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5 FU w/ leucovoran or Xeloda - Differences?

So Worried
Posts: 111
Joined: Aug 2012

Hi everyone,

First I hope everyone here is doing great and staying postitive. (I'm trying to)

Secondly, I am new here and my husband has colon cancer, stsge 2a
The oncologist is suggesting Folfox 6. Well I have become an anti-oxilaplatin person from reading on the internet the last 5 weeks.

So... What experiences does anyone here have doing either 5fu or Xeloda? For some reason, the Xeloda (no oxi) keeps coming into my mind as the choice of chemo drug for him...but what do I know???

Which do you think is better and which do you think is easier? My husband has to work.

Thank you in advance

luvinlife2
Posts: 172
Joined: Jul 2012

I'm sorry that you and your hubby have to deal with cancer. No way around it, chemo sucks but the good news is that as a Stage 2 your husband has a great chance of beating this disease!!

Having done both the 5fu and Xeloda, I much prefer the Xeloda for the convenience of taking pills. I hated the 5fu bottle attached to me for 2.5 days but I wonder if your husband will be needing this? Will he be receiving all his chemo via IV infusion?

We are all so different that it's hard to say which one he will tolerate better.

Good luck :)

So Worried
Posts: 111
Joined: Aug 2012

I understand what everyone is saying..you just never know which one is going to give more side effects to who...everyone is so different. Just seems like the pill would be so much easier on him..but I don't know :( Our Dr. didn't seem to think the pill was as good as the pump, and the pill was for "older people who couldn't deal with the pump, etc) I hear of all kinds of people on the pill of all ages!! So just wondering what kind of side effects you all had while on the pill form.

Annabelle41415's picture
Annabelle41415
Posts: 4243
Joined: Feb 2009

I've done both. Xeloda with radiation before surgery and 5FU with oxy after. Although Xeloda was a lower dose prior to surgery and didn't have many side effects. It's hard to tell what made me so fatigued as radiation was in conjunction with it. The oxy isn't fun but this is something you all have to be comfortable with in whichever treatment you choose, just make sure that you do your research on it also. Good luck with your decision.

Kim

Coppercent
Posts: 142
Joined: Jan 2012

I have done both. Xeloda and radiation pre-surgery and Folfox and Xelox post
- surgery. I did well on both with side effects. I had another health problem come into Play after 5 treatments of Folfox so my oncologist gave me the option to switch to Xelox because the Xelox hits your system slower than the Folfox. I chose to stop after 8 treatments since it was adjunct chemo and I felt it was better to give my system a break.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

the oxaliplatin is given by IV infusion, regardless of how the 5FU is administered. You can opt not to have the oxaliplatin regardless of how the 5FU is adminstered.

Some people prefer one over the other, but it varies as to which one is preferred.

The advantage to the pump for me was that it meant that chemo was hitting my system for 3 days of the 2 week cycle, whereas with the pills, it is daily, 14 days on 21. I also wonder that if I were nauseous and on the pill form, would I have skipped pills to keep from feeling sick? Not having to take anything by mouth had its advantages for me. Many people work through treatment, both IV and pill form.

However, your husband has to decide (with his dr) which is best for him And yes, as nasty as oxaliplatin is, it is an effective drug, so he needs to decide if he wants to try it. My onc cut the dosage back after my 5th treatment, and dropped oxali all together after my 6th treatment. However, even a few rounds with the oxali will buy him something extra.

Lots to think about. Whatever he decides, he can't look back and second-guess himself, as that will serve no purpose.

Regardless, it is no fun and it won't be easy. However, the rewards are possible remission and (dare I say it) possible cure.

Wishing you both the best,
Alice

So Worried
Posts: 111
Joined: Aug 2012

Thank you to everyone and Alice... Yes, the onc suggested full blown folfox 6, Just seems to be strong to me for a stage 2a..but what do i know..sigh. I just hear SO many bad things about oxi, and i heard the difference is like 1% or so with or without it.

peterz54's picture
peterz54
Posts: 230
Joined: Feb 2012

for advanced CRC oxal adds maybe 6 to 8 weeks to overall survival, and it is likely those patients take more of the drug making the issue of side effects more severe than might be the case for yoru husband. find out how many rounds of FOLFOX6 your onc is recommending and whether they are 2 weeks or 3 weeks apart. maybe only 6 or 8 rounds for Stage IIa, instead of 12 like my wife, and if so, the side effects, such as neuropathy are much less likely to kick in.

also, have a serious detailed discussion with your onc and get to the bottom of what he/she thinks about the benefits vs drawbacks of oxal for Stage IIA.

