I joined MacMillan about 18 months ago when I was diagnosed with Stage III Melanoma and had to become an expert in Biological and Immuno-therapies in double quick time.
I was declared clear in May and in June my brother was diagnosed with Bowel Cancer. After bowel resection they discovered the cancer has spread to the liver and they consider it to be inoperable. The first line of Chemotherapy has not worked and he has had a PICC line installed and is about to start the second line of treatment.
Has anyone out there any information of trials or new technologies coming through that could give us any hope? The future does not look good, but we would dearly love to be able to have him around as long as we can.
I know his cancer is RAS mutated so that limits the options considerably.
NHS is obviously very limited. What is the options if going private?
First of all, I am sorry your family has been affected twice and in such a short amount of time. My mum was diagnosed with stage 4 bowel cancer (RAS mutated too) a couple of months after my sister received her all clear after 6 months of intensive chemo to cure a lymphoma.
I am definitely not expert but these are some of the treatments I have been researching. I am sure people will be able to suggest more and advise on private vs NHS (my mum is receiving treatment abroad as she doesn't live in the UK).
https://www.royalmarsden.nhs.uk/your-care/treatments/radiotherapy/cyberknife
https://www.cancer.org/cancer/colon-rectal-cancer/treating/ablation-embolization.html
I have also heard of a drug used to treat melanoma that apparently can treat colorectal cancer too. This article is a bit old but I know somebody that has been put on a trial with this drug and good result:
Hi ,
Really sorry to hear about your brother . It’s a horrible situation .
Like LittleMissM , I have been following the immunotherapy use in bowel cancer . In MSI patients in America are reporting some success with Keytrunda and have even made it a first line treatment option . Even MSS patients with a significant tumour mutation burden are having some success although this in its very early stages of being used over there .
There is a worldwide clinical trial APP for MSS patients . Not sure what your brother is . I am having guests over in a little while but I will look it up tomorrow for you if you like . It’s comforting to at least be informed . LittleMissM has given you some great resources.
l am not sure if there is clinical trials for immunotherapy or if it’s only private . My friend has been used as a test case for combining Immuotherapy with chemotherapy with a primary lung tumour with spread to several sights . It’s been successful for her and is only just been made available in Scotland . Got a wee bit media attention. Hoping to see this move into bowel cancer too !
take care ,
Court
Helpline Number 0808 808 0000
Another thought to throw into the mix, have you sought a second opinion? Is your brother being treated at a specialist liver centre? My local specialist centre is Basingstoke Hospital where they do treatments such as HIPEC as well as liver surgery. In your position I would be asking his team for a second opinion from a specialist centre. At least that way even if the answer is the same you would know that you tried every avenue and they are more likely to know what trials are going on.
Nicky
Thank you all for the great information. Apologies for the delay in responding.
You have given me a great deal of information which I will spend the coming few days researching.
This forum is a fabulous source of information and support for people in the worst of places in their life and I thank you all for taking the time to come back to me
Regards
"Get over the shock, and you can get over the rest"
My brother has been reluctant to ask for a second opinion in case he would offend the oncologist he was dealing with. I guess that is a reflection on how good a guy he is.
I have managed to get him to make contact and get a referral to a liver specialist in London and they are gong through his results. Hopefully that will show some options - I just hope he hasn't left it too late
"Get over the shock, and you can get over the rest"
Hi there , the surgeon who did my op does specialise in liver mets. One surgeon turned me down but this one took me on board.i don’t have liver mets but my surgeon has been doing these ops for years. If you don’t have any joy please contact me and I will send you details
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