Just diagnosed

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dazedandconfused

39YO, spread to liver

Hello
Yesterday I was diagnosed with bowel cancer which has spread to my liver. Was told I will be contacted on Monday following MDT meeting to advise when chemo will commence. I’m 39 and had thought I had a dairy intolerance. I’m reeling. Too scared to read up about it. Please does anyone have any positive stories/outcomes to tell me?

HH79

Hi @dazedandconfused lots of great help here and on the FB group mentioned. We aren’t medical and don’t know details of liver but it can be very well treated with resections. Take care :x::x:

dazedandconfused

Thanks for replying. Yes, he mentioned surgery after chemo. Just going to take it one day at a time and focus on getting through chemo first .

Quote from @ijp30:
Hi @dazedandconfused, so sorry to hear about your diagnosis. Its everyone's worse nightmare to hear they have cancer, particularly at such a young age.

Spread to the liver from bowel cancer is unfortunately quite common. The good news is that advances in medicine mean that it is often very treatable and in some cases curable. Younger people are often able to cope with more aggressive treatment so, again, that's in your favour too.

Starting with chemo to shrink and control the cancer once its spread is very common practice. Do you know if the plan is to hopefully operate after the chemo?

Baxter2

Another warm welcome to the forum from me @dazedandconfused. You'll find lots of support, friendship, knowledge and experience on here. This will all take time to process and can seem very overwhelming at first. Taking things literally a day at a time is often a good starting point as you come to terms with your new situation. We're all here for you. You can read our profiles by clicking on names and I'm sure this will give you lots to feel hopeful about.

Sending lots of love your way,

Karen 💚💙💜❤️💛

Jane39

Hi @dazedandconfused
Welcome but so sorry that you find yourself here.

I think we can all resonate with how you are feeling and it’s a massive shock .
But, as others have said there are lots of people here and on the FB group who are doing really well. I have been stage 4 for almost 4 years and various treatments have got me to a good place right now.
We are here to support you.

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

kawa909

Hi @dazedandconfused sorry to hear about your diagnosis but hoping you get a good plan sorted with your team….good luck with the chemo.

Molly2me

Thinking of you, sending strong vibes and hugs lovely for today :x::x:

Quote from @dazedandconfused:
Thank you everyone. I woke up this morning feeling like my world was ending. I needed to hear this. Putting my positive pants on and bracing myself for the call tomorrow. I’ll let you know how I get on.

Wegwe

@dazedandconfused sorry to read about your diagnosis. I hope they’ll call you early today to give you a plan, and that that will make things a little more easier for you.

dazedandconfused

Small update - a lovely colorectal nurse called this afternoon to confirm my case has been referred to an oncologist at The Royal Berks. I have to wait for them to contact me about commencing chemo.

I’ve started collating a list of questions to ask at my first appointment.

dazedandconfused

I have my first appointment with my oncologist next Wednesday. So grateful to have something confirmed as I was starting to get emotional this morning due to being unable to make any firm plans for half term next week.
The initial adrenalin that had been carrying me since diagnosis has expired and I’m feeling low and very tired now. Still getting out each day for a walk / fresh air.
Fed up of talking to friends and family about cancer now. I expect this is all very normal.
Is there anything I could/should be doing during this time?

Meg

I can't think of anything you should be doing other than whatever that takes your fancy but I am least practical person I know.

I tried to walk a bit more and get as fit and healthy as I could before op/chemo. It is good for the head as well as the body .

I know it seems impossible but try to do some nice things that are fun and will take your mind of it all, even for just half an hour and tell your friends family you would like to talk about something else when it gets too much, I was lucky it was in lockdown and I wasn't really seeing people face to face , it was so much easier on the phone to change the subject :x::x:

Lucy118

@dazedandconfused, I’m so pleased you now have an oncology appointment. Having a plan in place will help. Meg’s advice of doing fun things is a good one and continuing your walks is good too. Sending lots of love :x::x::x:

dazedandconfused

Sooooo first appointment with the oncologist this morning. Was advised there is also a met on my lung.

