New to this forum advice needed

Sorry about your diagnosis, but now you've got it, might as well enjoy the ride. 

Advice?  Lots of it, so a little at a time from me. 

Good old FOLFOX. The Oxaliplatin is a harsh chemo, and you will notice a few side effects straight away. Other side effects will come on gradually - I hope.  The first you need to be aware of is sensitivity to cold. Get yourself a pair of thin gloves and keep them by the fridge. Actually, keep them handy, becasue it can get as bad as just touching the door handle will give you a shock. 

The first bite mouth shock was a real surprise to me, because I had not been warned. Sometimes, when you first put food in your mouth - right after infusion - you get an electic shock type sensation. It goes away once you bully through the first bite. 

Take those anti nausia meds, they really work.

Tingling in the extremities. The minute you feel this, make sure you let your Oncologist or the chemo nurses know. Don't let it get bad. 

The port is (can be) absolutely a God-send. For the most part, everyone gets on with it well, and it saves your veins. 

Well, there's a start for you.   Others will be along soon, to share their thoughts. 

Again, I welcome you to the forum, and look forward to getting to know you, and helping you along the way. 

Tru

SandiaBuddy said:

Chemo

For many, surgery is the easiest part of the process and chemo is the worst.  You might benefit from searching FOLFOX on this forum and reading some of the complications and recommendations that have been posted.  Some do great on chemo, some do not.  My philisophy is always to hope for the best and prepare for the worst.  Best of luck to you.

I was diagnosed in april of 2016 with Stage IV rectal cancer with mets to the liver.  I started out with pelvic radiation then followed that with 14 rounds of folfox with avastin.  I had some side effects like the cold sensivity, neuropathy (still have it) nausea, constipation, and general malise.  I also had problems with low blood counts and had to have 7 pints of blood last summer.  I am now on Folfiri with avastin and it is better than the folfox.  The side effects are nausea, no desire to eat, constipation ( most people have bad diarrhea )  I also suffer from a lot of pain due to the radiation damage to my rectum.  The chemo works well keeping the cancer in check.  I was told initally that I was inoperable and had about 2 years left with treatment.  I was able to have two liver resections at MD Anderson and with the ongoing chemo I am stable with a very low disease load due to a reoccurance in the liver.  

In any case, my advice is to talk with your oncologist about ANY side effects and questions you may have.  You have to be on top of things and self advocate.  If I had just accepted what the docs initally told me I would be dead by now.  I kept looking for surgeons to operate on my liver and finally MDA said they could.  I would not have been sent their by my local docs but I told them I was going for a second/third opinion.  It is your life and you have to monitor everything because the docs are overbooked and will follow traditonal protocals for treatment without spending a bunch of time on your case.  I figure since I pay for their services they need to answer my questions and help me keep up with my disease and treatments.

Wish you the best and I hope you will continue to post and ask any specfic questions that come up during your treatment.  Folks on here can share our experiences but we cannot offer medical advice. 

Tim

I was lucky with my FOLFOX treatments.  I didn't have any vomiting whatsoever. Sensitivity to cold is a real thing, buy yourself some bottled water and whatever else it is you like to drink and sit it on the counter. You will not want to drink anything cold for a while. It feels like a million razor blades are going down your throat.  I used winter gloves for taking things out of the freezer and fridge.

The side effects of FOLFOX are cummulative. The first couple of treatments you probably won't feel anything except the cold thing. You will start thinking "Oh this isn't so bad" and then they hit.  Just know that most of them fade and you will feel normal again before your next treatment.

You will end up hating the bag... I know I did... 

Tell your doc if your hands and feet start going numb. They can reduce the amount of oxypilatin without harming your treatment.

EAT even if you don't feel like it. Your body needs the fuel to get you through.

That's about all I can think of right now...  EXCEPT  Chemobrain is a real thing..  Don't freak out if you can't remember your name...

Be strong, be determined, and I wish you much luck.