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Folfox vs Capox

Suern3's picture
Suern3
Posts: 2
Joined: Feb 2018

Hi, 

I just found you guys, I’m newly diagnosed stage 3c colon cancer, it was in my sigmoid and they were able to remove and reconnect without a colostomy. There was a lot of lymph node involvement but that’s as far as it got. Thankfully! I had surgery 3 weeks ago and so far doing really well. I was presented with 2 treatment options, Capox and Folfox. I probably will have to work as a nurse during, because I can’t take off for 6 months. I’m curious about which treatment you all have done, side effects bad? Did you get a port? The capox only has infusions every 3 weeks, so is it possible to not get a port? And what about hair loss? They said it can cause hair “thinning “ what does that mean?? Also what about weight gain??? of course I’m a little over weight now, but was hoping for weight loss, but that’s not what I’m seeing happens. Last thing I want is to have to fight with my weight during this too!

Sorry we have to be together on this forum for such a nasty reason.

Thanks in advance for taking the time to reply.

Sue

Tunadog's picture
Tunadog
Posts: 232
Joined: Mar 2017

I had CAPOX which is Oxaliplatin injected in a Cath Port (4-5 hours) and 14 days of Xeloda. The port is desired as the Oxaliplatin can damage your veins. The Xeloda (Capecitabine) is a pill form of the 5/5FU used in the FOLFOX, delivered through a take home attached IV removed aft 26 hours. Xeloda is considered slightly more affective.

The Xeloda causes mild fatigue.

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

I would not hesitate to get another port. Placed well, they are life savers, or rather, vein savers. 

Side effects from the chemo can be all over the place, from mild to extremem. Sadly, I was on the extreme end - I have a list if you are interested -  There are folks here who were able to work well, during chemo. I myself had to use a walker to even stay upright. 

 The problem is, you won't know how it will effect you until you are in up to your neck. 

There are side effects that just go with the treatment, and only a lucky few (of which you could be one) get by without having 'the pleasure'. One is a sensitivity to cold. Touching cold anything causes an electic shock type feeling. Ah, the many times I forgot and grabbed something from the fridge, only to drop it - yogurt, the worst; what a mess - Best to have a pair of gloves handy. Door knobs, metal utensils, the list of things that shock you are, well, shocking. 

Fatigue is a common side effect, and that might be the one that gets you to think about stopping work. The chemo is accumulative, and by the end of treatment, you may have one, some or all of the nasty side effects. And no, I have NEVER EVER experienced fatigue like it. Not even nights and nights and nights up with a sick baby/child. It is truly debilitating. 

Hair loss. Well, you see my picture. I was one of them whose hair thinned to the point I grabbed a razor and shaved it off. Have you ever seen Lord of the Rings? Well, I looked like Gollum, and that is not an exageration.  Many, probably the majority of folks here, did NOT lose hair, or very little. Again, its a wait and see game. There are wigs, hats or, like me, Rock it and go out as is. Just not into the sun, then you'll burn. 

I lost weight the first few days of chemo and gained it back on the good days. One very bad few days I lost seven pounds. 

One thing I like to suggest (well, one of many) is to get a notebook, and write down EVERYTHING that you think is chemo related and things that aren't. Go over that list with your Oncologist before every chemo session. Then write down his/her responses. Also, I think its a good idea to go with someone, because inevetably, you'll get home and think 'What did he say' especailly if you don't know shorthand and can't get everything written down. 

This is a good forum. The best! Great people here, with experiences all across the board. We are here to support and share. 

Good luck as you go forward. 

Tru

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Folfox requires you to be hooked up for two days and that may or may not interfere with your work. I went with Capox and work hasn't been a huge problem for me but I can work from home. The Oxaliplatin has been brutal on me - part of that is being in the Northeast with cold temperatures. Being a nurse is a physical job and I don't think that you can avoid touching cold things so that might be a problem. It may be worthwhile taking infusion day + 1 off; especially the first time you do it.

I did get a port. Minor surgery - and an annoyance for a few days.

They really like you to maintain weight. Some folks here have had severe weight loss on Folfox. I have to fight weight gain as I'm usually very active and the Capox has killed my activity levels.

Please feel free to ask questions. I'm only on round three and it's already been an ordeal.

 

plsletitrain
Posts: 253
Joined: Jul 2017

...and add some more. Whether on capox or folfox, the "ox" which is the oxaliplatin is still there and it is the oxaliplatin that's the should I say, "headache".  Not literal headache, although I did feel some while at it, but headache in the sense that its usually the one that brings the bad side effects.  I do think, in my personal observation, that the oxaliplatin while on the pills is heavier as when in 5-FU.  I had 3 cycles of 5-FU via IV and I felt nothing, only the loneliness of having to wait for that last drip which will happen in 2 days.  For convenience, I shifted to the pills and that's where the oxaliplatin kicked my butt.  I managed 4 of it and decided to stop.  I do believe though that when in pills, the oxy is much heavier because 12 cycles of Folfox (the one on pump) is equivalent to only 8 cycles of capox (the one on pills).  

As to the hair, mine just thinned, on both folfox and capox, but it was not very noticeable.  

