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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

TraceyJ61

Starting new chemo regime Irinotecan with 5fu and folinic acid (FOLFIRI)

Hi everyone

Following my recent ct scan which has shown an increase in tumours on liver they are changing my chemo from oxiplatin and capecetabine to folfiri via pic line and pump. I still have a lot of pain in hip with bone mets so have been referred to local hospice for pain control.

First of all am worried about pic line being inserted. Does it hurt? And being home alone for a few days on a pump? Does anyone have any advice how to manage this?

Tracey :x::x:

Gill1111

Hi I have a pic line and you can’t feel it at all
The bottle you are sent home with is with you for 2 days a little uncomfortable but manageable

Good luck x

Gill

Gill1111

I never felt it being inserted either
Stoop worrying go with it :x:

GD62

Hi @TraceyJ61

Got one in had and have no problems so far and it's more convenient. Good luck with Folfiri :x::x::x:

Baxter2

Hi @TraceyJ61

I've never had a Piccline but have had a Hickman line (inserted into chest) and had two portacaths. I had them inserted unde local anaethetic and was fine. You feel pressure and tuggingbut it's not painful.

I also have a 5fu pump for 46 hours after main chemo infusions and it's easy to manage even overnight. Please don't worry about either.

For me, Folfiri and Cetuximab worked very well and I've had quite a few cycles now!! Let's hope it's really effective for you too!

P"ease give me a shout if you want more info or pm me!

Sending lots of love,

K💙💜💛💚❤️

jinnyp

Hi @TraceyJ61, I have had a PICC line for about 8 months now and it hasn't been a problem at all. You can get a cover to use in the shower (think it's called a Limbo and you can get it in prescription - should be free) I didn't feel mine at all going in - the nurse was very good at distracting me and it was much better than I expected. As far as the pump goes you just need to pop it in your pocket, it's quite small, or a bum bag or similar. The only issue I had with mine was catching the tubing on kitchen cupboards so make sure you tuck it away :)
Good luck with Folfiri, a lot of people have had good results with it :x::x::x:

Polly68

Hi @TraceyJ61 I'm having my third picc line and chemo started this week. They inject a local anaesthetic into the inside of your upper arm before they put the line in and I have never felt it being put In place. The first line I had was great and I had no problems at all, the second line was in a slightly different position and my muscle kept trying to push it out, so they had to be careful when doing a line flush to try to keep it in place. The only real issue I had was that the sticky dressings used to cover the line caused my skin to become sore, but that's probably just my skin being a bit sensitive. I found having the bottle ok and at night I would tuck it into the elastic arm bandage they use to cover the dressing, that way I could move around and didn't worry about laying on it or getting tangled. I believe a picc line is better for your veins and it gets the chemo into your system quicker. As an aside, I found FOLFIRI side effects easier to manage than FOLFOX, but I do understand we all cope differently. Good luck with your new treatment 😊 Paula :x::x::x:

Gill

Hello @TraceyJ61 I started with a PICC line and was on FOLFIRI as well. PICC line being inserted was no problem (quite interesting in an anorak sort of way....) I had a problem with the sticky dressings as well and they made the skin sore. I now have a Portocath in my chest which I've had for a year. That was inserted under General Anaesthetic and I find it much more convenient and means no problems with showering etc. I also have a pump for 48 hours afterwards. You get used to it, but you do have to be careful not to snag the line! I have had problems with the pump in that it doesn't always empty completely. I've overcome this by trying to keep it raised. So when sitting or lying down, I prop it up higher. Hope you get on okay. It'll be fine when you get used to it! Gill :x::x:

Bear G

Hi @TraceyJ61
Good luck for all of this, please try to view this treatment as a really positive thing for you, your chemo is your friend and ally! It’s there to help you.
The PICC line will help protect your veins and reduce irritation so it’s a good thing, it certainly helped me so now (years later) it’s easy for me getting bloods taken and infusions.
Like you, I was worried about the 5FU bottle but you soon get used to it, so long as you tuck the tube away when you’re wondering around you’ll be fine, I caught mine a few times which was unpleasant but nothing more than that. I even went to a friends wedding with my bottle tucked into my suit pocket!
Big hugs
Bear
:x::x:

Polly 1

Hi @TraceyJ61 my husband is on his 4th PICC line now (over 5 years) and having one does make infusions easier. He tells me it dosnt hurt to have one inserted or removed. He says you get used to having the pump attached for 48 hours and it dosn't bother him at all.

He had Folfox the first time then just 5FU and this time Folfiri/Cetuximab. Folfox was by far the worst. With the Folfiri he has an atropine injection before each infusion of Irinotecan which helps.

