My husband was diagnosed with PC last august 2025 and long story short was eligible for Whipple surgery but needed 6 cycles of folfirinox before but needed to have 12 because ca19/9 levels even though where reducing but still very high 4000! We where having the surgery st an alternative hospital due to the veins involved where the tumour was . In between this the hospital where the surgery was being done requested an MRI after 9 th cycle , we arrived at our local hospital for results and honestly up until the week before we where told it hasn’t spread and tumour is stable , so we where excited in the fact that surgery was in the distance.
arrived at oncology to be greeted with a new oncologist you just sat and delivered the terrible news of “ you wont be having surgery it is on liver and stage 4 palliative” ! No compassion no support with the stern young nurse absolutely nothing!
I spoke to our CNS who was away at this appointment, and requested a referral to the hospital where the surgery was going to take place to see their oncologists and see what treatments can be offered because we feel that we just been left high and dry ! I have researched and researched everything that could be offered but it is so hard to get the correct one. I feel the statistics of PC are so low but are they really giving us the best possible treatments or is it “one size fits all” and you are pallative thats it!!
I will PUSH and PUSH for anything that could help my husband live longer and wont leave any stone unturned!
if anyone is in same situation please give me some positive news .. or advise… I getting frightened
I wish I could give some positive news but we're in a very similar situation to you unfortunately.
My husband had suspected pancreatic cancer at the beginning of September and, after two biopsies, was given a definite diagnosis at the end of October. Like your husband he was given FOLFIRINOX to hopefully shrink the tumour away from blood vessels that it was too close to. We were told that he had a 33% chance of it shrinking, a 33% chance of it growing and a 33% chance of it staying the same. Unfortunately he fell into the last category.
The three monthly scan revealed that chemotherapy hadn't shrunk the tumour, although positive news was that it hadn't grown or spread in this time. He was told this by his oncologist over the phone a couple of weeks ago and we won't be seeing him in person until the end of the month. He will be started on GemCap as soon as possible after that. I'm not sure if the GemCap might shrink the tumour or if it's just to keep him stable.
Obviously it was devastating news that FOLFIRINOX hadn't done what was hoped but we're trying to keep going with life as best as we can until we see the oncologist in a couple of weeks. The plus side is that my husband isn't in any pain and the side effects of FOLFIRINOX have largely gone now.
Let me know how you get on
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Lee/Mellee07
My husband has just started the new chemo regime that I mentioned in my reply.
When we saw the consultant he said that although the tumour hadn't shrunk it had only grown slightly, so that was a positive. He gave my husband the choice of immediately starting the new chemo or having a tree month break. He felt that either option would be fine. My husband decided to take a break.
At the end of the break he had another scan and again the tumour had only grown by a millimetre or so but more positive still was that his tumour markers had come down significantly and there was no sign of spread.
The consultant hasn't entirely ruled out surgery but it will only happen if the new chemo regime shrinks the tumour away from the blood vessel.
That's great news that your tumour did shrink and you were able to have surgery and are now cancer free.
Wishing you all the best
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
