Brother Stage 4 Colerectal Cancer….

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Hi,

My brother has been diagnosed with Stage 4 Colorectal Cancer in March/April, which has spread to his lungs and liver (multi bilateral liver and lung metastases (stage 4). The outlook isn’t good.

He is 47 and was mega fit and healthy… now a little weaker and tired.

This is devastating for us all. He’s not really come to terms with it as yet and is focusing on each day and we don’t speak about the future just the now…

I will need to talk to someone about that aspect, but also just trying to spend time with him and our family as much as possible.

They started him on Folfiri, then expanded to Folfox and now we are exploring Bevacizumab (Avastin) as the Folfiri didn’t work and we are looking to add to the treatment with Bevacizumab.

I’ve also commissioned a Tempus test to see if there is anything more that we can see from his bloods and biopsy for trials and other treatments etc.

The NHS seem to have narrow options when it comes to testing cancer and treating it. I’m not sure if the Tempus test will give us anymore options but worth looking at and we are getting it free as a friend is well connected.

I’m not sure what to do tbh. His oncologist says they can’t do much more than the treatment plan… Anything else would need to be self funded and the Bevacizumab is one aspect.

I just wanted to say what I’m doing for him in case there are other things I can be trying. We do talk with his Oncologist and care team but, it seems like it’s an inevitable road we are walking down, with not many options… just keeping him happy and going through the treatment until time runs out.

We have spoken with a private oncologist and will ask her to review the tempus results when we have them back, which I guess is as much as we can do. She may be able to suggest alternative treatments, for quality of life or to prolong things.

You hear of many people surviving different cancers, heard good things about places like the royal marsden etc, you start second guessing or feeling your brothers on a road with no options with his type of cancer, coupled with the nhs and the limitations of what they can offer.

Other than, discussing the practicalities of wills, spending quality time with family and friends which I’m making sure he does, doing fun things, speaking to my brother and making sure he doesn’t feel alone. I’m not sure what else to do now.

Maybe some time with one of your counsellors? For me and him? He hasn’t spoken to anyone like that, he just doesn’t want to process the bad news…bless him. I’m also finding it difficult, I get angry, cry driving the car when I’ve seen him, just feel empty.

Always his big brother looking after him though, giving him a hug while trying not to break down. It feels like a long goodbye…

interested in your thoughts….

Thanks

Steve

court over 2 years ago

Hi StevePer

Welcome to the forum. I had a lump in my throat reading your post as I also have a sibling I am very close to . A special relationship.

I have been around here since 2009 when Avastin used to be available through the special cancer fund and some people found it helpful. You might also like to join the bowel cancer U.K. forum as they have a stage 4 section and might have a bit more information on Avastin .

Have you looked at clinical trials also ? I have not had a look recently but sometimes some interesting ones come up . I used to keep an eye on the USA as they are a few years further down the road in terms of clinical trials .
Good idea to get another oncologist opinion and your brother is also entitled to a second opinion on the nhs if he ever wishes to go down that route .

Macmillan has teamed up with Bupa to offer six free counselling sessions but this is ring fenced for patients . The helpline has the details however they may be able to point you to local resources that may be of help to the wider family . They are also there just to chat things through with . They cover clinical and emotional impacts . 0808 808 0000.

We are also here so please feel free to keep chatting .

It can reduce the sense of isolation.

Take care ,

Court

Helpline Number 0808 808 0000

StevePer over 2 years ago in reply to court

Hi Court,

Yes, we had a second opinion from a more progressive private oncologist immediately we got the diagnosis.

She pretty much mirrored the first although suggested tempus to find out more and mentioned Avastin.

Ive a personalised cancer treatment company doing his test for free and we will know in 14 days if more can be done and any trial options.

We are taking Avastin next and self funding. My mate worked for the company that developed it. He’s been helpful and him and the owner of the private cancer care company are helping me look at options.

Once the results are back we will run by both oncologists, another oncologist they know and discuss ourselves as they my two friends know far more about this to see what is available.

I’ll post on the other forum too.

Thanks for your response and your time.

I go from pain to practical and back. Now in practical mode! Steve

court over 2 years ago in reply to StevePer

When my mum was first diagnosed I read through every research article I could get my hands on using Pubmed search engine . It was a difficult read as it gave a lot of prognostic information but setting that aside it did allow me to see what was being achieved .

One point you might like to ask . I take it your brothers cell type is not compatible with immunotherapy , particularly Keytrunda. However one lady in America is getting good results despite not being the right cell type . Given I am not a Dr and please make allowances for my stumbling interpretation of events . She was not a candidate from Keytrunda as she was not MSI however as her tumour mutation burden increased as her disease progressed she seemed able to access it . No idea how this was achieved .

Take care ,

Court

Helpline Number 0808 808 0000