Hi there

Hi Walkingthroughfire

That's good to hear that you're doing well with your pain under control and no other symptoms.

I can't help with what happens next as I had a different type of cancer but I noticed that you hadn't had any replies to your post yet. Responding to you will 'bump' it back to the top of the discussion list where it'll stand more of a chance of being seen.

You could also post your question in the ask a nurse section of the online community and one of the specialist nurses will aim to respond within three working days. If this is something that you'd like to do just click on the link I've created.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment so far 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.

x

Hi walkingthroughfire, 

I can't really help with you an answer, although I do think alternatives are out there if all other options are exhausted . 

My dad was diagnosed with stage 3/4  pancreatic cancer on Christmas eve & is going downhill quite fast, he is due to have his PICC line fitted next wk with the intention to start Folfirinox the following wk, im worried how he will cope so if you have any helpful tips I would really appreciate that. 

Hi there,

my Dad had Folfirinox following his Whipple a couple or so yrs ago- its a tough regime, the gold standard if you like and the one most likely to be the most effective. Though due to its strength, it packs a punch with a good number of side effects too. Everyone is different with their response, it can be tweaked if the dose is too strong and not well tolerated. Or if the side effects are hard to manage. 

Take it a cycle at a time and gauge response, scans with will be factored in along the way to check progress. Folfirinox isn't usually given to somebody who is considered palliative, or too unwell to tolerate it,  it may be that they want to just try it and see and go from there. Keep the team updated should there be any concerns.

I do wish your Dad, and you luck- the close family members are all greatly impacted and make great advocates and support. its far from easy, just get as much info as you can.

Let us know how he gets on x

Hi Van life

As Onelove3 has said, Folfirinox is effective but it is tough. But they would not have suggested it if they didn't think he could cope.

My experience was that the oncologist was very happy to adjust the dose to make it bearable. I had 9 ccycles and I don't think I had the full dose for even one of them - but it was effective in shrinking the cancer.

My cancer is not operable (ie it is terminal) and they were happy to give me chemo. Thanks to that I have had at least an extra year to be with my family. I hope the same goes for your dad.

Tips - just take it one cycle at a time, expect to be tired (especially after two or three cycles). Try to get out for a little walk - especially if the weather is good - and take all the anti-sickness etc drugs they offer!

BTW has your dad been prescribed pancreatic enzyme replacements (brand names include Creon, nutrizym, Pancrease, Pancrex)? If not, you should ask about this as it will help deal with weight loss due to not absorbing food properly.

All the very best x

Thank you, I will do. X

It's great news it worked to shrink your cancer, I'm really hoping for the same results for my dad.

He has started creon, but he says he just doesn't feel like eating, but now going to try some soup, see if that helps, it's so hard to watch.

Wishing you well x

Hi Today is day 1 in my journey Im sure everyone living with cancer can remember back to their day 1. No understatement to say that im terrified bu trying to be brave positive and realistic all at the same time. At the moment in too scared to read all the chats and pages as its a journey into what looks like an uncertain future. Im juts hoping that having only felt off colour since new year that ive given myself a chance by getting in early

Hi @Turboprop

Just to say well done for posting and yes we've all been there. You must still be in shock now, give yourself time and do what you need to do. Some people like to read up on everything. I couldn't even bring myself to get beyond the first few pages of the information booklet they gave me at the hospital. I'm assuming your diagnosis is pancreatic cancer, it is a tough one, but being brave, postive and realistic sounds like a good way to appraoch it. (and just remember there will be days when you don't feel any of those things, adn that's OK.)

With all best wishes xx

Hi, my dad was recently diagnosed & it is a roller coaster for sure, I read everything but he would rather not know, I'm not sure which is better, take a day at a time & try to stay strong, I believe a positive mental attitude helps but there are times that will test you. 

Best wishes x