Folfirinox and fatigue

[kittycat]

Is it usual to have severe fatigue for a whole week on this regime. Roger has had his 6th cycle and has spent most of the last week asleep. He goes to bed after breakfast, after lunch and then again after dinner before getting up to watch a bit of TV. The last cycle was about 3 days like this and other days just having a nap. Is this likely to get worse? It's no life and we will discuss it with the oncologist but I wondered if others had a similar experience.

Sue

[Carole McGregor]

Hi Sue - my husband Clive did become progressively fatigued after each cycle. Don't know if it was the cumulative effect of folfirinox. He had a break after 6 cycles and regained a lot of strength and began eating again. All seems to be a bit of trial and error with this particular chemo regime - we seemed to have different side effects to deal with each time. Best wishes to you and your husband. Cxxx

[alimc77]

Hi sue, I'm new to the forums. Glad I saw your post. My dad is really struggling with fatigue. He's on his 4th cycle and it has got worse every time. He's had h's dose reduced twice now and it's made no difference. Has oncologist app this week so will see what he says. My dad's a strong man and has been trying to carry on as best he can but he is just so tired all the time. It's very hard to see him like this.

Ali

[kittycat]

Thanks for your responses, it looks like Roger isn't on his own with this. He's been really bad again today and we should be travelling to London tomorrow for nanoknife but I can't be sure he's up to it. We've had to cancel once so I think it's now or never and just hope he'll feel better in the morning. I think in any case that folfironox certainly at this strength is not for him so we'll have to see what options are available to us.

Sue

[J_T]

Hi Sue, my husband Ray also suffered badly with fatigue. I'd say it was far and away the worst side effect of the chemo. He had only 2/3 'good' days before his next treatment. We had some good days out but unlike some others he was not fit enough to do normal stuff like gardening or decorating.

Hopefully Roger will begin to feel a bit fitter. I wish you both well.

Julia x

[kittycat]

Julia, this sounds just like my husband, he can't do much at all and it's fortunate that we're retired because he'd never be able to go to work. His chemo is to be reduced slightly next time, but he's just worn out that I don't know how much difference it will make. They seem reluctant to change his chemo but he can't go on like this.

Sue

[J_T]

Hello Sue, fortunately we too were retired! Ray had his Folfirinox dose reduced after the first treatment. It got rid of his pain so that was good and he did tolerate it better, but he was just so tired. We were grateful for the blue badge!

It's so tough. You want to have the best chance and the Fox is supposed to give you that but I do believe now that it doesn't suit everyone, how can it?

Hope you get to London for nanoknife.

Good luck

Julia x

[kittycat]

Hi Julia, yes, we made it to London and all went well so we're just hoping that it will have the desired effect. He has no more pain than before but he does have diarrhoea and has been advised to stop his antibiotics so hopefully that will clear soon. We managed to get out for a couple of hours today to the bowls club, just to spectate, but Rogers having to rest now but he has been better today.

Sue

[Slewis7313]

Sue, I had 10 cycles of Folfirinox and another 16 without Oxaliplatin. The last few months have been plagued with serious fatigue, which is quite debilitating. I have had to stand down from work for now as the fatigue was starting to effect my ability to stay on top of things. It is just sick leave at the moment and I hope my change in chemo to Gem/Abraxane will allow me to start work again at some point.

But back to the fatigue, it is really hard and I find myself going to bed several times a day (usually after eating). It is frustrating and stops me doing many things, sometimes not leaving the house for days at a time.

Hope this helps!

Steve

X

[kittycat]

Thanks Steve, sorry you're suffering so as well. Roger is just the same, worn out after eating and we're just hoping that this modified chemo will do the trick. I did ask about alternative chemo but they said that if he couldn't tolerate this one they would rather save any other chemo 'for later'. Not sure what that means and am a little concerned as he's just had nanoknife and needs the chemo to work with it. We'll just have to wait and see I suppose.

Sue

[J_T]

Good to hear you got to London and back safely and got the nanoknife! Onwards and upwards for you both.

KBO!

Julia x

[kittycat]

hi Julia, yes, things are much better this week, having a week of the chemo has made an awful lot of difference to Roger. Although he still needs an afternoon nap, he is feeling much better, his appetite is good and he is very optimistic so I can only hope that it continues. As you say, onwards and upwards.

Sue

[Sueoliver]

Hi Sue,

I am glad to read that things are a bit better. It certainly helps when they have good days doesn't it? Let's hope they continue.

Stay strong and positive,

Love Sue xxx