So Worried
Posts: 111
Joined: Aug 2012

The Dr. said 12 treatments of folfox 6, every 2 weeks.
I said "what about the pill form"? (because I'm thinking no oxi anyway)
He said the pill wasn't as good.
That's what bothers me. We are getting a second opinion. I do not like the sound of oxi. I am just so sad and confused. I can't even sleep anymore.
I guess part of my problem is this too: Is the oncologist saying he does not think the pill is as good as the 5FU because he won't be making any money off of it and the pharmacy will? I cannot help that, that is in the back of my mind!!

peterz54's picture
peterz54
Posts: 230
Joined: Feb 2012

that seems like a heavy treatment for stage ii...the NCCN guidelines suggest several chemo options, not all of which involve oxaliplatin.

the second opinion is a good idea...one thing I learned recently is that there is a bias towards more drugs because there is more money to be made...a sad place to be, and one never knows about one's oncologist.

as for oxaliplatin, I was very concerned also, and the research I read suggested use of infusions of calcium and magnesium...My wife's onc was not in favor so I gave her supplements. She still got neuropathy by the 12 treatment. many get neuropathy earlier.

there are likely studies to indicate how xeloda compares to IV 5FU, but I don't have one at my fingertips. IV 5FU is cheap though, it's the oxal which is expensive, around $10,000 per treatment billed.

The statistics I gave were for advanced CRC, not stage II, so if there really is negligable difference, like 1%, that is something to validate and consider, but it would surprise me...

just checked the NCCN guideline for physicians and there is a distinction made between Stage II T3 which are low risk for recurrence and Stage II T3 which are high risk for recurrence and this will guide the treatement. You mentioned T4 before, which seems to follow T3 high risk in so far as treatment goes.

Do you know if your husband is classified as T3 "high risk for recurrence" of T3 low risk? and why? Or is he T4 as the surgeon suggested?

taraHK
Posts: 1961
Joined: Aug 2003

The last time I checked, the efficacy of 5FU and Xeloda were the same. There could be new studies now which say otherwise.

I've done both. I prefer the convenience of a pill. But, I did have side effects from Xeloda that I didn't have with 5FU (sore soles of feet). Of course everybody has different reactions.

I've done oxaliplatin several times. For me, the side effects were unpleasant but do-able. Again, everyone is different.

I agree with the earlier comment -- see if you can pin your doctor down on why he recommending what he is, what other options exist, and what the evidence is for the efficacy of the different approaches.

Good luck!

Tara

steved
Posts: 836
Joined: Apr 2004

It is hard when you have a bit of knowledge but don't feel you have enough to really be confident of your decisions. The best thing is to find an oncologist who you have faith in to make the right decisions and who will talk to you openly about why he thinks a certain treatment is right and work with you and the patient to get a plan taht is right for you and incorporates your own knowledge and understanding (you are the expert on you and your husband- the oncologist is the expert at the drugs).It may be a bit of shopping around to find this person.

My understanding is that xeloda and 5FU have very little between them therapeutically and having done boh the xeloda is preferable for convenience sake. I didn't have oxaliplatin when I was first dx as stage 3 as in 2004 it wasn't part of teh UK protocols. It now is and I can't help but wonder if I had had it would I have avoided a recurrence ('what if' thinking is the curse of cancer patients- avoid it if possible!)

Have had it now and side effects for me were rough but bearable- still worked full time through it though ended up having a few days off for fatigue. No permanent neuropathy but only did 5 cycle as had a strange probably allergic reaction to it (totally individual and rare that one so not one to really worry about).

I would say that the treatmetns you do now are the ones that have the best chance of preventing recurrence. PErsonally I'm a 'throw every thing at it' person while I can as I found the time when all the treatments stop and you sit and wait to se if it comes back very hard- lots of 'have I done everything I can to make sure it doesn't come back' thinking.

Talk with your husband, get your knowledge up to a level where you feel comfortable with your decisions and find an oncologist you are confident in.

Best of luck,
steve

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

"so worried"

I agree with the first paragraph of SteveD's statement... regarding having too much knowledge, but really not enough.

I am not a doctor and I've learned more about this cancer and its treatment options that i've ever wanted... but as SteveD says, get an onc who you trust and have faith in his/her knowledge, experience and their recommendation for treatment.

