Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org
Beating Bowel Cancer Community

Stage 4 bowel cancer

Seaview

Lonsurf

I am currently stage 4 metastasized bowel cancer. Having tried the usual Oxylaplatin; then irinotecan I am now on my second cycle of Lonsurf. This is kicking me hard, I am wondering is there any point continuing with chemo if there is no quality of life, just lack of energy, pain and nausea.
Has anybody else been through this and is it worth persevering ?

GD62

Hello @Seaview

I am stage four bowel cancer too, and just taking the treatment as it comes surgical and chemotherapy. And as you say if the side effects are unbearable then maybe have a conversation with your oncologist to see what can be done to manage them could be your first port of call.

Just make sure that you get some emotional and psychological help you need to so that you make the right decision for yourself. Equally, I know where you are coming from.

Good luck :)

Seaview

Thanks for your good wishes and observations GD1962.
As you know this is a tough road.
Surgery not an option I'm told... It is n the peritoneal, liver and a small sign in right lung. CEA has been sea sawing up and down in recent months.
Best wishes 🤓

Regalo

Hi@Seaview.
I am sorry that the treatment is so tough....it is difficult to balance quality of life with treatment. I think we are all scared of saying no to treatment and only you in consultation with the professionals can decide that. I am still on the irinotecan stage, but after 25 cycles you start to wonder if the body is beginning to resist. Cancer is a tough journey and thank goodness we have this group to turn to. Sending you lots of positive vibes. :x::x::x:

Bear G

Hi @Seaview
Welcome to the forum, I’m glad that you’ve found us and hope we can help and support you.
Sorry to hear you’re having a rough ride with your chemo, it can hit some of us very hard.
In terms of your question, it really depends on your personal feeling on the matter and whether or not your getting benefit from the treatment.
One of the issues with chemo is that we are very aware of the side effects but can rarely see and feel the good things it’s doing for us. CEA is not a very reliable indicator alone (in fact an increase can mean the chemo is working) so it’s reslly only when you get a scan that you get to see the good things.
When is your next scan?
It may be worth calling your chemo nurse for a chat about how bad the side effects are to see if the team can give you any other things to help manage things better.
It’s also worth keeping a diary of how you feel each day so you can see if there are predictable patterns that you can work around, it would also help to inform your team on your side effects.
Hope things settle down.
Big hugs
Bear
:x::x:

Seaview

Hi Bear, thank you for your greetings and observations. It seems we are on a similar page in respect of the journey. Until this cycle, I have maintained a journal outlining the good days and not so good. My oncologist has requested a scan for me some time later this month.
I am also linked with our local hospice palliative care team and am due to receive a home visit from one of the consultants later this week.
I guess I'm just worn down by the constantly feeling unwell. My outlet has been walking by the sea side and playing golf, I don't have the energy for either these days! The lack of energy and subsequent lack motivation are cumulative.
Hope your journey with this beast is manageable.
Best wishes
Sea view.

Jacey Connell 74

@Seaview I have been through the exact same over the last few weeks. I have had 23 cycles. Oxy And Folfiri. I spoke to my cancer nurse and she was brilliant. I was referred to the hospice due to deterioration and breathlessness. The hospice took over my meds sorted them out gave me meds to help with my symptoms and I feel so much better. My oncologist has been great to. Encouraging me to go back to chemo so no I feel more positive as I don’t feel meh anymore I am going back to chemo to finish the cycles. My oncologist and I have agreed if the cancer doesn’t stabilise then it’s time to have quality time. So fingers crossed the chemo will stabilise.

Baxter2

Hi @Seaview and a warm welcome to the forum from me too.

I’m sorry you find yourself in this position and are questioning whether you should continue with treatment or not. I would certainly urge you to talk with your palliative care consultant as there may be more that can be done to alleviate the side effects.

Do you have close family around who you can have an open and honest discussion with? I guess the other thing is counselling which may help you come to the right decision for you as well as the possibility of anti depressant medication if it’s thought this would be of benefit? I use them and wouldn’t dream of giving them up in recognition of the fact that I need all the help I can get to remain as positive as possible.

I hope we can offer you something here too. Sometimes just getting things off your chest is quite helpful and there will be many forum friends ready to offer you a virtual shoulder to cry on or there to listen to a good old rant if that’s what you want.

Sending you all my very best wishes,

K💚💙💜💛❤️

Seaview

Thanks for your response. It is certainly a rocky road and not a comfortable journey.
I do intend talking with the consultants and reviewing my options. Just not certain how much more of the chemo I can tolerate.
Best wishes

m2

Hi there, I started my 4th cycle of Lonsurf today. I have been in quite a lot of pain for the past few weeks due to the fistula between my bladder & my colon, peeing gas & yucky stuff regularly, I feel as if the chemotherapy is killing me slowly, it is also making me depressed. Saw the doctor yesterday, it seems my body is coping better than I thought, hence able to go on to the 4th cycle. However, I will be having a blood transfusion next Wednesday as I am now anaemic because of Lonsurf. I will have a CT scan before my meeting with my oncologist next month. Just last week I was about to give up chemotherapy as I was feeling so low that I could not see the point of prolonging my suffering... I hope you are able to hang in there & have the support you need. Hugs.

HH79

Hi @m2 sorry to read about how things are going. I read your profile and have / have had same Oncologists! (A mix of Stoke Mandeville & Oxford) we should sort a hook up again soon, eg Hemel or St Albans. I’m in Tring :x: