from the Beacon trial . If I am reading it correctly it’s approved as a second line therapy in England , Ireland and Wales ! Poor old Scotland remains out in the cold on this one ! That is maybe why the first line suggestion has been made . I could be wrong but have a look and see if you come to the same interpretation.
Do you know if your mum is MSI ?
Take care ,
Court
Helpline Number 0808 808 0000
I am so sorry to hear that Hayloft that is incredibly fast and I really feel for you trying to come to terms with the sudden change in your mum .
I would have thought they would have wanted to address any dehydration too! Hopefully the Dr will see to that today !
How is the visiting arrangements. ? Are you able to get down today to see her ?
Sending you and your mum much love and strength .
Court
Helpline Number 0808 808 0000
