Just been diagnosed with stage 4 advanced bowel cancer with liver mets

Hi, sorry to hear about your diagnosis. If it's any comfort, I was pretty much in the same situation earlier this year in February and I'm still fighting on. Mine was also diagnosed at stage 4 with liver metastasis and I was 37 at first diagnosis. Hopefully the new drug you've been offered does the trick. I wasn't offered it so can't advise on that side of things. It's shocking isn't it. I still have all kinds of emotions and thoughts about it. I'm sure something's going on. There seems to be a lot of younger people getting this lately. 

Main advice about practicality side of things is write everything down and get like a calendar diary with pleanty of writing space. There were so many appointments and dates to remember I found writing it down useful. And keeping a diary and having little goals can give you some normality and positive things to aim for aswell as being useful for those around you to keep up to date. They're probably feeling just as shocked as you. 

Macmillan can help massively with financial advice and getting you on PIP and ESA and apply for grants, they can direct you to companies that can even give you new white goods and energy saving things to help a bit. 

Not sure on your side effects but keep warm and comfortable mainly and keep talking to people about it. 

Maybe think about asking for a councillor, even for your partner too. 

It can be a long journey, others are in for surgery and sorted straight away depending on so many things. The good news is that even when things do not go to plan, like with me, after a couple of different types of chemo and radiotherapy, you can still have a good life and focus on the things you love doing. I'm in the frame of mind now that I'm living with it, rather than thinking I have a death sentence. Like a bad hip or a broken arm. It's a pain in the arse ...... Literally! excuse the pun! But it's just something to live with and recover from.

I'll be interested to know how the new drug goes for you. Really hope you get sorted asap. 

Hope you're doing okay considering. You can do this 

Hi Saturday14 

Welcome to the forum.

You have a lot to push forward for and congratulations on your marriage !

We do have a few people here who have used Keytrunda and doing well . You might like to read Moi2  and Africa1  bios . Thankfully Keytrunda is now funded and it has changed things for a few people .

My own mum lived an amazing 15 years after a spread to her liver and lived to become an older lady so it’s definitely not without hope .

Take care,

Court 

I am doing ok and I’m staying positive it’s just all the uncertainty and what if and why me stuff that is doing my nut in ‍ 

it’s nice to hear from people who have been in similar situations as everyone I tell don’t know how to respond and just keep saying “I’m sorry” which I get but obviously don’t help and I kind of don’t need.

i don’t want sympathy I just want to know how to understand and get through this without losing my head.

i want to know my partner is going to be ok as she is the one that is hurting the most, I will definitely seek the help of macmillion and use the tools provided to try and make this situation better.

i hope you get better too and would love to stay in contact and hear more of your story

I totally get the mental struggle. Wanting to know everything, sometimes not wanting to know, wanting a solid plan and wanting something to blame when there is nothing to blame and biology doesn't seem to give a solid plan. Its taken me maybe 5 months to almost surrender to not being able to know everything and put aside the what-if's. I look at food with suspicion and have changed to eating a lot less meat. No idea if it makes any difference like, but just not knowing what caused it has made me change a lot of things. There was feature on Country file a couple of weeks ago about the affects of pesticide on crops too. So who knows. Could be anything, or could be no reason at all.

Make sure you have a good medical team around you and build trust in them. You can always ask for second opinions if you ever feel kept in the dark or don't understand options. Sometimes I have to remind myself that no one knows what's going to happen tomorrow. So that way, we're still the same as before. It's also perfectly understandable to lose your head every now and again over it too. 

Hi, 

thanks for your message and congratulations on our marriage, was such a happy time but that’s quickly changed now and brought us back down to reality!

I will definitely give those people a message and see what they say, it’s the unknown about this treatment that’s horrible and the possible downsides to the drug sound insane!!

sorry to hear about your mum passing but I’m glad she fought on for a long time!

im too young to go anywhere yet!!! And I will fight everyday

Do you have any pointers on what I should be eating? Nobody has told me anything about that…..I was a huge meat eater, red meat aswell! I am a bit scared of it now since my diagnosis….but I don’t know what I should or shouldn’t be eating? 

So sorry you are going through this. My husband was diagnosed with stage 3 locally advanced rectal cancer earlier this year at 40. We have 2 young children and it has a been a huge thing to deal with. We also have 2 friends who were diagnosed with stage 4 CRC in their 30s or early 40s. 

If you are having Pembrolizumab then I assume your biopsy came back as MMR-deficient. The response rates with immunotherapy in that case are incredibly good. Recent clinical trials have shown amazing results even for later stage disease. Generally although they obviously give you a crazy list of possible side effects the immunotherapy drugs are better tolerated than classic chemotherapy.

I know it is hard to stay positive under the circumstances and in those early days your head always jumps to worst case scenarios but you are in good hands and you will have a lot of treatment options ahead of you.

In terms of diet, I would say we already had a fairly healthy diet but we have been trying to avoid processed meat (bacon, sausage, salami etc.) and cut back on red meat. I am trying to focus on getting the kids the best diet possible as they may be higher risk. 

Hugs to you and your family. As the wife I know how this can affect mental stress and anxiety in the partner too. I have found being on here, doing a lot of reading and research and talking to people have been incredibly helpful in trying to deal with my husbands diagnosis and treatment. There is plenty of support here for her too if she feels is would be helpful.