Stage 4 bowel cancer

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Train1

More Chemotherapy 12 Cycles.

Hello Everyone

I was diagnosed with Bowel Cancer in Dec 2020 with Stage 3 advance rectal Cancer.
I had Chemotherapy/ Radiotherapy then remove Tumour and then more Chemotherapy after Surgery.
I then in 7th June 2022 ( last month) given the bad news that they have found Several ( maybe 7) Lung Metastasis in the Right Lung this was confirmed after a further Pet Scan Done on 29th June last week.
I started on the 1st of 12 Cycles fortnightly with 8 hours spent in Hospital today and given a Pump for 46hours to be taken back on Friday.

Does anyone on this forum has any knowledge or experience on how I should go about dealing with this or has any positives about this kind of treatment.
I am really now struggling to cope with things specially after learning this will be of 12 Cycles going into Christmas.
Really finding it difficult to discuss with anyone.

Many thanks to everyone.

@Train1

Lucy118

@Train1, I am so sorry to read this especially as I remember when you were diagnosed. I’ll be keeping everything crossed for you that the chemo works well and you can manage with the symptoms and that they are minimal. I really don’t know what to say as 12 cycles is a lot. However try and take them one at a time. There are lots of people who have had lots more, who I’m sure will be able to give you much better advice. Sending lots of love. You can do this! :x::x::x:

Baxter2

Hi @Train1 ,

Sorry to learn of your lung mets and subsequent plan for 12 cycles of chemo. It sounds like you may be having Folfiri or Folfox? Please don't worry about the little chemo pump. It's surprisingly easy to get used to. Were you given a little bag to strap around your waist or attach to belt? At night, some pop under their pillow or tuck into their PJ's. I wear it on my little belt or clip it onto front waistband of PJ's. In terms of managing the 12 cycles it may depend on which regimen you're on but I find Folfiri and Cetuximab relatively ok and it's keeping me well with no evidence of disease at the moment. I'm on chemo for life and so have had around 133 cycles or so as I have it continuously every fortnight. I do get side effects but have learned to manage these. I'd say I manage to live a fairly normal ish life (part from now as I've recently had a couple of tricky issues resulting in two separate week long hospital stays but that's another story! 😂) please feel freee to come back with any questions or queries. We're all here for one another!

Sending lots of love and hope you have a reasonable night,

Karen 🌻🌻🌻🌻🌻

Train1
Quote from @Lucy118:
@Train1, I am so sorry to read this especially as I remember when you were diagnosed. I’ll be keeping everything crossed for you that the chemo works well and you can manage with the symptoms and that they are minimal. I really don’t know what to say as 12 cycles is a lot. However try and take them one at a time. There are lots of people who have had lots more, who I’m sure will be able to give you much better advice. Sending lots of love. You can do this!

Hello @Lucy118

Many thanks for your kind support, I don’t know if it’s just me that finds coping with my illness difficult.
Thanks again really appreciate.

@Train1

Train1
Quote from @Baxter2:
Hi @Train1 ,

Sorry to learn of your lung mets and subsequent plan for 12 cycles of chemo. It sounds like you may be having Folfiri or Folfox? Please don't worry about the little chemo pump. It's surprisingly easy to get used to. Were you given a little bag to strap around your waist or attach to belt? At night, some pop under their pillow or tuck into their PJ's. I wear it on my little belt or clip it onto front waistband of PJ's. In terms of managing the 12 cycles it may depend on which regimen you're on but I find Folfiri and Cetuximab relatively ok and it's keeping me well with no evidence of disease at the moment. I'm on chemo for life and so have had around 133 cycles or so as I have it continuously every fortnight. I do get side effects but have learned to manage these. I'd say I manage to live a fairly normal ish life (part from now as I've recently had a couple of tricky issues resulting in two separate week long hospital stays but that's another story! 😂) please feel freee to come back with any questions or queries. We're all here for one another!

Sending lots of love and hope you have a reasonable night,

Karen 🌻🌻🌻🌻🌻

Many thanks for your kind support, I just seem not to be coping very well with this ongoing illness.

Thanks again really appreciate.

@Train1

Lucy118

You’re definitely not alone @Train1 and it’s so much worse the second time. However there are lots of positive stories. Try taking a day at a time and enjoying all the good things. Try not to let it consume you. There is lots of support out there. Try the Penny Brohn website. There are lots of things on there which hopefully can help you to cope. Sending lots of love and strength :x::x::x:

Lirio345

Good morning @Train1, I am also sorry to hear of this progression into your lungs. Like Karen (@Baxter2) I am on permanent chemo, but if I am honest when I got a recurrence in my liver I found it so much more difficult to deal with than the initial diagnosis. It was then that I asked to be referred for counselling and this really helped me. Macmillan are offering six free counselling sessions (over the phone) in conjunction with BUPA (you don’t have to be a private patient). Alternatively if you have a Maggie’s centre near you, they are also excellent.

