Treatment starts on Friday - Info appreciated

I was on 5FU pre surgery. It gave me terrible fatigue where I'd just lie in bed staring out the window. I was on radiation at the same time and it also causes fatigue so I'd certainly expect that. That was all for me. I didn't lose any hair or get nausea or anything else, just the fatigue. It's a little different for everyone, though.

Good luck and welcome!

Jan

I had the Radiation and 5FU and it hit me hard, so be warned, the following is not pretty. 

I had an uncontrolable bowel, and couldn't make it from the radiation center to the house without soiling myself. I was so grateful for DEPEND underwear, and suggest you buy some, just in case.

And the pain was the most horrific I have ever experienced. Well, thats not quite true, as I had a C-Section without anesthetic and that was bad (to say the least), and the pain from radiation was equal to that, except the C-Section was over and done with, whereas the radiation went on and on and on.  The only way I can describe it, it was like having child birth contractions, day in and day out for weeks. 

I did lose my hair to the point of looking like Gollum from Lord of the Rings, and so I shaved it off. I was never bald, bald, like breast Cancer patients. Just sprogs of random hair sticking out of my head. 

I slept and awful lot. I would fall asleep while talking. Sometimes I would have to crawl around, because I had no energy whatsoever. 

I had awful radiation burns and the skin around my bottom and down my inner thighs went black. I suffered from open, weeping sores. I also had this weird senstation where I couldn't bare the touch of clothes on my skin below my waist. Even thinking about it now, makes my skin crawl, and I also got a real taste for going commando, which I do to this day. 

I was really blessed to have a member of the forum private message me, and warn me about the extreme side effects that can happen. If I had not known, I would have been very frightened by what was happening. 

So, I basically had the extreme side of radiation side effects, but for the most part, others do not go through as much trauma. 

As for the 5FU, I had 12 weeks of that along with oxaliplatin before radiation, and found that being hooked up to the bag for six weeks straight was not bad at all.  

I did get severe neuropathy during radiation, and while they say it is caused by the Oxi, I was at least eight weeks out from that when I got it. My hands and feet went purple, and I suffer to this day from neuropathy in both hands, legs and feet.  So, keep a keen eye on that, becasue you need to catch it before it gets too bad. 

As for tips, keep out of the sun, and when you do have to go out, wear a hat and long sleeves.  

Drink lots and lots of water to keep hydrated.

You may get really cold, inspite of the weather outside. Its a cold that comes from the inside out.  It was 106˚ F one day, and I was shivering under an electric lap blanket and a quilt.  I LOVED the electric lap blanket. 

A Sitz Bath was a Godsend.  Warm water feel so good.  

I had to live with friends during radiation/5FU as I live 170 miles from the big city, but I wished I had had a Bidet. I have one now, and think that it too, like the Sitz Bath, would have been a great help. 

Your appitite may tank but it is important not to lose weight because it changes the placement of the tatoos or stickers that they use as guides.  

I wish you all the best as you move forward.  Remember, most people don't suffer so much, and hopefully you will be one of those lucky ones. 

Tru

I'm new to this myself. One treatment to date. Everyone here knows what's running through your mind right now. God, family and our new friends here will guide you through it all. 

Lan53 said:

Jan,

Jan,

 

Thank you so much for the response. I am trying to be strong and hoping to work at least half days if possible. I guess I will know soon. The radiation oncologist said the radiation side effects will be a few weeks out. I will hope for the best and try to stay positive.

 

Take care,

Lana

That's true, it doesn't start right away. But it also linger for a couple of weeks after you've finished treatment.

Jan

Kzzararat said:

Jim,

Jim,

I was diognosed with Stage 4 colorectal back in 2016.  I had radiation, surgery to remove my rectum and place an iliostomy (temporary thank God!) and then 6 months of Chemo.  With each step came different chanallenges.  Take it as it comes, don't over think things.  Have a good positive attitude!

A few things I didn't see mentioned in the other stories was the

- Cold sensitivity, drinking a cold drink was actually very unplesant and eating ice cream out of the question.  Of course I had my treatement in the dead of winter so I wore many pairs of socks to play in the snow with my daughter!

-  neuropathy, tingling in your fingers and feet.  This is a side effect of chemo.  I was very concerned with this but it has gone away with time.  My feet are still somewhat numb but it doesn't affect me badly. 

- Curly hair, I did loose much of my hair, but when it came back it was curly.  This was a pleasent suprise for me!

I hope all goes well for you! 

He's going to be on 5FU, not Folfox, so there shouldn't be any neuropathy.

Jan

Trubrit said:

Not too sure about that, Jan

I didn't have neuropathy while on the FOLFOX, but it appeared when I was doing the 5FU and radiation. 

Tru

Oh, really? That's the first I've heard of that. I thought it was always the oxaliplatin that did that. Wow. I stand corrected.

Jan

JanJan63 said:

Oh, really? That's the first

Oh, really? That's the first I've heard of that. I thought it was always the oxaliplatin that did that. Wow. I stand corrected.

Jan

It may still be the Oxi, and I just had a very delayed response.  I know that my Oncologist told me it was the Oxi, but he couldn't understand why it started three months after I had finihed the FOLFOX. 

Now, my own thoughts on this, are.  My 5FU pump failed one night, and I went eight hours without an infusion - I think I was getting it pumped every 30 seconds. When I got it fixed the next morning, at the clinic, they started pumping it ever 5 seconds to make up for the 8 hours I lost overnight and THAT is when the neuroptathy started. I think I was getting way too much 5FU at one time. 

So, make of it as you will.  

I guess the moral to my little story is, get the pump fixed as soon as it stops, just in case. 

Tru