(CAPEOX) capecitabine-pill vs. 5FU IV

shu273
shu273 Member Posts: 44 Member
edited June 2023 in Colorectal Cancer #1

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.

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I took it a couple of summers

    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

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    CAPOX

    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
    shu273 Member Posts: 44 Member
    JanJan63 said:

    I took it a couple of summers

    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

    CAPEOX

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

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    shu273 said:

    CAPEOX

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

    .

    Let us know how it works out.

  • shu273
    shu273 Member Posts: 44 Member

    CAPOX

    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.

    CAPOX

    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

  • Princey
    Princey Member Posts: 17
    capox

    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.  

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    shu273 said:

    CAPOX

    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

    Side effects

    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.

  • ColonCancerPartner2019
    ColonCancerPartner2019 Member Posts: 5
    edited April 2019 #9
    how to choose?

    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
    OnTheRoad Member Posts: 31 Member

    how to choose?

    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!

    I am also a 3b and have

    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
    shu273 Member Posts: 44 Member
    OnTheRoad said:

    I am also a 3b and have

    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

    CAPOX

    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

  • shu273
    shu273 Member Posts: 44 Member

    how to choose?

    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!

    He referenced the IDEA STUDY

    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

  • ColonCancerPartner2019
    ColonCancerPartner2019 Member Posts: 5
    edited April 2019 #13
    shu273 said:

    CAPOX

    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

    sharing another doctor's opinion

    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
    shu273 Member Posts: 44 Member

    sharing another doctor's opinion

    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

    Keep us posted on your progress

    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!!!!

  • kremkat53
    kremkat53 Member Posts: 1 *

    It appears that I’m late to this party as the last discussion was in 2019. Nonetheless, Capeox vs Folfox is the topic I’m interested in, and I hope there’s more current threads.

    My husband was dx with stage 2b esophageal cancer last April and was treated with radiation and chemo. He was not a candidate for resection. Now the cancer’s recurred in a lung, along with node involvement, and the recommended treatments are Capeox or Folfox. He’s starting Capeox later this morning, but is wondering if he made the right choice. I was interested to read that several folks here switched from one to the other.

  • kblairj
    kblairj Member Posts: 21 Member

    My husband just started on Xelox (Capeox) for Stage IV colon cancer 2.5 weeks ago. I can't really answer your question, but I am also interested in what others have to say. I read a lot of people do well with the Capeox, but my husband is having a difficult time with nausea and no appetite, so also wondering if we made the right choice.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member

    Once you make the choice, second guessing has little value, unless you are looking to change strategies. Everyone is different, some do better on one approach or another, but from my perspective the advantages of Capox outweigh Folfox. Hopefully, others will chime in.

  • Capox Dude
    Capox Dude Member Posts: 122 Member

    just make sure your oncologist knows what’s going on. Never suffer in silence as they can often prescribe some thing to help. In no event lower his dosage or stop his dosage without talking to his doctor, no matter the side effect.

  • Emmanuel89
    Emmanuel89 Member Posts: 16 Member

    My son was diagnosed with stage 4 colon cancer with liver mets and nodules on the bottom of his lungs. He is 34 years old and was diagnosed 16 months ago. He had a colectomy and started with FolFoxIri plus bevacizumab for nearly a year (infusion thru port every 2 weeks). After 2 CT scans it was determined that the nodules in his lungs were resolved and the mets in his liver had shrunk to +35%. After that, his oncologist felt his body needed some rest (the side effects were strong at that point) so he took away the oxaliplatin. After a couple of months, he also took away the irinotecan. He is now on infusions (thru port) every 3 weeks of bevacizumab and leucovorin and 2 weeks on and 1 week off of Xeloda (pills). The side effects are tolerable with the worst being neuropathy and hand-foot disease. He prefers the pills, he is an ER nurse and works full-time. It has been hard on his feet and hands though. When he was doing the infusion only, the worst side effect was diarrhea and anal pain and itching and he hated that because it was debilitating. We have a meeting with the oncologist tomorrow so we'll see what he says about neuropathy. He is on palliative chemo and we are not too happy about that, I want the tumors to keep shrinking so he can be a candidate for liver resection even though the oncologist said he would never be a candidate. We are requesting a surgeon referral.

  • Capox Dude
    Capox Dude Member Posts: 122 Member
    edited April 2023 #20

    I would absolutely not follow the suggestion of your oncologist regarding surgical matters before you went to someplace like MD Anderson or Sloan Kettering to get a top notch cancer/liver surgeon to give an opinion on the viability of surgery in your son’s case. Now, your oncologist may be right. In my journey, I refused to follow the opinion of my local surgeon who wanted to do a 16 inch Chevron incision and resect a portion of my liver. I went to MD Anderson. Long story short, there was no need for liver surgery and three years later no sign of cancer in my liver.

    I feel that I ducked a bullet by getting a second opinion at a facility with a little bit more expertise. There is no downside for you to do the same

  • Emmanuel89
    Emmanuel89 Member Posts: 16 Member

    thank you for your response. May I ask if the surgeon didn't think surgery was necessary then you continued with chemo? If so which?

    We finally changed oncologists (same hospital) and he sent a referral to the surgeon. Surgeon and team decided he was a good candidate for a liver transplant or an operation where they basically "burn" the mets. They think a transplant would be better but i am a bit scared of that option. The burning method is also pretty invasive and it might not work.