Advice and guidance needed.

Hi and welcome to the board. Sorry to hear that you’ve had problems with the xelox - it’s not the nicest of chemos. I haven’t had folfox but I think Jersey Lily did so hopefully will see this post and be able to offer you some advice.

As far as picc lines go they are painless to have fitted and you should be given a plastic sleeve (or a prescription for one) to keep it dry in the shower. You won’t be able to play golf or tennis but I found it a godsend after struggling with the pain in my arm after an iv session.

Hope the folfox is easier for you

Take care

Karen x

Thanks Karen.

Had not even registered with me that the PICC would bypass the soreness in the arm. Bonus..

While the pain was not agonising for me, it sure hung around and, even a week later it's still a bit tender.

From your reply I am hoping/guessing that the PICC does not simply "move" the soreness.  Fingers crossed

. 

You’ll still get the usual potential side effects like the tingling when touching anything cold but my arm was so sore after the iv that I couldn’t even stand clothes touching it and I was close to tears when they tried to remove the sticky tape after my 2nd one  Had the picc line fitted and it was happy days. You may have to go to the hospital for the line flushing in between sessions but they also take your pre-chemo bloods out of the line so another less needle to suffer!

Hi @OddOsprey, I had a PICC line after a portocath failed. No problems at all with it & absolutely no pain either during insertion, afterwards or during treatments. It's a pain not being able to play tennis or golf & having to cover it in the shower but it's definitely worth doing. Are you having FOLFOX & 5FU? If so, you're given an infusion through the PICC line which takes around 2 hours, and then a pump which is attached to you for 48 hours - absolutely no pain but you can't shower with it. The infusion contains the dreaded Oxyplatin, which can cause an odd constricted feeling in your throat when you're having it - it never happened to me, but if it does they will stop your treatment & give you a warm drink before carrying on. I found that drinking room temperature water during the infusion really helped. It can also give you peripheral neuropathy - tingling, pins & needles and/or numbness in your hands and feet, especially when cold (or in some cases, hot.) No cold drinks or food for the first three days or so - definitely no ice cream. You may be given a pair of white cotton gloves that you can use to take in things out of the fridge/freezer. Wear a scarf & gloves & warm socks to and from your appointment & make sure you keep warm. You may also get clawing in your hands if they get cold. These side effects vary hugely from person to person, you may get nothing at, the whole shooting match or something in between. Forewarned is forearmed! I did 7 out of  planned 12 testaments before I had to stop due to low neutrophils. Talk to your oncologist about your symptoms and he/she will adjust the dosage accordingly. I had mild nausea in the first two days but took the anti sickness drugs as directed and managed to eat small meals & the sickness passed by day 3. Again, this varies from person to person. I felt very tired throughout the treatment and had to rest every afternoon, but everyone's different. I found that I felt pretty horrible for the first 7 days or so then gradually recovered so that I felt pretty much ok by day 14 - when the next treatment started again! You should be given a thermometer to check your temperature, you need to call your oncology team if you are unwell with a high temperature as if your neutrophils are low & you get an infection you can be very ill. It's not a pleasant treatment but as I've just had my first yearly scans and they were all clear I reckon it's definitely worth it. Message me for more info. Let us know how you get on! Good luck! x

Big thanks for taking the time for such a comprehensive response. Seriously appreciate it.

My uderstanding atm is that I WILL be having the 5FU as Well.

They originally tried me on XENOX but I had a bad abdominalnreaction tomthevtabs so They stopped it quickly. Hence the switch to the FOLFOX.

Even from just one infusion on the original treatment I got the cold sensetivity and the pins and needles. Still slightly there almost 2 weeks later.

The thermometer and temperature watching  I am aware of also.

I have also been building up an acceptance of tepid water to drink rather than straight from the tap. Plan on sipping that to try and eliminate the throat issue. May add some fruit infusions to the water to give it a bit of flavour.

Still waiting appointment for the PICC line to go in but guess it will be soon as I had appointment date through today for the 1stvsessipn of FOLFO X on  26th of this month.

Will keep peeps informed of my progress.

All the very best everyone!