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5-FU and in combination Levoleucovorin

Teresa0287's picture
Teresa0287
Posts: 6
Joined: May 2017

hello, has anyone here had these medications for 6mo treatment? Any tips or pointers?

mozart13
Posts: 118
Joined: Nov 2016

I am on folfox right now, those 2 drugs plus oxilaplatin.

It takes me about 5,6 days to recover, after infusion, therapy is every 2 weeks, not very many issuess, sensitive to cold, thats oxilaplatin, low energy, thats 5fu and oxilaplatin combined, but still manage to walk twice a day, average 45 min., than fall asleep, appetite is good, no nausea, they give me before infusion dexamethasone and zofran pills to prevent nausea, and it works.

Good luck to you!

 

Woodytele
Posts: 163
Joined: Apr 2017

i have the same experience as Mozart, recovering from fatigue takes a while,  i think you are better off walking or excercising as much as you can, it helps in a number of ways. 

EissetB
Posts: 135
Joined: Apr 2017

We're all have the same experience as we sounds like have the same drugs. I always make sure I have my gloves sticked on the fridge for easy reach. I had pair of gloves with magnets. My hands get so sensitive on cold stuff, then get numbed. Be careful on handling anything cold. Check your port surroundings for any bruise or things like it. I recently had an issue with the bruise around the port all the way to my armpit. It was painful for 46 hours. I didn't know I had massive bruise from the infusion, the needle slightly moved while the nurse taped the needle securely to my skin! You will know it 'cause it is painful!

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Agree we all are experiencing similar side effects.  I'm on my 10th treatment 2 more to go.  In addition to what everyone else shared I've also had nose bleeds in the AM and PM, hair thinning, stiffness in hands that make buttoning and fine motor skills very challenging.  No knife cutting for me! Eek! The other side effect from the neuropathy which I didn't expect was balance issues.  I trip, fall and bang into things which my onc said was related so I am very focused when I walk/run. Fortunately, the "chill days" after the infusions have only lasted two days which include the weekend so I binge watch/catch up on shows then back at it again.  Hang in there!  

Teresa0287's picture
Teresa0287
Posts: 6
Joined: May 2017

wow thank you so much for the information!! do you think it makes a difference what stage you are or your CEA levels before treatments start? is everyone getting the 6month duration also? (2 days a week of home infusion for 6 months) I am not sure if the oxiplatin is included i will ask tomorrow, is that the only one that causes the cold intolerance? thank you again so much for your replies!!

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

The Oxaliplatin is administered by infusion at the chemo center.  And yes, I think that its the Oxi that causes the cold sensation, as well as the jolting sensation when you eat (and a 100 other side effects). 

The 5FU comes with its own set of side effects. Everyone is different, so I wish you the best. 

I was on 5FU pump for 2 days after my Oxi infusions for six months; and then 24/7 for six weeks during radiation. Being hooked up everyday for six weeks was not as bad as I had anticitpated. In a way, it was better than the 42 hour deal. 

Good luck as you head into this journey. 

TRU

zx10guy
Posts: 266
Joined: Dec 2013

Leucovorin is a folic acid which from what I remember is used to enhance the effective time 5FU is active in your body.  It's used when receiving the bolus shot of 5FU in the clinic.  When my oncologist pulled 5FU bolus shot due to how my blood counts were presenting, he pulled Leucovorin as it wasn't needed at that point.  When I went through chemo treatment back in 2013, there was a shortage of Leucovorin which I was concerned about.  Fortunately, I was able to get it when I needed it during my treatment.

EissetB
Posts: 135
Joined: Apr 2017

Just like you, Teresa, I am on 6 months therapy, 12 sessions on FOLFOX. I have stage IIIc. Tomorrow is my 3rd infusion, it should had been done last Friday but due to a massive bruise along my port all the way down by my armpit the oncologist cancelled the scheds and moved it to the next Friday which will be tomorrow. Are you on your second treatment? 

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

FOLFOX is one of the common combinations for Colon Cancer, and it was my drink of choice for 6 months, not that I drank it Laughing

I wrote a bit about this in this thread:

https://csn.cancer.org/node/309103

Also if you click on my profile, I wrote as I was going through it.  Will try to get back a bit later, need to get ready for something I need to do shortly, but wanted to reply with some things that could help

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