Hi.
I'm new here. I have recently been diagnosed with recurrent bowel cancer in the pancreas. My understanding is this is extremely rare. I am terrified as I am undergoing treatment but have not met anyone where the cancer has spread to the the pancreas. I have been told I can only have palliative care which is devastating, I just cannot get my head around everything going on right now and feel so down and alone. I do have a fantastic support network in my family but I just feel u I need to talk to someone experiencing the emotions I am right now. Any advice or stories much appreciated.
Thank you
Hi Jo R
Welcome to the forum . I am so pleased you reached out .
If you click on my user name you can read my mum’s treatment history with a stage 4 diagnosis. She has had it in a few organs . I think we all wrestled with the palliative aspect but found it easier to consider it a chronic condition that would require continuous intervention . We also decided her response was just as important to chemo as the location of the spread .
Bowel cancer has quite a few different treatment options compared to some other primaries .
https://www.bowelcanceruk.org.uk/about-bowel-cancer/advanced-bowel-cancer/treating-advanced-bowel-cancer/
This booklet covers the various chemo and targeted treatments available to the oncologist. They do seem to prefer treating systemically initially but thereafter they review and if possible add in other approaches .
To put that in context my mum had a significant spread that was no longer visible on her scans after chemo . It is very individual and whilst not everyone gets that response a sub group of patients seem to be able to stabilise their disease and you will see people on the forums using chemo in a maintenance setting for five and six years .
As everyone responds differently it can take time for the oncologist to tailor your treatment plan and evaluate how you respond but therein lies the hope as you really are a statistic of one .
In terms of getting a handle on the emotional aspects . Macmillan has teamed up with Bupa and offers six free counselling sessions . Our helpline staff can help if your interested or ever need to talk on 0808 808 0000
There is also buddy systems to give you some support and in person support has opened up depending on where you live .
I have just seen your post . No idea why my one word post went 
. But I would encourage you to think about asking a dietician to get involved . They can help guide you to the best foods to take . My mum lost three stones and I found that aspect quite hard work . We found milkshakes loaded with calories stopped it getting worse . We put scoops of ice cream and a chocolate bar in them . She could slowly sip it too rather than try to drink it in one sitting . Also added cream to mashed potatoes etc and a complan chicken soup to ensure nutrition .
I think there are also drinks that have protein added to them but the dietician will guide you .
Also remember your GP is part of your team . If you need help with the mental health aspects please reach out to them .
A lot of research coming through on exercise through treatment even moderate exercise seems to help . I will link in some information tomorrow as I know this is very overwhelming in one sitting to even read .
I think tramadol can cause some tiredness . I know it definitely can affect your emotions as I used it once myself .
Do you have a treatment plan yet ?
Take care ,
Court
Helpline Number 0808 808 0000
Hi Court, if you can send me some information please that would be great. Thank you so much.
I had a read of your mums story. It was so reassuring to read such a positive outcome. When you are told your incurable, you feel it's the end. I read it a few times and each time I smiled and told myself, there is still hope 
.
I start pembrolizumab next week. No chemo alongside it. Not sure if there is an option of chemo after or surgery. If it shrinks then that is good news.
I agree, looking at it a chronic condition does make you look at it differently. I had never thought about it like that before.
Looking at statistics, it says maximum of 5 years but I dont want to believe that. I keep telling myself 'I will beat this'. Its just seems surreal right now.
I am waiting for a call from the dietitian. Should be tomorrow so hopefully, I cant get some sort of supplement to boost my energy levels.
Kindest regards
Jo
This is the document on exercise . You might also like to approach your team about it too as there may be an NHS program in your area .
My mum is currently part of a research group who are looking into her longevity. They reported at Christmas that they have managed to capture a cancer fighting T cell killing a cancer cell . They seem to be looking at how to boost the T cells through things like exercise and music etc . That’s my understanding of it anyway .
Great you are using Immunotherapy . I will link in Moi2 as she been using it for a long time now . You also might like to look on her bio .
Bowel cancer has change considerably since my mum was diagnosed back in 2009 . No immunotherapy back then and very little funding for targeted therapy . Surgeons are also much more aggressive now . They continually review and take scans back to the MDT meeting to reassess . So the stats are very much a rear view mirror . Immunotherapy only really started being given the green light over covid in the U.K. . However I have been watching the progress in the US over the years . We instantly had to dismiss the stats as they were dire back in 2009 . My mum decided it was an eyes forward process not backwards and today matters as much as tomorrow. Keep pushing the boundaries forward and my mum is certainly doing her but for the stats . We really don’t know how treatments like Keytrunda will change them but it can only be for the better . Slowly but surely .
My mum also set weekly projects . Some she just oversaw rather than tackled herself but there was therapy in itself to see what she was accomplishing and felt it gave her small areas of control over her life again when she felt that slipping . I think it mattered !
Just remember my mum’s prognosis was dire at the start and less treatment options . She becomes a teenager this summer !
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It is a toe by toe journey for sure and the uncertainty scary but it might surprise you to know we have had many , many good times since which did not seem possible at the start ,
Great you are getting the dietitian involved . Get the help you need in as you want to only have to focus on your well being .
Remember you fluids too . My mum has a few hospital admissions as she apparently knew what her body needed and refused to keep her fluids up . Turns out her team knew better !.
Take care ,
Court
Helpline Number 0808 808 0000
Hi Jo r I hope your feeling OK THINK IVE REPORTED YOURS OR COURTS COMENT BY MISTAKE. Any way I started in Nivobulun in 2020 I've been stable ever since. So it's just part of my normal life .My side efects have been itchy skin and scalp, but have found products to make it hardly noticeable. I use Fairy soap powder, Avino moisturiser for my body Coal Tar shampoo. My sore mouth mouth wash, also warm salt water to gargal and Bongela. I ALSO EAT A GOOD DIET LOTS OF WATER. I KEEP ACTIVE BY WALKING AND DANCING. STAY POSÌTIVE. I wish you well 
Thank you for getting in touch Moi2.
I've read your profile. It's great your having such an amazing response to your immunotherapy! Fantastic news!! You are such a strong individual
The side effects you have described have also been explained to me. I've got everything prepared such as ointments, gentle detergents etc so let's wait and see. I've been told my treatment will be for a year with the possibility of 2 depending on results. May I ask, how long are you able to have your immunotherapy?
A few people have asked why I am not having chemotherapy alongside it but I believe with some immunotherapy, this is not nnecessary. Maybe later. I am hoping the tumour shrinks enough to have it removed later. This hasn't been agreed as yet but I am holding on to this thought.
Kind regards
Jo
Thank you Court. I'll have a good read and definitely take up your advice and tips. Hopefully will be sharing some good news in a couple of months time
