Anyone has advice with advanced pancreatic cancer

Hi and welcome to the online community

I'm really sorry to read that your mum has been diagnosed with pancreatic cancer which has spread to her liver and lungs. Although I did not have this type of cancer I do know how hard a cancer diagnosis can be on the whole family, made worse by the fact that you can't visit her.

I noticed that your post hadn't had any replies yet and thought it might help to get some responses if you could tell us what sort of advice you're after. I'm including a link here to Macmillan's information on pancreatic cancer which includes a section on advanced cancer.

You might also like to think about joining the supporting someone with incurable cancer group which is a safe space to discuss your emotions as well as practical issues about palliative care. If this is something that you think might help then clicking on the link I've created will take you straight there where you can join and post in the same way as you did here.

When you have a minute it would be great if you could pop something about your mum's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Latchbrook,

Thank you for your message. I will edit my profile and visit the link you suggested.

I have "Metastatic Neuroendocrine Tumour of Pancreatic origin with Liver Metastases" which is basically pancreatic cancer that's spread to the liver; its classed as G3 (the worst). My treatment has been six cycles of chemotherapy on Capecitabine (1500mg) twice a day for 14 days then 14 days rest plus Temozolomide (400mg) once a day on days 10 to 14 of the 28 day cycle, with an anti-sickness pill (needed) an hour before.

The treatment was stopped after 5 cycles, as I started getting chest pains. at the end of January 2021.

On Wednesday (two days ago), my wife and I saw my Oncologist, with great trepidation, and, great news, no more chemotherapy! Instead I'm getting CT Scans every three months to keep an eye on the cancer - as it'll never go away, its just dormant, and , yes, the chemo is likely to start again, but we're been told the cancer can lie dormant for several years.

I'm writing this to let you know I've never felt better and in the hope of providing you with hope for your mother.

Best wishes to you all.

Thank you very much for your email, I really appreciate it. From what you have described it's almost like for like, including the medication, the sickness tablet. 

My only main concern is my mother sometimes doesn't eat properly for 3-4 days at a time and up until recently she used the morphium skin patch. Due to lots of sickness with this pain relief, she is now completely come off of it. 

Do you often find it is difficult to eat large amount of food? 

My mother is due to a CT scan in June and this will hopefully bring some positive results and that the cancer has been kept at bay. 

The thing with her illness which makes it more complicated due to this illness she has become diabetic type 1. 

Is this the same in your case?

It was great relief for me and my husband to read your message and to share your life with ourselves. 

Best regards