Hi, new to this forum. I've been in denial as I've coped quite well and haven't accessed any support or discussion groups.
I was diagnosed in July 2023 after losing a stone and half and upper abdominal pain. The GP's were far too laid back and I had to take myself off for a private CT Scan and then the shock. I'm now 65 and was fit. It's in the head and wrapped around the stomach artery.
I had 6 treatments of Folfinirox from late August 23 til December 23. Which stabilized it. Then was offered to have SABR radiotherapy in Oxford.
This was very good and stopped it growing. In as much that I found a Professor in the Royal Free who attempted a Whipple last September 24.
But unfortunately this failed as they found some live tissue around the artery. Lost my gallbladder, and dietary has been a nightmare ever since. Lost another stone and still not gained it, with the nightmare fats issues.
So now there is some new activity, more in the artery than the Pancreas, and I have just had 2nd chemo of Abraxane. So really this is to ask of others experience of this one. Getting diarrhea and generally zonked out a bit, although for 2 hours it seemed much easier that the Folfinirox all day and a pump home for 2 days after.
Any sharing would be great thank you!
Hi libbeach and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m sorry to read that you have new activity connected with your pancreatic cancer and it must be a worrying time for you.
The online community is divided into different support groups so I'm going to recommend that you join the pancreatic cancer group, which is a great place to ask questions, share experiences and get support.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi libbeach
I'm sorry to read about your reaction and it must be a very difficult time for you.
The best way to find out if others have had this reaction is to join the pancreatic cancer group mentioned above as you'll then connect directly with others who have this type of cancer.
I've included the link to the group again here for you. Once you've joined you can start a new post in the same way as you did here.
Wishing you all the best and if you have any difficulties finding your way around the community just reply to me and I'll be pleased to help.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
