Just diagnosed

If you've recently been diagnosed with bowel cancer, our 'Your Pathway' booklet is a great resource packed full of information about treatments, surgery options and patient stories

sare

51 and recently diagnosed with liver, lungs, bone and adrenal gland mets

Hi guys, new to forums and don’t do social media so please forgive any mistakes! Having palliative Folfox and cetuximab for above, just had 3rd round. My hip pain (iliac crest mets) has completely gone so feeling very hopeful things might be working. I would love to hear positive outcomes from people who also have widespread metastasis. Sorry, should also mention primary is decending colon, diagnosed in Oct 2021 and mets confirmed Nov 2021. Diagnosis came as a bit of a shock as even as late as Oct thought I had something like IBS. When I was given the result of my PET scan in Nov my big focus was to give my teenage daughters the best Christmas I could. We had a fab Christmas. Now we are into Jan and I feel things might be getting better and I’ve found out that people can be given years with some of these treatments I am much more optimistic. I want to do whatever I can to help myself and would value any tips, suggestions or happy stories.

bettebette

Hello @sare I am glad to hear you had a fab Christmas and are now feeling much more optimistic. You will find lots of positivity on the forum and although your situation is out of my experience I am going to flag up @Baxter2 and @Lirio345 who both have positive stories and experience and will be able to offer you lots of tips and suggestions or advice.
Sending you very good wishes :x::x:

Lirio345

Good morning @sare, a very warm welcome to the forum but I am really sorry to hear of you very recent diagnosis. I imagine you are still trying to get your head around things.

If you click on someone’s username you will often be able to see their story - so do have a look at mine. In short though I was diagnosed at stage 4 (mets to liver) in January 2015, so yes seven years ago. I have had two Bowel resections and a liver resection, but due to a rapid recurrence in my liver I was started on FOLFIRI and Cetuximab in January 2016. I have been on this treatment ever since and have had no evidence of disease since July 2016. Chemo is part of my life and I can do the majority of things that I want to.

There are a number of people on here who have been on treatment for a long time and hopefully they will come on to say hello.

There is a really useful BCUK publication (link below) that you might find of help. Meanwhile you might also like to have a look at Penny Brohn website which offers some amazing holistic support - which in my opinion is also really important. Take very good care and please stay in touch, Kim :x::x:

Thank you for the tag @bettebette :x:

bowelcancerorguk.s3.amazonaws.com/...ncedBowelCancer_BowelCancerUK.pdf

Baxter2

Good morning @sare and another very warm welcome to the forum! (Thank you for the tag @bettebette 👍) I'm sure you'll find this a friendly and supportive community with lots of users willing to share their knowledge and experience.

I'm so sorry about your recent diagnosis and can only imagine how this has affected you and the family. Good on you determined to have a lovely Christmas with your family despite how you are feeling. I think it's great that following starting treatment, that already your hip pain has completely gone! I cam remember this happening to me too when I started Folfiri and Cetuximab and how my tumour markers continually reduced each fortnight too. Scans confirmed things were reducing nicely and that the treatment was working.

Like @Lirio345, I've been on continuous treatment since Feb 2016 (with a six month break for two large surgeries) and continue to live a near normal life despite this. There's lots for you to feel positive about and I hope the treatment is as successful for you too! Please ask away if there's anything at all I can help with along the way. We're all here for one another anytime!

Sending you lots of love and my very best wishes,

Karen 🌼🌻🌺🌸🌷

sare

Dear Karen, Kim and Bettebette,
Thank you so much for your replies. I cried tears of happiness this morning. I have read your profiles and you are such brave and lovely people and have given me so much hope.
I have arranged a private appointment with a Surgeon and Oncologist at the Christie hospital in Manchester just to see if their might be any other options for me. I want to feel I am doing everything I can and would like a plan B.
Knowing you have managed so well and so positively with treatment and has opened up a whole new possible future for me.
I know I will have loads more questions for you .
Just wanted you to know what a difference you have made, wish you could see the smile on my very worried husband’s face when I told him your stories :x::x:

Baxter2

I'm glad you've drawn some strength from our stories @sare! That is what the forum is all about amd it's great to know we've made a small difference to you today. Always here for any questions or discussion. You're welcome to message her or via pm if you'd prefer. There's lots to feel hopeful about!!

Lots of love,

Karen 🌺🌸🌻🌼🌷

Lirio345

Hi again @sare, I am so glad that our stories have helped and I love the idea that you drew some hope from them, - we all need hope don’t we? I think it is really wise to get a second opinion, - as you say you need to feel that you are doing everything you can and they may well come up with some other suggestions although FOLFOX and Cetuximab is a pretty standard treatment and is often very effective.

You are doing absolutely fine on the IT side but just so you know if you want to tag someone use @ in front of their username as I have yours, although annoyingly the notification often ends up in someone’s junk mail!!

Ask any questions at all - we are here for you. Take care, Kim :x::x:

Jane39

Hi @sare
Sorry for my delay in replying.
I am sorry to hear of your diagnosis. Sounds like your are doing well.
You have had some great replies above.

I had a similar diagnosis to you (minus lung). Extensive spread to liver (too many tumours to count), bones ( skull, spine and pelvis), adrenal gland and distant lymph’s. That was in Nov 2017 after having two primary bowel cancers in 2016. Have a read of my bio (click on my name) - I need to update ! I’ve had 5 years of continuous treatment (mixtures of all sorts) and recently have been told that I am in remission. I have been off treatment for 12 weeks.

So as you can see, there is always hope. The forum is amazing where we learn so much from each other, become informed and feel empowered to ask our clinicians for various options and treatment’s.

Feel free to ask me any questions.

Take care, Jane :x::x::x:

sare

Thank you @Jane39. Hopefully I have “tagged you in”, I’m a social media newbie ! Your story too has been a real inspiration. So good to know there is all this support here :x::x: