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Stage 2A to Stage 4

Erica2016
Posts: 9
Joined: Oct 2016

Hello all,  

Long story short, I had rectal cancer in 2016 received oxliplatin and radiation along with surgery to remove the mass. I am now 33 and my cancer has returned with a two inch met to my liver. My doctor initially decided to start me on the same oxliplatin and xeloda which was the regimen I was previously on. I received my first round of chemo two weeks ago when my doctor decided to attack the liver met with Flofixiri, Oxliplatin and Avastin with hopes that the met shrinks after 4 rounds. With this treatment I am expected to have cold sensitivity and complete hair loss. Has anyone had any experience with Avastin and Folfoxiri? I will also be receiving a PICC line for the first time. What can I expect? Thank you.

Trubrit's picture
Trubrit
Posts: 4826
Joined: Jan 2013

I am sorry you have found yourself on this forum. Not really a place anyone wants to become a member of.  But, you are here, and we not only welcome you, but will help you along in your journey. 

I cannot help you with your chemo regime, as I was on FOLFOX, but I did have the extreme cold sensitivity and my hair, while it didn't fall out completly, got very, very thin - think Gollum -   There were several other side effects as well, but lets cross that bridge later. 

I know there are several members who have been or are on the Oxi and Avistan that can help and will be along soon. 

You are so young to be going through this, but your age will be a great help. 

Tru

 

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

But I did have FOLFOX in 2015 and I am now FOLFORI with Avistan, so things may be a bit different.

On FOLXFOX I had the cold sensitivity and lost body hair (but not completely and not around the mediport (not a PICC line in my case), so had manscaping each time they took off bandage Laughing) on FOLFORI I am losing some hair, mostly up top, but I had 12 rounds of FOLOX the first time (8 with Ox) and now 14 treatments in on FOLFORI (about 5 with Avistan).  I have not had the neuropathy or cold sensitivity on the FOLFORI.

Try to drink things at room temperture, be careful of opening the fridge (use gloves), have some slippers if you have cold floors.  Take small sips of drinks to start, some days are more sensitive than others and also small to start seemed to acclimate things a bit more for me.  Make sure to mention any neuropathy (and other effects) to your doctor.  

As Tru said, you are young which is a big plus.  If you have not had a reaction yet, that is a good sign that you will be able to get four treatments of that combination.   Sorry I could not tell you about the specific combination though.  

 

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

I'm sorry that this happened.  I've had the oxi with the FOLFOX but not the one that you will be going on.  The cold sensitivity comes from the oxi and I'm surprised you didn't get it the first time that you were on it because that is one of the biggest side effects from the drug.  Just be careful drinking or touching anything cold while on it.  Oxi is a cummulative drug so with more infusions the sensitivity will last longer and longer.  Wishing you the best in this new treatment.

Kim

Erica2016
Posts: 9
Joined: Oct 2016

I did have cold sensitivity with Oxi + Xeloda, but i was able to tolerate it. The combination of Oxi, Folfoxiri and Avastin at the same time is what I am nervous about. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Did they say that the combination would be worse? Or are you just worried it might be? I was on Folfox 4 years ago and the neuropathy was gradual and increased the more treatments I had. At four it wasn't too bad at all, but it's different for everyone. I'd assume it'll be similar to the last time you had it. I'm not sure about your hair falling out. Maybe because it's more than one chemo at the same time? I think most people don't lose their hair, just some. I'd expect some pretty good fatigue, though.

As for the PICC line, it's pretty easy. They freeze an area and put it in like a larger IV but with a little contraption where it meets the skin. They wrap it up really well. It was uncomfortable the first day after the freezing came out but it really wasn't bad at all. When they take it out it's easy. They take off all the tape and just pull it out. I honestly felt nothing and the line was about a foot long. I'm a big baby about things like this so if I say it wasn't bad, it really wasn't bad.

I hope it hits it and it's gone again!

Jan

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