Going to start chemo within the next couple of weeks. FOLFOX and FOLFIRI once a fortnight for 12 cycles.

One administered whilst there and one on a pump over 2 days.

Giving it both barrels.

Hopefully start within 2 weeks.

Lucy118

@dazedandconfused, wishing you all the best for the start of your chemo. Let’s hope it works it’s magic. Are you up to date with covid and flu jabs? It may be worth checking with your team. I was advised to have the flu jab prior to starting, (I started chemo prior to covid), so if you haven’t had them it’s worth checking. Lots of love :x::x::x:

dazedandconfused

Yes, my GP arranged for me to have flu and COVID booster last Monday. So nervous of my school age kids bringing something home and making me ill/delaying my treatment :x:

Quote from @Lucy118:
@dazedandconfused, wishing you all the best for the start of your chemo. Let’s hope it works it’s magic. Are you up to date with covid and flu jabs? It may be worth checking with your team. I was advised to have the flu jab prior to starting, (I started chemo prior to covid), so if you haven’t had them it’s worth checking. Lots of love

Lirio345

I am glad you now have a plan in place @dazedandconfused, although I am sorry to hear about your lung met. Your team is giving this big guns and I am sure others will be along to talk about their experience with Folfoxiri. I am tagging in @Siona who will be able to speak from experience. Take very good care, Kim :x::x:

Lucy118

@dazedandconfused, I’m pleased you’ve had your injections. My son had a nasty virus while I was on chemo, which I managed to avoid. I disinfected surfaces, door handles etc and did lots of hand washing and he kept away from me as much as possible. If your children are old enough to understand they’ll be able to help protect you too. If they are very young you can only do so much. My friends also stayed away if they had any symptoms. Hopefully you’ll be fine. :x::x::x:

Baxter2

Hi @dazedandconfused

I'm so glad your oncology appointment went well this morning and you're all set to start your chemo in the next couple of weeks! It often feels a good bit better knowing the plan and also actually getting started! I've been on Folfiri since 2016 and it's worked great for me! Hopefully you'll get a similar effect too!

Sending you lots of love and very best wishes!

Karen 💜💚💛❤️💙

Michelle74

Hi @dazedandconfused best wishes for the start of your treatment, I was on the same regime, for 12 cycles, (also had cetuximab added after about 6). I tolerated it well and had good shrinkage. I've got school age kids and managed to avoid all the nasties. Try and boost your immune system, I have a nutribullet smoothie every morning and exercised whenever I was able. :x::x:

Siona

@dazedandconfused thanks for the tag Kim @Lirio345
I had the folfoxiri treatment every two weeks for 6 cycles and be assured your team is throwing everything at you to get rid of this or at least shrink it enough to take it out (not sure how big is the nasty in your lung). There’s another lady on it @SamanthaJane I’m tagging who might want to chip in.
Listen to your body: take a rest when you need it but feel free to stay active if you wish. I put myself the goal of going outside once a day.
Alongside exercise, meditation, nutrition and a support network are great tools you can implement to help you get through this. You want to work with the chemo to help you get to your objective (communication with your nurses too about medication and controlling the side effects read further down)
Gloves, scarf and a hat, the oxaliplatin will kick in after your infusion.
The first cycle is daunting but write down your symptoms: good to share with your team and for you to remember what happened and when (time flies and lots of things happen, wrote them down). Handy when you get ready for your second cycle and want to take your medication right before your side effects kick in (I had constipation for 2 days then diarrhoea right after, when I got aware of the pattern I could take my anti diarrhoea right before to minimise it) … same goes with anti nausea, etc. Write down also the effects of some medications on you (or lack of): it can be changed, dosage reduced or lengthen, other drug given, etc
I had two small children, one going to nursery while having chemo at this time of the year and got no cold or infection
Now is a good time to get this planned (I know, we plan a bit but can’t plan everything) and increase your level of fitness.
Lots of love :x::x: