timescales for side effects: Folfirinox

Hi Peppersmum

Side effects vary with different people so it is very hard to answer this question.  My husband's experience was that he was given steroids for a couple of days after the infusion and felt OK. Then felt very tired for three or four days and then it was time for the blood teat and more chemo. He wasn't sick with it. There are very good anti-sickness pills. Also the hospital will probably have a back up phone line.

Hope all goes well.

Squeaky

Hi Peppersmum

My mum has now has two rounds of chemo.  Folirinox.  The first was, apart from some tiredness, very good considering.  The second hit her a bit harder, quiet and tired.  She has lot some weight but seems stabilised now.  

We were told that the first reactions will be fairly consistent but I also read that it will also be cumulative.  

Dr said after 3 the cancer symptoms should start to improve.  If its working.

FYI we were to allowed to stay very long.  Covid rules.  Hope you can though.  Be lovely support.

Best of luck

WDITx

Thanks for the replies, both. 

Mum didn't want me to come with her - the journey to hers is a couple of hours - and she wanted me to save my visits for when she really needs them, which nearly broke my heart.

He chemo was on Wednesday and she felt OK up until yesterday, I think, but she's feeling very weary today.

I guess it's going to be a long road.

Thanks for your support.

peppersmum (so much for anonymity in my original post! :-) )

HI Peppersmum

Feeling out of sorts today is probably usual. Your mum was probably given steroids to take for a few days after treatment and that would perk her up but then she won't feel so good after they stop but she should feel better by the weekend - and then it all starts again.

Just keep on, keeping on.

Squeaky

Mum had a severe reaction on Monday/Monday night and went into hospital on Tues morning. Extreme, explosive  diarrhoea, and she has a urinary infection. She was sounding much better when we spoke last night, though, and we hope she'll be let out today with a care package of some sort for a couple of weeks.

It's going to be a rollercoaster, isn't it?

I'm looking at getting some help around the house for them, and will be going down tomorrow to chat it over. Dad is basically blind with macular degeneration and has poor mobility, and let's say that house work was never his passion!.

What a pair they are!!

Thanks for your support here. x

Oh how I feel for your Mum! That happened to me with effing Folfurinox, she will get the hang of using loperamide but it is so debilitating. 
don’t worry about the dust, just don’t let anyone write their name in it, that’s just rude :-)

I'm sorry - I just accidentally flallged this to the moderator, when I meant to hit the react button!! Ooops! Sorry, Lady Aga and Moderator. :-(

Thanks for this, Lady. Why do you think I plan to visit if not to write in the dust?! :-)

Seriously, the help I think they need - and they may disagree - is more around cleaning the kitchen and bathroom. Maybe bed changes and hoovering. We'll see. Dusting isn't an issue with all the clutter around! ;-)

I am hopeing she gets the hang of the meds. She may have a delayed second cycle, to allow her to regain strength. And the Dr is talking about reducing the dose on the next cycle. We'll see.

I hope you are well and hanging in there.

I am, thank you. Bed changes and the cleaning help will make a big difference. My dose was reduced after 6 and was much more tolerable. 
best of luck x

Sorry, I mistake pressed the reports to moderator button on your post. Don't know what to do to rectify it.

Hi Hilary

I started Folfirinox back in December and could only manage 3 treatments before having to go onto Gemcitibane (sp?) And Abraxane. I lost a load of weight because I wasn't eating and I wasn't eating because the taste and smell of food changed. I ended up vomiting because of the lack of food. I had no energy. However, after just 3 treatments the primary tumour in my pancreas had shrunk by 30%!

I've been on Gem/Abraxane since March and it's not working too well. Although my secondary tumours haven't grown and there's no spread elsewhere, the primary tumour has now grown to 10cm, 2 cm bigger than when I was diagnosed in November. So, from tomorrow I'm back on a modified version of Folfirinox. Oncologist told me it'll be a combo of 2 drugs instead of 3 and a lower dose although when I spoke to the chemo nurse yesterday, she said 3 drugs have been prescribed but lower doses.  I'm preparing myself for the same effect again.  

Christine x