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New to this forum advice needed

nicktacoma's picture
nicktacoma
Posts: 11
Joined: May 2019

I have stage 3c colon cancer. I had large tumor removed (colectomy) and gallbladder removed on the 24th of April I will be starting chemo in 2 weeks FOLFOX for 6 months not sure of radiaton yet meeting with radiologist in 1 week 12 of 38 lymphnodes were positive for Cancer cells. Getting nervous port will be put in next week another full CAT scan next week also. Any advice would be welcomed I am a 56 year old male I work security for a Casino and will try to keep working if possible. 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

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's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

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.

LSU2001
Posts: 24
Joined: Dec 2017

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

Bellesouth
Posts: 11
Joined: Feb 2017

I think you'll be glad you came here: I know I am! Everyone is so friendly and helpful. I am a 56 y.o. Female diagnosed Stage 4B in June 2015. I think it's important to remember that chemo effects everyone differently and I've found that it effects me differently from one round to the next. My first chemo was Folfox 6, and although we did reduce the dosage midway thru, I did finish all 12 rounds and never missed a full day of work due to chemo. I'd go to work in the morning, go get my infusion and hateful 5FU pump and go back to work. So it's not always easy, but is possible. Yes, stay on top of the cold sensation in hands & feet and try to take frequent, small breaks where you can just sit alone & quietly for a few minutes. My office is quite busy, but I do have a private bathroom and had to take my "breaks" in there. Haha but it works. 43 men co-workers will NEVER question why a woman, especially one with bowel cancer spends so much time in the toilet.

Just try to take the treatments with a grain of salt and keep a sense of humor. Every day I tell myself, someday this thing will ruin my life. But not today. NOT today! Oh and get ready for your "new normal". There will be many changes to your body and even your life. Try not to dwell on them; many will not be permanent. Just know that change is coming so you won't be too alarmed or discouraged. It's definitely an adventure... 

AnneO1965's picture
AnneO1965
Posts: 35
Joined: May 2019

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.

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

Hello and welcome. Sorry you've found yourself needing the forum but you'll be glad you did.

Jan

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