what to expect with 5FU chemo treatments??

[worrieddaughter]

My mom is starting her first round of chemo next week and is concerened about the side effects. she is stage 4 with mets to lungs. She is going to be on F5U I think. she's really worried that going every 2 weeks for 6 months means that she will be sick for 6 months straight. can anyone tell us what side effects to expect, how long they last and what life is like after you start chemo? We had so many plans for camping and such this summer and now she feels like she'll be too sick.

[jenfer71]

While everything affects everyone differently, I didn't have it too bad with the folfox+avastin that I did. The worst part was the sensitivity to cold. I did have some nausea but it was bearable. My life for the most part stayed the same. I was able to do most everything I did before chemo. Your mom will of course need to be extra careful in the sun. Hopefully she'll have minimal side effects and be able to enjoy all those camping trips you guys have planned. Best of luck...

[wendy1]

I'm sure that your mom's oncologist has told her all the side effects that are possible. That doesn't necessarily mean that she will have them, everyone's different. I was on 5FU and although I did have quite a few side effects I pretty much did most of my normal things. I continued to work, just less hours. The worst part was the tired feeling as the chemo built up in my body, so I just took it easy when I felt like that. Your mom just has to listen to her body, it will tell her what she feels up to doing.

[Shayenne]

I am on Folfiri with Avastin, and go home with the fanny pack, for 48 hours, and the first time I had it, I was sicker then a dog, the anti-nausea meds weren't working well on me, so they gave me Emend the next time, with Dexamethasone, and ever since that, it's been so much better..make sure she gets good anti-nausea meds, I usually go every other week, like, every other Wednesday, and then a home health nurse comes to my house and unhooks my pump for me on Friday, I then feel very tired for about 4 days after being unhooked, but then I feel myself bouncing back to me again, just as soon as you feel better, and energetic, it's time for the next treatment! But, I also do have hair thinning, my onc said I wouldn't lose my hair on Folfiri, but I'm not so sure about that now, clumps of hair have been falling out on me, though I have alot of hair, you can't really notice though, that's about the only side effects I've had so far...also, once they first start infusing the 5fu, they make me suck in ice chips or a popsicle, which is supposed to reduce the chance of mouth sores, and so far that has worked, I haven't gotten any mouth sores.

[Nat]

I've only had 2 rounds so far, my 3rd one got cancelled this week due to low white blood count and rescheduled for next week. So there's the uncertainty of that to deal with. As for side effects, I haven't experienced any nausea and the onc even reduced my anti-nausea meds for next time so we'll see how that goes. I got the tingling/numbing during the second round and had to avoid anything cold for about a week, my onc reduced my chemo dose so we'll see if my neuropathy is any better for round 3 (although I think this is due to the oxi and not the 5FU?). The fatigue really hits me for the few days after my bottle is disconnected and then it gets better but I do feel quite sleepy a lot of the time.

All in all I feel pretty good so far, I've been taking it easy this week and not trying to do so much. If I were to make plans to travel or anything I'd do it during the non-chemo week, hopefully your mom will do well and get to do her camping on those days

[MattFoley]

I have completed 5 rounds of FOLFOX + Avastin and it is likely that will be your mother's protocol. Fatigue is a factor. I do my treatments every other Wed. and that weekend after I am a little spent, but by the next weekend I am camping and feeling a little better. However, don't have her make the mistake of cleaning fish in cold lake water. The cold sensitivity can be a little bothersome. But all in all I have continued to work as usual. Good luck.

[eltorretta]

Hubby had first treatment 2 weeks ago. He was great. We were out and about all weekend, fanny pack in tow.
Started roound 2 yestersay and has not been able to get out of bed. He is not in any pain, no fever, no nausea. Just tired. Awake and watching tv in bed, dozing on and off. Did get out of bed for dinner. Big difference from first round. From what we have read here that is not unusual.

Best of luck to you

[Miimizewithattitude]

First and foremost it is likely your mother is going to go on FOLFOX which includes 5FU and Oxaliplatin also being at stage iv I would be asking about an additional drug called Avastin. Of course this will depend on numerous things including age and state of health.

The side effects are over rated for MOST PEOPLE. I am at the end of FOLFOX 6 treatments and frankly if I bought into all the fear and comments one hears I might have had more problems.

