Folfirinox - what should i expect

[jsbach]

Hi all, I was moved onto Folfirinox today after show no signs of responding to the Gemcitibine. Having gone through what's involved and the possible side effects with the oncologist, I was wondering if people could share their experiences. One of the big questions I have, is how do you sleep during the 46hr iv period.I am getting the port fitted. I have this worry sitting in the back of my mind that I will toss and turn and rip everything out. Some of the side effects seems pretty extreme. I know that different people get different side effects, but if anyone could share their experience and any thing they did do help relieve them it would be most appreciated. Take care everyone Tim

[wombat4]

Hi jsbach, Although I have no exp with Folfirinox, my wife was on Folfox with the iv port for the 2 days, every 2 weeks, 48 cycles in all, and she never had any probs with sleeping through that time while the iv was connected, It was put in her right side and she slept on her left side. Good luck wombat4

[wombat4]

Hi jsbach, Although I have no exp with Folfirinox, my wife was on Folfox with the iv port for the 2 days, every 2 weeks, 48 cycles in all, and she never had any probs with sleeping through that time while the iv was connected, It was put in her right side and she slept on her left side. Good luck wombat4

[jsbach]

Thanks Wombat. Folfox is the stuff, just a different way of naming it. The drug combination is Oxalipiatin Leucoverin Irinotecan Flouracil (the 46 hour one) cheers Tim

[wombat4]

Hi Jsbach, Good luck with the new regime. By now you would have been given the handouts on possible side effects, its worth remembering not everybody gets them. One of the things to watch out for with the oxaliplatin is the neuropathy, which is the tingling in hands and possibly feet, your oncologist would ask you about this every time you visit. The tingling can also be brought on by changes in temperature, so be mindfull of air cons in cars and shops, keep your hands out of the freezer, and if you can out of the fridge as well. Cold drinks with ice are a no no. Keep a pair of gloves with you in case you have to handle something cold.If you keep these sorts of things in mind you may lessen the potential side effects. The first night of the cycle it was difficult for my wife to sleep because of the uppers ( anti nausea medication ) but on the 2nd night she slept fine. With the 5FU, on occasions her face would colour up, and feel hot, but this was only temporary and only last a few hours. Hope all goes well for you wombat4

[jsbach]

thanks wombat. well aware of the side effects and everybody is different. thought it wouldn't hurt to ask others experiences. thanks for sharing yours i get the port fitted tuesday and start the cycle on wednesday. many thanks Tim

[Stace]

Hi there I have a port in my right hand shoulder, i did the iv thing from home when i was having my three days worth of chemo, folfox was the one aswell! You get a cool little carry case (well in WA you do not sure about other hospitals and states) i would make sure i had plenty of cord hanging from the port and wrap it around the cassette in the carry bag and i would sleep on my back with the carry case on my stomach, i am lucky that i have always slept on my back so didnt really roll around, i think if you are worried, you sleep but you are still very aware that you dont want to rip anything out so tend to sleep in one spot does this make sense. Goodluck with it all, i had a continuous chemo for six weeks with radiotherapy at the same time, then the operation to remove my tumour then six months worth of chemo, i didnt find the neuropathy to bad but i made sure i didnt eat or drink anything cold or touch anything cold. A bit of advice for the shower, go to bunning and buy a hook that you hang pot plants on the hang the cassette on when you have a shower, i found that the best way, i would put it in a plastic shopping bag and hang it on the hook so i didnt have to worry about it getting wet. I wish you all the very best with your treatment. Kind regards Stacey