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(CAPEOX) capecitabine-pill vs. 5FU IV

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

Looking for anyone that has input on treatment with CAPEOX in pill form vs. 5FU over two day period via a take home pump. The Med Star Georgetown University Hospital treats with the CAPEOX pill due to the studies that have shown it to be more effective that 5FU and they only treat 3 months vs. 6. My husband would much rather take the pill form but we are looking for people with real time experience taking this drug to provide insight and advise. 

Thanks,

Andrea 

P.S. he is diagnosed with T3N1M0. Already had the surgery to remove tumor.

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

I took it a couple of summers ago. It did nothing for my cancer and I had almost no side effects other than sun sensitivity. But we're all different. For some people it's a life saver. I only had 5FU at the beginning, before my surgery, and never since. It was okay but gave me pretty severe fatigue. I don't know how effective it was, for some reason I wasn't told and didn't ask. I was having radiation at the same time so that might be the cause of the fatigue.

Sorry, I'm not much help.

Jan

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

That is great to know. I will take that information with me to the Oncogist tomorrow morning!!

SandiaBuddy's picture
SandiaBuddy
Posts: 916
Joined: Apr 2017

Let us know how it works out.

SandiaBuddy's picture
SandiaBuddy
Posts: 916
Joined: Apr 2017

Carrying over from your other thread, I tried the CAPOX.  I saw no reason in the world to do the port/pump scenario.  I hate needles.  I had one oxaliplatin infusion and I found the side effects unacceptable.  For me, the chemo was only supposed to give me a 10% increase in overall survival chances.  The capecitabine alone was supposed to give about a 7.5% advantage.  I then did 4 months of capecitabine only, and that at a reduced dose.  Capecitabine itself is not too horrible, but it is no picnic either. 

If you have not already had this conversation, you might want to have your doctor describe your husband's chances of recurrence with or without chemo, with a three or a six month course, and any other variations that you think you might consider.  Having these statistics in mind can help make a decision whether to engage in or continue a therapy easier.  

As for me, when evaluating the oxaliplatin, I decided I would rather have one good day off oxiliplatin, rather than 10 days on it.  Using that quality of life formula, I decided I was better off without it.  Fortunately, I am two years out from surgery with no current evidence of disease.

Also, be aware that there are many non-chemo strategies in which you can engage to optimize your chances of survival.

Cheers.

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

We met with our Oncologist today and he was ok with our proposal for the capox in place of the 5fu. We are doing the Oxilaplatin infusion also. He started today. Pills are 4 @ 500 mg/total 2000 twice a  day. So far and its only been six hours, he is already having jaw cramping and cold sensitivity from the Oxilaplatin. Feeling nausea and taking anti nausea meds. Thanks for your input and education and the fact that you have posted so much shows that you have helped so many people. Amazing! So greatful for you taking time to reply and help us.

Andrea

SandiaBuddy's picture
SandiaBuddy
Posts: 916
Joined: Apr 2017

The side effects are plentiful, and for me oxilaplatin was highly unpleasant.  Please remember that dosages can be adjusted.  There are certain people (I am probably one of them) that have a stronger reaction to chemo.  After such a bad reaction to oxiliplatin, I started on two 500 mg. capecitabine twice a day.  The highest I could get up to was two in the morning and three in the evening, but I backed off to two each dose because even five a day was too much.  If your husband reacts badly, you could talk to your doctor about adjusting the dosage.  Mentioning that you are thinking about quitting gets them much more flexible on dosages very quickly.

It is probably best to search through this forum for the various side effects, but please be aware of the possibility of "chemo brain," that is a fuzziness of thinking where it is sometimes hard to remember words, neighbor's names, and so forth.  Please be understanding if this happens to him.  It is a highly frustrating side effect to lose some of your mental acuity.

But hopefully all these cautions are for nothing and he will sail through the process easily, as some do.

And, even when it is difficult, from my perspective, remember that exercise helps with every side effect.  To the greatest degree he can, he should get out and walk as much as possible.

Best of luck with all of this.

Princey
Posts: 17
Joined: Sep 2018

My husband took capox for a month or so and it was terrible.  Nausea, diarrhea, and he lost a lot of weight rapidly.  He had to switch over to the 5fu and have a port installed.  He hates needles too.  Once he switched, he was fine.  Gained weight etc.  

ColonCancerPart...
Posts: 5
Joined: Apr 2019

Thanks for this post, as we are meeting with the oncologist tomorrow re my partner's Stage 3b diagnosis. It is so hard to know which one to choose - Folfox or Capeox... We actually met with one doctor at Medstar in this process as well and really liked them but the location wasn't convient for us for treatments. Did he give you any statistics about the effectiveness or comparison between the two that you can share? Success rates or pointing to any studies?  Thank you!

OnTheRoad
Posts: 14
Joined: Jul 2018

I am also a 3b and have finished my chemo (12 sessions of FOLFOX) a little more than 2 months ago.

I am not a doctor, but on the research I made online, CAPOX has a very slight better outcome than FOLFOX for disease free and 5-year-survival rates (of less than 1%) and has a higher toxicity than FOLFOX... So it is a kind of a tradeoff you also have to think about.

I also saw reports of people that simply could no tolerate CAPOX and had to switxh to FOLFOX and vice-versa

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

Thank you for your reply. We decided to try the Capox and are only 1 week in. So, will see how he progresses. How was your experience throughout your chemo and how are you now? Did you experience any Nueropathy and if so have those issues subsided? Also, did you ever experience your lungs burning when you exerted yourself (such as walking)?

Thanks,

Andrea

ColonCancerPart...
Posts: 5
Joined: Apr 2019

As I posted above, I thought I should respond with an update. We just had the appointment with the medical oncologist yesterday and asked about the two drugs, especially after reading about the IDEA study. The doctor (at Cleveland Clinic) recommended Folfox given the harsh side effects of CAPOX and increased toxicity, which can often result in hospital time. He said that it would be more of a discussion if my partner was lower risk as 3 months with CAPOX would be better for lower risk patients, whereas FOLFOX they recommend for higher risk patients. My partner had 6 nodes affected at Stage 3b so it looks like we will go with Folfox.  Again, this is just one update of a medical opinion so please do take with a grain of salt, I am sure your doctor knows best for your case, but I just wanted to share for other readers. 

Best of luck, and please keep us posted on his progress

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

Thanks for the update. Please keep us posted during the treatment. Some days Alan feels like a rockstar and other days he takes several naps because he feels very fatigued and sometimes his lungs are burning. We have been staying very busy working in the yard. I think it is good to have a project to focus your time and energy on. Thank Goodness for Spring!!!!

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

He referenced the IDEA STUDY and it shows a slight edge using the Capoex. We are only one week in to the treatment but so far so good with the pill form Capoex. We can always switch to the 5FU pump but so far so good. My husband did not want to have the pump and also the added risk of infection. Hope your appointment goes well. We had to push a little to get the Capeox and consider 3 months vs. 6 months they are working with us really well now. I think they get used to most people not questioning the plan for treatment that they choose. 

Andrea

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