Decembeard

Life with bowel cancer

dee83

Terminal bowel cancer with widespread liver mets

Hi

I’m nearly year in since my diagnoses and I started on folfox which shrank the tumor to 1.8cm then came off that on 12 cycle due to side effects then on 5fu only didn’t work so largest tumor crept up to 2cm and now on Folfiri

No surgury been given and no idea where the treatment is heading
Feel like a lost cause

Gypsy

Hi @dee83. There are others on here much better able to post for you from their personal experience so I am just here to say Hi and to offer a hug as you are so down. It sounds as though you need some answers from the oncologist as well. How long have you been on the Folfiri- have you just started it recently? I hope that you are coping with it ok? There are others on here having it and I'm sure they will be along to post for you. I know it is a good treatment for many.
No one is a lost cause on here dee as we are all in each others thoughts and there is lots of support on offer- so well done for posting. I will look out for your posts now.
Thinking of you, love Gypsyxxxx

GD62

Hello @dee83 So sorry to read your post that you are feeling low. I think @Gypsy is right and maybe a good idea to have a conversation with your oncologist or cancer nurse, and it is a struggle when things don't work out. Like you I had three liver mets , clustered and less than 1cm, and peritoneal met as well. They ended up removing about 50% of my liver and lots more too.

Had an NED recently but see it as a short reprieve and inevitably it may well recur later. I fully sympathise as even with partners , family and friends it is still a lonely walk. That said, have a good chat with your nurse and find out the clinical pathway they have in mind for you. I'll be keeping you in my thoughts too.

Positive healing and hugs :x:

Lirio345

Hello @dee83, I am so sorry to hear how miserable and uncertain you are feeling, but I totally agree with the others that you need a better idea of your treatment plan. There are many of us on here who are stable or showing no evidence of disease even though we were diagnosed with Bowel cancer with spread to liver and/or lung for example, three, five or more years ago. You are NOT a lost cause, but for some reason haven’t been given the information you need to take some control back. When you feel ready to you might want to have a look at some background medical stories by clicking on the forum user names. This forum is brilliant at helping, supporting and sharing of information. Take very good care and please stay in touch, Kim :x::x:

Lizalou

Hello @dee83
I am so sorry to read your worrying story. It really sounds as if you are not being given enough support and information. As the others have already said, you need more help.

I have been luckier than you, with a stage 3 diagnosis, But like you, I was given no information or support until i looked for it myself. I would suggest you speak to your specialist nurse and to your GP today, as a starting point.
It sounds as if you need a better understanding of your situation, so that you are better able to access your options.

If you can give us more specific details, I am sure there will be lots of us here who will be able to share experiences.

Do check out the booklets and publications here on the bottom of this page. And as the others say, check out some stories by clicking on names . @Baxter2 and @Bear G both have very positive stories.

Best wishes :x:

determinedjoan

Hi Dee 83, so sorry you’re feeling worried & down .
I’m currently on Folfiri & tolerating it well.
V best of luck with appts & treatments. Well done 👍 4 posting; I hv found this forum incredibly knowledgeable, supportive & encouraging; hope u will too. Love, hugs & healing vibes

Baxter2

Good morning @dee83 and a very warm
Welcome to the forum!

I’m so sorry reading your post and learning that you’re feeling like a lost cause! Of course you’re not! Oncolpgists seem to have such a variety of communication skills and styles. Some will give loads of information and
others not. Some are very hopeful
and optimistic and others the complete opppsite (I’ve experienced both!!) it sounds like you need to have a good sit down discussion with yours so that you feel completely Involved in decisions and treatment plans. Do you have someone who chums you to appointments? Perhaps you can both sit down and compile a list of questions for your next consultation?

Please have a read of my profile. I’m also on Folfiri and Cetuximab and have had about 46 cycles to date. Fortunately
I tolerate it pretty well and lead a great life! I’m currently typing this on my phone whilst. Cradling my 7 week old grandson who stayed over last night. Cancers not stoping me from living thankfully!

Please feel free to message me if you like.

Sending lots of love and warmest wishes

K💚💙💜💛❤️

Bear G

Hi @dee83
Welcome to the forum. I’m so pleased that you’ve found us and hope you’ll find this a lovely a supportive place to be. You’ve already had some great replies.

Like you, it took me a long time to find the forum but it’s been such a help to me and so many others since then.

You are most certainly not a lost cause, in fact you’re doing great! You’re one year into the journey and are now on one of the best regimens for Bowel cancer. Please be assured that folfiri isn’t a fallback treatment, it’s done the magic for lots of us, me included.

The whole thing with cancer, especially those of us with stage 4 disease, is tailoring the treatment to us as individuals. It’s a matter of finding what works for us and that we can tolerate.