I had 24 treatments of Folfox6 with Oxilyplatin, Leucavorin, 5fu and Erbitux. none of it is easy and some may say some is easier than others. sure Oxily has some difficult side effects and i have all of them... as well as other stuff. But, my cancer in my liver went from 30 fairly large lesions plus nearly a 100 micro lesions... down to only 5 lesions. The original tumor in my colon was dead, and after a reverse colostomy surgery, they were able to totally remove the dead tumor.

So, which drug killed the cancer in my colon? Which drug was the drug that reduced 30 tumors that were about 2cm x 3cm x 2cm to 3cm x 7cm x 4cm.... all down to 2cm x 1cm x 1cm.?
my doctors said i had very good reaction to the "chemo cocktail".

it's like ordering a Long Island Ice Tea, yet taking out one or two of the ingredients. The bar tender might look at you and say... "what the heck?, why would you tell me how to do my job... it won't taste the same!"

whereas, that oncologist, who you say most likely gets paid too much money, after his 10 years of education plus years of experience, continuous training and reading... he prescribes the the complete Chemo Cocktail as they all work together.

yes, i have tingling in my hands, my balance is wacky and my finger nails break and chip all the time... i've lost 30 plus lbs, yet have gained some off while on the chemo break and completed the surgery...

so... enough about me.

let's talk about people who HATE the chemo world... well, if you become one of those... you'll need to select the medicine you plan to take. Is is tea, with organic treatments through diet and other supliments and juicing? If you don't want the chemo, then ya better begin learning the organic methods as quickly as possible. Remember, that cancer is growing every week or every month while you're doing your research.

For me, i put my money on the chemo cocktail. I never wanted to miss a drop of that stuff.
and, it worked.

now that i'm post surgery, i am enjoying an 8 week break from chemo and plan to start Xeloda and Avastin on Sept. 10th. Are there other options for me??? Yes! But, so far my doctors and medical team have been spot on with success. Will i ever be cancer free? It sounds like the answer is NO. Most likely never. but "life with cancer" is a newer term and a very new term for me. But, life with cancer is MUCH better than... "lets make you comfortable" or "lets provide you with the best quality of life".

I've read your posts... and I know you are concerned and it sounds like you're on the edge of being a worry wart... but your knowledge of what people say on the internet isn't always the full story.

when i was reading about my colostomy bag take down surgery... i found about a dozen people that said they had serious problems... whereas i found about a half dozen that have few problems. Yet, after further research and talking to people and my medical staff of four doctor and nurses and chemo nurses... I found out that as in life, the people that were or have had GOOD experiences rarely brag and post the great news as often or as loudly as those who had issues or who were pissed off at their medical teams.

so... where am i going with this?

I am unsure how to say it... but, i guess my point is that you can do all the research in the world and you can drive yourself nuts, and in the end you might go and tell the onc that you don't want this or that drug... but they might look back at you and say that you only have half the story or that maybe they feel strongly about their perscription for chemo cocktail and they might know or feel very confident that what they know and recommend actually WORKS.

i just think you need to trust the doctors, if you're going with the chemo route.
or if you're not, then don't and be sure to get moving on the organic or natural route.

sorry if i sound blunt.
personally, I am unsure i would feel this good after 9 months of the organic route.
this is a very quiet disease. Its a leading killer and once found... it needs treated quickly and aggressively.

I would take the side effects of the chemo over the other options of "getting my affairs in order".

sorry... but you can beat yourself up over this stuff by gathering info on the internet... or you can attack it and get it done.

you're in my prayers.

oh yeah... one more thing.

my onc told me to only trust www.cancer.net no other web site, in his opinion, should ever be trusted. this web site is written by top oncologists and research teams.

my best to you and yours.

joe

So Worried
Posts: 111
Joined: Aug 2012

I read your post back to me very carefully and twice. I want to thank you SO much. Oh, and I really love that you are being blunt. I need it. I am past the point of being a worry wart. I am becoming obsessed with collecting as much data and information as I possibly can. I read everything on the internet until 4 am almost every single night since June 25th. (worse day of my life). I must say though, I do only go to reputable websites like the one you mentioned along with mayo clinic and sloan kettering, places like that..and I read everything in this forum in the last week or so.

I don't know what my problem is. Well, I kind of do. I am just sooo nervous and worried. I do not want to get "pills" or anything to "relax" me. That's just not me. I mean I would if I absolutely had to, but I am ok for now. I really don't need counseling...I already know what they are going to say, take one day at a time and etc. etc. etc.

