Advanced pancreatic cancer with liver lung and adrenal gland metastases

[Wifey55]

Hi, I’m interested in hearing from anyone who has experience of the journey of advanced pancreatic cancer months on from diagnosis. My beloved hubby was diagnosed in December and told he had less than 6 months without treatment but if chemo worked that could be improved to 12-18 months possible even 24 months. He has had 6 rounds of FOLFOX between Jan and March and a further scan end of March. In this time we have worked hard to manage symptoms and he feels well, all pain is managed with zamorph, bowel movements are back to normal, he eats 4 meals a day with tons of creons, has put back on any weight lost and is now stable at his normal weight with few if any side effects from the chemo. We have a near normal life with planned in rests for his afternoon naps. We really thought we were going to be the miracle.

Saw the head honcho yesterday and scan showed some reduction in tumour in pancreatic tail and some reduction in some of the tumours in the liver. Lung metastases stable. We thought this was all brilliant news and we’re expecting a revised prognosis. Head man said he should have another 6 rounds of the same chemo but this might need to be changed if the drugs started having more side effects eg oxyplatin might lead to irreversible numbness if fingers and toes after 4 months. Head honcho said the prognosis of 12-18 months suggested previously by his deputy was rather optimistic and 10 months was the average.  Whilst we understand everyone’s different and timelines are arbitrary and only averages, we know we have to take every day at a time, count our blessings yada yada. We do have some real questions for anyone who’s been there or supported someone through this.
Our questions are

how does the second round of 6 Chemos differ from the initial 6 - greater side effects etc?

what happens after 12 sessions of folfox - will health deteriorate 

what are the signs that health is deteriorating 

Are we being too optimistic to plan a holiday in September- should we bring that forward whilst he’s feeling well.

any insights on what we can expect 3 months from diagnosis ie now to 10/12 months on from diagnosis. Does it all go south quickly?

[Lee W]

Hi Wifey55,

I can't speak for other sufferers of pancan, but my symptoms (jaundice) first appeared in late November 2021 I was diagnosed with borderline operable Adenocarcinoma of the pancreas in December 2021 I had 8 cycles of Folfirinox chemo in an attempt to shrink the tumour before surgery, but after the 8th cycle my body rejected the chemo which caused difficulties with my heart, my oncologist immediately halted my chemo and referred me to Queen Elizabeth liver department at Birmingham in August 2022 for a whipple procedure, the whipple ultimately failed due to cancer having completely surrounded and invaded my portal vein, two months after my failed operation my oncologist changed my chemo to palliative, I now have a chemo regime of single agent Gemcitabine for three weeks and then a week free of chemo, the Gemcitabine is nothing like Folfirinox in my case the side effects are few the biggest being that my feet are constantly cold and numb and I have a lot of tingling in my finger tips but 17 months after my initial jaundice I am still here and loving life, I can't do many of the physical things I used to be able to do because I get tired really easily, but I'm still here with my family and still feeling relatively good, I had been prescribed Oxyplatin and then Oramorpth for my pain but neither worked without spacing me out so now I just take Tramadol which works for me, In early March 2023 I was also diagnosed with type 2 diabetes my GP tells me this is due to the damage my tumour has caused to the insulin producing part of my pancreas, I have been prescribed a drug named Metformin for the diabetes, as for individual life expectancy who knows? I thought I would be dead within three months of my initial diagnoses but I'm still here and able to give my wife and son a hug and tell them how much I love them everyday, stay strong even through the bad times and pain your husband knows you are there for him.

[Support Team]

Hi Wifey 55,

 

Thank you for reaching out, this sounds like quite an overwhelming time for you both.  Please do not hesitate to touch base with the specialist nurses on the support line as this might be helpful for you to discuss some of the questions you are asking about chemotherapy and also about managing expectations. 

The nurses are available on freecall - 0808 801 0707 or via email - nurse@pancreaticcancer.org.uk.

 

Kind regards,

 

Administrator,

Support Team,

Pancreatic Cancer UK