Your feelings are so normal but getting some help would probably be a good move. Take very good care, Kim :x::x:

Baxter2

Good morning @Train1

You are coping really well with what is undoubtedly a life changing diagnosis. You're getting up every day, putting one foot in front on the other and moving forward with your treatment. That's an achievement in itself! Sometimes this is all we can do and is ok. Please try not to be hard on yourself.I would absolutely agree with the above suggestions for contacting charities and organisations to help. I'm not sure I'd cope if I hadn't accessed 1:1 counselling at Maggies, various relaxation and other groups there and can highly recommend Penny Brohn too. They really do help. I have my ups and downs for sure and have to re-visit some of the past stuff I've learned about coping. I've been struggling a bit both physically and mentally over the last few weeks which Ive found challenging to cope with but I've got through and am working through it as best I can using the support around me. That's the best I can do for now and it's ok. You're certainly in good company here as we've all and continue to work hard to overcome the challenges that a cancer diagnosis brings particularly at stage 4.

Enjoy the sunshine and have a wee think about making contact with someone who may be able to offer you some helpful support.

Lots of love,

Karen 🌻🌻🌻🌻🌻

Jane39

@Train1
I am so sorry to hear of your news.
I too also found recurrence much harder to cope with and understand how you are feeling.
You’ve had some great advice and urge you to seek support in a way that feels right for you.
I really hope that the chemo is kind to you and gives these lung mets a completely blasting.
Keep us posted to how you are getting on.
Take care
Jane :x::x::x:

Train1

Hello. Jane

Many thanks for your kind words, really appreciate.
I just found this 2nd occurrence so difficult to cope with having been told for the past year that I was doing well with my recovery from Bowel Cancer and coping well with a Permanent Colostomy.
Then to be told that I now will have 12 Cycles and not been told what the future holds other then being told the Average Survival times .

I just need time to digest the information and probably then calm down and seek some Counselling as has been suggested on this forum.

Thanks again really appreciate.

@Train1

pingu14

Ho @Train1
So sorry to hear of your reoccurance.
It definitely is harder to cope with the news when you have been recovering so well.
I was diagnosed as stage 4 end of last year and was so anxious of how well I would manage more chemo (i really had a bad time on other chemos)
But I have just completed my 12th cycle of folfiri and panitunimab and I can honestly say I manage it really well. Minus the chemo weekends I live a normal life.
It seems daunting thinking about each cycle but you can do it! Just take it a cycle at a time and be honest with your team about any side effects, don't suffer in silence.
Wishing you all the best :x:

Train1

Hello @pingu14

Many thanks for your kind support, I have just had the 1 Cycle of 12 last week.

I know it’s going to be a long road, what with the Permanent Stoma Bag and other related issues it’s difficult to cope.

Thanks again really appreciate.
@Train1

louise28

this is very hard @Train1 and I am sorry you are in this position.... I think it is v hard to look ahead and deal with the uncertainty...for me its the hardest bit. I would guess that we all find it hard, but as Karen and Kim and others show, you kind of adapt over time and find boys of coping. I guess what I would say is that its likely youll have a scan after 6 cycles...at least when I have spoken to my onc and also got a second opinion they said usually there would be a scan after 6, then if agood response you may have a break or keep going etc, so I would maybe ask about this. So much can happen with chemo and my oncologist has told me that they just cant say what will be possible until they see the scan and markers etc. The other thing is that i was told that while some people stay on continuous chemo (and there are many of those amazing folk here) its becoming more common to do 6 cycles then a break until progression or new disease etc, as they haven't shown a huge difference in terms of outcomes. I'll caveat this by saying I'm not medical and my guess is different medics differ on this perspective. I would have more of a chat with your onc about what is ahead though as it may suit you to have a better and clearer timeline :x::x::x:

louise28

hi @pingu14 hope oyu are doing well. im sorry to hear you're on the chemo train too but then also glad you're coping well :x::x::x:

Train1
Quote from @louise28:
this is very hard @Train1 and I am sorry you are in this position.... I think it is v hard to look ahead and deal with the uncertainty...for me its the hardest bit. I would guess that we all find it hard, but as Karen and Kim and others show, you kind of adapt over time and find boys of coping. I guess what I would say is that its likely youll have a scan after 6 cycles...at least when I have spoken to my onc and also got a second opinion they said usually there would be a scan after 6, then if agood response you may have a break or keep going etc, so I would maybe ask about this. So much can happen with chemo and my oncologist has told me that they just cant say what will be possible until they see the scan and markers etc. The other thing is that i was told that while some people stay on continuous chemo (and there are many of those amazing folk here) its becoming more common to do 6 cycles then a break until progression or new disease etc, as they haven't shown a huge difference in terms of outcomes. I'll caveat this by saying I'm not medical and my guess is different medics differ on this perspective. I would have more of a chat with your onc about what is ahead though as it may suit you to have a better and clearer timeline

Many thanks for your kind support really appreciated.

@Train1