I think our no. 1 enemy during chemo is the lack of appetite so I suggest you keep an eye on that.  You have to make sure you're well-nourished as your body is being subjected to the chemo. 

Melissa J
Posts: 3
Joined: Jun 2019

I was 38 when they found a 14 inch tumor in my colon/abdominal wall, pancreas and spleen. Luckily we could remove majority with surgery! I still have infected lymph nodes we are treating with chemo. Like many my age, the idea of cancer never occurred to me, no one screens at my age and I had no family history.  after 8 weeks of recovering from having the tumor and 18 inches of my large intestine removed and resected, I was given the option of CAPOX OR FOLFOX for treatment. I have two teenage children at home and I work full time as an insurance adjuster so I felt like I could continue to work and do the CAPOX since it was every three weeks and daily pill regiment. I have had 2 rounds, and 2 months of daily Xeloda (2000 mg/day). The side effects fromthe Xeloda were worse than the Oxiplatin. I have sores and pain in my mouth, havent had a consistant bowel movement in months and even ended up in the hospital with paralysis of my colon because I took immodium to try to combat the side effects. I have no appetite and have lost close to 70 lbs since I was diagnosed in Feb. (luckily i was overweight to begin with so its not as bad as some may think). The fatgiue and weakeness and diarrhea from the Xeloda are the worst of the side effects-enough that my dr recommended we stop this treatment and go with the FOLFOX as the pills seem to do more harm than good, as I get severely dehydrated very quickly. So on monday i will discuss this new treatment with my dr and start a new schedule. I will still have 10 treatments to go, but I am praying the FOLFOX side effects are less than what I have been dealing with. Has anyone else swicthed during treatment? starting with CAPOX and going to FOLFOX? I would love to hear about your experience! Prayers for everyone going through this type of treatment!

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

I don't know anything about Capox, I just know that Folfox is miserable and mihgt make Capox seem like a walk in the park. But everyone has different responses so who knows. Welcome to the forum. If you start your own introductory post you'll likely ghet more responses.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

My first round was Xeloda and radiation, but believe the Capox is Xeloda with oxi.  My second round after surgery was FOLFOX and that was miserable for me and that contained infused Oxi.  I'm hoping that you do well with this drug.  Everyone responds differently so it's hard for one to compare to what another will go through.  Keep strong and stay hydrated.

Kim

Princey
Posts: 17
Joined: Sep 2018

My husband switched in the middle of treatment.  He also lost a lot of weight, but he DID NOT have any weight to lose!  it was down right scary.  Once he switched to the Folfox, he was pretty much fine.  He gained most of the weight back, hair thinned a bit.  He drives a truck, but locally.  He was able to work through all of chemo.  We have three teenagers! :)  Switching was the best thing he did.  Also, once we switched he did get a port installed.  Doesn't really bother him at all.  HOpe this helps

Melissa J
Posts: 3
Joined: Jun 2019

Wow that is encouraging! thank you! The faigue from Capox rendered me useless for days when taking that and the daily Xeloda. I think that is one of the biggest reasons I am switching to FOLFOX. Ports are a godsend escpecailly if your like me and hard bad/hard stick anyway!

EndoRN1985
Posts: 17
Joined: Jun 2019

Hey there! I am a nurse as well, and work long busy days. I am currently on my first week of treatment. I am getting Capox, which I chose to go with because I didnt want to be hooked to a pump for 2 days, as well as Capox is 3 months vs 6 months of Folfox. I do not have a port, they used a 24g IV for the infusion, and I did notice a bit more ache on the side of the infusion.

 

So far I feel a bit tired (more from lack of sleep from the dexamethasone), have cold sensitivity, a bit of nausea, not as vigorous of an appetite along with muscle soreness and some cramping. Overall not too bad. I'm curious to see how things progress after another week without the steroids. I drink about a gallon of water a day now to stay hydrated. I use biotene mouthwash to keep my mouth from drying out. I drink tepid water and the first bite of food hurts (almost like a salary gland spasm or something). I use a towel to grab things from the fridge because the cold hurts my hands. But, like I said, it's not all that bad...so far! Good luck! 

shu273's picture
shu273
Posts: 33
Joined: Apr 2019

Just a few quick notes to add to the information above.       (treatment at Siteman Cancer Center, St. Louis Mo.)

Port: Very easy surgery, about 30 minutes, I joked with the surgeion through the whole time. So much easier to do blood work and infusion. Heals quickly and will be removed when finished with therapy.

Cape pills: We chose the pills over the infusion for similar reasons as the others on the forum. My dosage was 4 in the morning and 4 in the evening. My side effects were skin iirritation and my lungs burned when exerting myself. I have acid reflux, so probably had something to do with it. Important to remember, your Dr. can and will reduce your dose if needed. We reduced my morning pill to 3, which is only a 12.5% reduction, but made a huge difference in my lung issue. I dont experience tiredness, or diarhea. I think my hair has thinned slightly, but my hairline was allready receeded so, hard to say.  In conclusion, i feel the pill is pretty tolerable when dosage is adjusted correctly. Recommend taking your pills about 3/4 of the way through your meals, drink a lot of fluid, and try to walk if time permits.