All the best :x:

TraceyJ61

Thanks to everyone for your really helpful replies. Am having pic line inserted tomorrow and start chemo on tues. am feeling less anxious about it now. :x::x::x:

Polly 1

Yes dont worry @TraceyJ61. All the best :x::x:

tigercub
Quote from @TraceyJ61:
Thanks to everyone for your really helpful replies. Am having pic line inserted tomorrow and start chemo on tues. am feeling less anxious about it now.

Hi Tracey61
How are you getting on with your treatment I think it might be same as I'm having soon

TraceyJ61

Hi @tigercub sorry for delay in replying not been on here a while. Pic line went ok. After local anasthetic didn’t feel anything. Am aware it’s there and the pump gets some getting used to but it’s only 42 hours do not bad. Having a shower is difficult as plastic sleeve have been given is difficult to put on. Have just had 2nd round and feeling ok just tired. Day 5 start with diarrhoea but been given loperamide which helps. Hair has started to come out though. So on in all not as bad as Oxaliplatin and capacetabine tabs. Hope you go on ok :x::x:

tigercub

Hi Tracey 61.
Glad you're ok with picc line .I had plastic sleeve called limbo which I got on line cost about £13 doc wouldn't prescribe it that's ok to put on the ones hospital gave me are no good .I am starting chemo again tomorrow don't have picc line they said they can do it without one .I was going to have pump thing at home but oncologist change his mind not having now having capectabine tablets.irenotecan and campto don't know if spell right.said might lose hair hope I don't but no good worrying .are you going get wig or hat scarf good luck on your treatment

tigercub
Quote from @TraceyJ61:
Hi @tigercub sorry for delay in replying not been on here a while. Pic line went ok. After local anasthetic didn’t feel anything. Am aware it’s there and the pump gets some getting used to but it’s only 42 hours do not bad. Having a shower is difficult as plastic sleeve have been given is difficult to put on. Have just had 2nd round and feeling ok just tired. Day 5 start with diarrhoea but been given loperamide which helps. Hair has started to come out though. So on in all not as bad as Oxaliplatin and capacetabine tabs. Hope you go on ok

Hi Tracey 61
Also do you feel sick on this treatment and are you getting pain in hands and feet

Clancy

Hi @TraceyJ61, I am on the same Chemo that you are going to start. I have mine through a portacath which was put in under local, I never felt a thing. I too have the take home pump attached for 48 hours, it is quite easy to get used to, the only thing I don't do is attend my Yoga sessions for two days. @Bear G is right, embrace this new Chemo as your ally. I tend to focus on thoughts of good health and the things I am still able to do and for that I am so grateful. I do,however, get the stomach cramps during infusion of Irinotecan at the Chemo unit. I had the Atropine injection and it stopped. If it helps, I also take the anti sickness, as prescribed, and do not wait to feel sick. Hope this helps, do keep us posted.:x::x:

TraceyJ61

Hi @tigercub reading on here not everyone loses their hair it just thins. But my hair is fine anyway so any hair loss shows. Am sitting here now contemplating getting head shaved tomorrow. Have bought a couple of turbans online ready and am going to wear scarves. Am considering wig for my daughters university graduation in july though. Side effects only 2nd treatment so far but feeling ok. Like @Clancy I did get stomach cramps with first infusion but they gave me the atropine injection and all was ok. Managed without at 2nd infusion. The soles of my feet are tender but I massage cream into them every day. Sickness has not been too bad have been given ondansetron for when I feel sick but haven’t been physically sick. Thanks for advice re limbo sleeve will take a look. The one hosp gave me feels too tight and am scared of pulling line out. Thanks @Clancy for advice re sick tabs. I will try that as have just been taking them when I feel sickly. :x::x:

tigercub

Hi Tracey 61
Thanks for advice I see from time of your post you also awake early.my hair dark and fairly thick so It may not notice too much.ive just had it cut short and colour put in .my feet still bit painful from first chemo so might not notice any difference.for anti sickness I had domperidome think that's how it's spelt .but I was never sick .for limbo sleeve you need measure arm as it comes if different sizes can't remember name company hospital gave me details

Polly 1

My husband is on Folfiri/Cetuximab and had his 18th last week. He has had Folfox and just 5FU in the past.
He was given a 'pre-prescription' form by the chemo nurses to tell his GP which Limbo sleeve to order - yes they measured his arm and although 'snug' it works well and he is able to put it on/take it off himself
He didn't lose his hair on Folfox but did this time. He is still on fortnightly treatments but his hair grew back - it is more wirey and curly than it was though.
He hasnt been sick so far but takes the prescribed Ondansetron. He has the Atropine injection each time just before the Irinotecan infusion. They didnt the first time and waited to see how he reacted but as soon as he got some cramping they injected it and he gets it every time now.
He massages Aveeno into his hands and feet every day.