Fingers crossed Folfiri will be that for you.

Please take it easy and try to welcome your chemo as your friend that’s there to help you deal with the cancer.

A few of the others have mentioned reading our profiles, you can do that by clicking on our names.

As well as volunteering as a moderator this forum I run a campaign with the charity for stage 4 patients. You can see more on www.striveforfive.org , it’s also on Twitter and Facebook as “@striveforfiveBC

We’re all here for you

Big hugs
Bear
:x::x:

dee83

@Bear G @Baxter2 @determinedjoan @Lizalou @Liriodendron345 @GD62 @Gypsy

Thank you guys

I do have to get more information of them I’ve had a word with my gp about this and she going to get oncoligist to included me a little bit more. Specialist nurse what’s that? I’ve just got a Macmillan nurse last week. Sometimes it’s like there talking about you rather than too you. And it’s what they don’t tell you is the stuff u wanna hear but there probably waiting for me to ask so they don’t upset me

@Baxter2 46 cycles that is amazing I was kinda thinking it was like the oxaplatin where maybe 12 cycles maybe
And I have read your journey and it seems like a long journey with lots of twists and turns and obviously going very well at the moment with your newborn grandchild

@Bear G striveforfive sounds like a great positive message and feel really uplifted by it

I do need to take a step back I really bad at listening to everything people say and it’s just one person opinion (as my 9year old says-amazed when she said that) and she right to a certain extent obviously she not fully aware of the ins and outs but when the down days come she is a very positive light in my life

So striving for five is a must see my 13year old get GCSEs see my 9year old start secondary.

I have got notebook with quite a lot of questions building up at moment

Thank you all for your time and best wishes and hoping everything is going as it can do for you
Speak to you soon
Lots of love
Take care
Dee83

determinedjoan

My boys keep me going too. Hang on in there Dee; imho, every day is worth fighting for.
Thinking of u & sending love, hugs n healing vibes :x:

1234annie

Your kids are similar ages to mine @dee83 it's really tough for you all.
Can you ask for a second opnion? Have you also been refered for any counciling to help you cope? It does feel like mental health isn't very well addressed when it comes to cancer. We are all here for you, keep talking because if definitely helps.

Annie :x: :x:

Lizalou

It's great to read your more positive update @dee83

But I really think that, for some of us, this whole cancer thing has been handled very badly by the professionals, as @1234annie says.
I eventually got to talk to a counsellor, who helped hugely, but I had to 1st, find out that one was available, and 2nd, ask to see her; it was never offered.

I am now in the position of comparing my diagnosis and early treatment with my husband's. Different cancer, but also different health authority. He has already had a whole folder full of information (even the nice blue folder was provided!). He has phone numbers, booklets, information about a drop-in centre, exercise classes etc etc. Appointment letters or phone calls have come through immediately.
As a result, we are both coping so much better, because we feel we are not having to Google for ourselves, or chase appointments .

Hope you continue to make headway. Hugs :x::x:

angepange

Hi @dee83 . I don’t have anything to add to these wonderful posts, but I just wanted to say hi, and give you a virtual hug . Lots of love Angie :x::x::x:

dee83

Seen oncolgist today so got some answers so feel little better
Ask for second opinion still tho I want as much information as possible
My liver was like a chocolate chip cookie lots of little leisons all over the liver
Im KRAS mutant not sure it makes a difference just that I can’t have certain drugs as won’t work Got some new lesion appear as the 5fu on its own didn’t work So I don’t know what’s next but 🙏 The Irinotecan works and stay positive and hopeful xxx
TAke care

determinedjoan

Glad you’re feeling a little better today; hang on in there. Sending 💗, hugs, & healing vibes :x:

Lizalou

I'm pleased to see that you are finally getting some answers @dee83. Fingers firmly crossed for you :x::x:

Gypsy

Sending love and hugs @dee83. Yes, here's to the latest treatment doing its stuff ! The second opinion sounds like a great idea and also, as you say, getting as much information as you can. Where will you go for the second opinion?
Love Gypsyxxx

dee83

Well @Gypsy I’m currantly at Christie in Manchester and that’s suppose to be a good xtremely good hospital so I’m currently going through the internet looking for a very good hospital and I’m not having much luck but I’ve got a few more days to look into it and then get back to the Christie which hospital to be far she has give me now all the information I wanted and although the diagnosis probably won’t change I’m just gonna cross check information just to make me feel better and get as much knowledge as possible cos I want to be a little more pro active in keeping the body recovering after chemo which had 2nd cycle and tolerating well again so fingers crossed xx thanks everyone and take care :x: