Just diagnosed...

Hi Liberty72 and a very warm welcome to the online community

I'm sorry to read that you've been diagnosed with pancreatic cancer and, although I didn't have this type of cancer, I know what a worrying time it can be while waiting for tests and then treatment to start.

Hopefully you'll find this is a great place to ask questions, share experiences and get support. If you want to ask specifically about Folfirinox you could start a new post with a title something like 'experiences of folfirinox needed' and I'm sure the group members who have had this will help.

When you feel ready it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with 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.

x

Hi Liberty72

I am on the same treatment you are starting. Similar to you in terms of symptoms but I am stage 4 so incurable. I have having chemo to extend and not cure. (I am 56)

I was diagnosed in May and started treatment in late June.

The chemo journey is a highly personal one and I can only recount from my experience. I have really not found it too bad at all and have avoided the sickness. My condition (I have a duodenal stent because of the position of the primary tumour) means I take PERT (enzyme supplement) so my digestive challenges are greater that the chemo ones. I was terrified before I started the treatment (and I am not usually terrified by anything!) but I found the community I was around in the treatment area really helped - I guess only those going through it can really understand!

I tried to prepare for outcomes of the treatment by buying a wig etc but I have kept most of my hair in the 5 sessions I have had (as I am writing this I have a "flask" of chemo feeding my vein - part of the treatment which, again, whilst it takes a few times to get used to it - you do get used to it - its only in place, in my case, for 48 hours). That is a comfort because losing my hair, eyebrows and lashes was a big worry (daft thought that sounds!!)

I hope it goes well for you and keep talking to everyone and anyone that shares this journey with you. I find it really helps

Jenny x

Thank you so much Jennyx! I've done 2 of 6 sessions and it's all going better than expected. 

Sorry to hear the PERT is causing more challenges for you day to day. Knowing it's incurable my be playing heavily on your mind.

I am thinking through the very real risk that my surgery by be an open and close because the scans are not always clear. And my Doctor had warned me about this. I'm focusing on the positive side for now, being hopeful.

All the best to you Jennyx

Thanks. I hope it all goes well for you. Positivity is definitely the key to happiness just now!! Jenny x