Oxiliplatin: Kicked my but on day 3-5 during first session. Extremely tired, cold sensitvity, hand feet tingling. Most went away by day 7-8. i asked for a dose reduction on my 4th session. My dose was adjusted from 135mg sq. to 100mg sq. Huge difference so far. No weight loss, but I have added ice cream to my nighlty fix. 

Dose: Touched on it above, but it is key. The Dr. can only estimate dosage based on body mass plus stage. The first session will be close, but can easily be adjusted to lesson your side effects. it is much more important to be able to tolerate the sessions, than to stop out early due to side effects. 

 

Conclusion: Keep a log and take it with you. Don't be shy about asking for dose reduction.    Also remember the IDEA study, shows only about a 2% edge going 6 months versus 3 months. Also, Oxciliplatin only contributes about a 5% overall edge, so don't be shy about correct dosage. 

Keep in mind the third week, is your week off. It's great. No pills, and the Ox has worn down for the most part. 

I bet you do well.  

Alan

shu273@charter.net

Melissa J
Posts: 3
Joined: Jun 2019

Dr was able to lower my dose of Xeloda to help combat the side effects. I am still struggling with chronic diarreah which there is no relief from due to my high sensitivity to prescription or over the counter drugs send me into bowel paralysis. to combat it I will get weekly fluid infusions. Dr doesnt want me to have longer treatment with FOLFOX and also doesnt feel it will be as effective as the CAPOX. I will try one more cycle of treatment with the adjusted doses to see if it helps, if not we may switch on the 4th cycle. Not looking forward to Thursday, but I am counting the treatments down!

Nazareth
Posts: 87
Joined: Nov 2017

Melisa- if your doc wil lallow it- try taking metamucil poweder for the diahreah, it won't cut down on how many times you go, but it will help with gelling it up some so that it's not quite such a mess-- you'll have to be a bit aggressive with it- taking more than rrecommended I found- I have an iliostomy, so the D was really bad to deal with- the metamucil helped some- I had to take 2 large heaping teaspoons 4 times a day- and it did help, but not when the D was at it's worst- usually right durign the chemo- the metamucil would help some- but the D was just too severe- the doc then cut the dose some, and that heklped and the metamucil worked a bit better-

Steelkiwi686's picture
Steelkiwi686
Posts: 49
Joined: May 2019

Hi Melissa J

just a quick comment to try and lend you some support going through this.... I began getting fluids infused with every treatment (Folfox etc) after chronic diarrhea led to significant weight loss in a short period of time. (Almost twenty pounds in three weeks and I started at 115 ish) it was scary. Anyhow I had  an incident of dehydration and from then on I have received  the fluids. They help me enormously. In fact I just got hooked up with home nursing service that set me up to do infusions of fluids throughout the weeek at home.  I did my first one at home yesterday and I continue to be amazed at how much better I feel afterwards. 

I hope getting the fluids will help you in the same way.   Keep your head up.  

For the record I have since gained most of the weight back. I give credit to the fluids and medical mj that helped me not only regain an appetite but calms my stomach cramping and eliminates nausea (for me) along with various other benefits. I’m lucky to live in a state where it is legal. If you are in a legal mmj state you may want to check into it.  

Keeping you in my thoughts. 

Capox Dude's picture
Capox Dude
Posts: 26
Joined: May 2019

Good luck to all.  As my name says, I very much wanted Capeox and the pills. My Onc says that the North American demographic does not do as well on Xeloda as Folfox infusions, symptoms wise.   But the IDEA study and the reality that an ox infusion every three weeks with pills for two weeks for a three month course (versus 6 months of an infusion and a 48 hour bolus infusion every other week) decreased my chance of bad and possibly permanent neuropahty three to four times was - to me - a no-brainer.  But I am currently my oncologist's ONLY Capeox patient.  And I am on that regime only because I read the study - and I insisted on it.   My hat is off to her for agreeing to do what I wanted.   She says my treatrment is up to me with her advice.  My last infusion (God Willing) is July 22.   I so much do NOT want to do the ox any more, but I will grit my teeth and do that last 130.  

Good luck to all.  The diahhrea was really a problem, but we switched from 8 to 7 pills a day, so we will see how next week goes.

nuc
Posts: 42
Joined: Jun 2019

If your worried about neurotoxicity of the platinum based drugs, here are a couple studies showing that the prescription anti-oxidant Amifostine, is quite helpful in diminishing the incidence. 

One of the studies showed that occurrence rates of grade I-II and grade III-IV peripheral neurotoxicity after chemotherapy were significantly lower in amifostine group than in control group (10.9% vs. 73.9%,; 2.2% vs. 19.6%,). The frequency of regimen change because of chemotherapy-related neurotoxicity was significantly lower in amifostine group than in control group (4.3% vs. 23.9%,P = 0.007)

So maybe worth asking your Onc. about it?

Adam

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5462987/

http://www.cjcsysu.cn/ENpdf/2008/10/18-LuP-CJC27-10.pdf

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