Most people have mild side effects and I beleive a lot of it comes down to attitude. If your mum thinks she will be sick and tired she just exsacerbate the usual side effects. The attitude must be GET ON WITH it and do whatever you feel like.

Exercise lightly, eat regular small meals. drink a lot of water at least for a few days after the treatments. This is a huge help 3 litres a day.

Make sure she takes the anti sickness tablets they are called ZOFRAN in Australia.

Remember attitude. Don't focus on it. Have the treatments and live as normally as you can.

[eltorretta]

Hubby bounced back for the most part today. If a day and a half of sleep is the worst, we'll take it.

His only complaint is a little pain in his throat. Says it feels like his glands are swollen (but don't seem to be) when he first starts to eat. Is this common?

Linda

[hannahw]

Is it possible fear is the biggest side effect? The list of side effects is imposing, but as with most drugs, most people never experience most of the side effects. Lots of the effects are listed not because they are common but because they are possible.

One thing I've learned with my Dad, cancer is a marathon, not a sprint. No matter what happens, don't panic. Assess and adjust. If the first treatment sucks, there are probably things that can be done to make it more manageable. It's important to listen to your own body and not be afraid to tell the docs and nurses what's going on.

[worrieddaughter]

Hey, I know the nurse at the chemo place said that one of the more common side effests is mouth sores, but that they can also be in your throat. Is your husband rinsing and swallowing (since it can be in your throat as well) club soda or salt water after everytime he eats? You may wanna get it checked out, I'm not really sure to be honest. Maybe you could call and ask someone

Hubby bounced back for the most part today. If a day and a half of sleep is the worst, we'll take it.

His only complaint is a little pain in his throat. Says it feels like his glands are swollen (but don't seem to be) when he first starts to eat. Is this common?

Linda

[worrieddaughter]

Thanks everyone for your replys! My mom had her first chemo today and she feels great! Just some hot flashes and cold flashes and a runny nose. Hoping it stays that way. (always the waiting game) REALLY hoping that this goes smoothly cause that would give us something positive to work with. When can we go "phew we're in the clear for the side effects" Like if she still feels great in a couple days can we claim success?

[John603]

Worrieddaughter,

I think you'll need to wait longer than a few days to see how chemo goes. Early on the pre-meds are still working and make you feel better. I always got diarrhea in my second week (off week). Additionally chemo is cumulative so with each treatment the side effects can worsen. Hopefully your mother is one of the lucky ones who can breeze through chemo.

[Terry]

I will be getting my 3rd round of chemo on Monday. Here's how my week goes. I'm on oxi and Avastin every three weeks and I take Xeloda (pill form of 5FU for 2 weeks).

Day of chemo and next day - feel fine, energetic actually (from the steroid they give you)
Day 3 not so good
Day 4 even worse
Day 5 the worse
Day 6 a little better
Day 7 Almost back to normal
Next 2 weeks a little tired

Also for the first week and a half I have the cold neuropathy.

They give you an antinausea drug in the IV that last they say up to 4 days. If I were her I would start taking her antinausea drugs (either compazine or Zofran) today and take it as directed (every 6 hrs) on the dot to avoid puking in a couple of days. I was so sick after my first round. they gave me compazine and it wasn't until the day before I was throwing up that I got a prescription for the Zofran and that was to late to head it off. I now start the Zofran on the 2nd day and take it as directed. I also take Gas X because I get really full of gas and have terrible gas pains the first week. She may also have some diarrhea and I'm sure her doctor told her she could take Immodium. Oh yeah, it's fun, but she should feel better next week.

I'll pray for her.
Terry

[worrieddaughter]

Unfortuantly my moms feeling good was too good to be true. The day she had her pump taken off she began to feel horrible. She had 2 spouts of diarreha, threw up from the smell of supper and has been sleeping since yesterday afternoon, getting up only to eat a cracker, have a little drink, or go to the bathroom. I hope this gets better soon, my mom said if this is her life for 6 months shes not doing it. Thats pretty tough to hear, but if this lasts more than a day or 2 I can see why she would feel that way. Everyone is out camping and golfing this weekend and she hasnt moved from the couch. This really SUCKS!