Folfox and PICC line question

Hi Elb123 and a warm welcome to the board. There’s a great post below which will hopefully answer all your questions

community.macmillan.org.uk/.../positive-experience-so-far---for-those-new-to-picc-and-folfox

Thanks

Hi E, they give you a bag which I wore around my waist (I’m quite large but it was plenty big enough).  You just take it with you for each treatment.  

hooe your treatment goes well!

cerysm

Hello Elb123 

Your situation sounds similar to mine, except I don't have a stoma. I take a bum bag with me to chemo to put the pump in, which works perfectly because you can also wear it to bed without worrying about rolling over on to the pump. I find it doesn't get in the way at all. I barely know I'm wearing it. 

They will feed the tube from the bottle up your top and down your sleeve to attach to the PICC line. This stops the tubing from snagging on things. Then if you use a bum bag there is only a tiny bit of tubing on display where it comes out the bottom of your top to go into the bum bag.

Wishing you all the very best on your journey. I'm currently on cycle 7 of 12 of Folfox.

Thanks for replying Cerysm. That’s good to know that they provide something. I hoped they would. 
I’ve got a start date now in just under 2 weeks so fingers crossed it goes ok. 

Thanks JayH1. That’s really good to know about the tubing and it not affecting sleep. It’s all the unknowns which are causing me anxiety at the moment. I have a new starter appointment next week which I’m hoping they’ll give me more of the practical information then.  
Wishing you all the best on your journey too.

You're welcome Elb123 

I completely understand the anxiety of the unknown. There will seem to be so much to take in at first, but just do the best you can as it may be difficult to remember all the side effects they might mention ... and nobody is likely to get them all or severely. I made notes about the most important, such as keeping an eye on my temperature and if I'm not sure about anything I look it up. They'll probably give you a fair amount of literature to read, if you've not already been given it, plus you'll have access to the hospital 24 hour oncology hotline if you have any fears or questions, so you won't be left alone with nobody to ask. I'm now on my 8th cycle of Folfox and have only had to phone it once and that was only because I had a cold.

I can honestly say the Folfox journey has been a lot easier than I could ever have imagined. I think those new to chemo can tend to assume it's going to be dreadful without knowing any better (though I suspect other chemo regimes may be harsher on the system than Folfox). None of it is painful and the pump is no trouble for the short time one has to have it attached. You can't feel anything from it. Just remember to take anti-sickness meds exactly as prescribed, even if you don't feel sick.

I was talking to another patient on Folfox at chemo last week, who was also upbeat and didn't really have any bad side effects, apart from tiredness on certain days and possibly something minor. There will undoubtely be some but they can be mild.

Thank you for your good wishes, and the same to you. Please come back and let us know how it goes. Best of luck. x