So anyway, I think I am looking for an oncologist to say this to us:
The surgery got all the cancer (well, they really did already said this)
It's over.
He doesn't need chemo
It will probably never come back in his case

So...I am probably living in a fantasy world, looking for an oncologist to say that. They are not going to say that, I am not going to read that. I understand that, but I guess deep down inside, that's what I've been trying to hear or read. (sigh)

I really do wonder about the oxi for a stage 2a though. We have really good insurance and I'm sure he's aware of that, so I guess deep down inside I don't trust him. I worked for a chiropractor for a while and I saw how that works!! So....anyway I am totally leary of that. I just can't help it. We are getting a 2nd opinion and then he must make a decision. I told him I will support what ever decision he makes 100% and I'm really supportive of him and I don't go on and on to him like I do in here. (this is my therapy).

Thank you so much Joe for listening to me go on and on...

I am so happy you are doing well and I will of course pray for you to get through your treatments with ease. I'm glad you are getting a break. Again thank you for being so nice.

So Worried
Posts: 111
Joined: Aug 2012

http://jco.ascopubs.org/content/early/2012/08/20/JCO.2012.44.1949.full.pdf+html

So sorry, I guess you will have to copy and paste.

I just ran across this link/article that someone here posted!!! The article just came out today!! I was meant to see/read it, because I have been struggling SO much with the thought of my hubbie taking Oxi.

It talks about how Oxaliplatin is not effective for stage 2 but is for stage 3.

It takes a long time to read. But if you do, let me know what you think.
(I think you are very smart)!

Anyway, I can't wait to see what our oncologist thinks about it. I'm thinkin 5 FU and Leucovorin. NO oxi and this confirms my feelings all along.

But...I wonder what you think if you read this. If you do, please let me know :)
Thank you!!!

steved
Posts: 836
Joined: Apr 2004

This is a nice summary of the evidence for the use of oxaliplatin in stage 2 and 3 and references a new study that really challenges the idea that there is any real value in stage 2 even if you are high risk (which includes T4).

I think it is worth talking throught with the onc and considering as you make the decision around oxaliplatin. It is probably the best summary of all the evidence in one place I have seen and is as up to date as you can get.

Interesting concept that the different stages of cancer are not simply the same illness caught at different times but that they are different illnesses genetically. I have a cancer that hasn't spread distally despite being in me for a decade- I do think it is genetically different than many otehr cancers- I just wish that we were at a point where we understood cancer enough to use this knowledge to alter treatment. One day...

Thanks for the link-

steve

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 446
Joined: May 2012

Well said!
Sandy

djm_2010
Posts: 52
Joined: Dec 2010

Hello, like your husband I was also diagnosed to have stage 2a last 2010. I was given an option of having folfox and xelox and I chose the xelox because of the convenience of it being the pill type and just being treated as outpatient with my oxaliplatin every 21 days. I don't like to be admitted for my 3 days of 5fu infusion, since a pump is not available in our country to be taken home. I, glad I chose the xelox (xeloda + oxaliplatin), since I'm able to work part time. My side effect with xeloda is minimal, no loose bowel movements or the dreaded hand and mouth syndrome. The oxali is a different thing, the cramps and neuropathy are really bad the first 2-3 days but after that it became bearable. I had 7 sessions of the xelox since during my last session it really got bad.Maybe my side effects are minimal because I am still young. Did I regret my having oxali infusions, now no because it's my 2nd year anniversary and all my scans and CEA are normal. Still have mild neuropathy but bearable and able to do my job fully. I'm healthy now, living my life to the fullest and enjoying it. God is good all the time!

djm_2010
Posts: 52
Joined: Dec 2010

Hello, like your husband I was also diagnosed to have stage 2a last 2010. I was given an option of having folfox and xelox and I chose the xelox because of the convenience of it being the pill type and just being treated as outpatient with my oxaliplatin every 21 days. I don't like to be admitted for my 3 days of 5fu infusion, since a pump is not available in our country to be taken home. I, glad I chose the xelox (xeloda + oxaliplatin), since I'm able to work part time. My side effect with xeloda is minimal, no loose bowel movements or the dreaded hand and mouth syndrome. The oxali is a different thing, the cramps and neuropathy are really bad the first 2-3 days but after that it became bearable. I had 7 sessions of the xelox since during my last session it really got bad.Maybe my side effects are minimal because I am still young. Did I regret my having oxali infusions, now no because it's my 2nd year anniversary and all my scans and CEA are normal. Still have mild neuropathy but bearable and able to do my job fully. I'm healthy now, living my life to the fullest and enjoying it. God is good all the time!

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