CSN Login
Members Online: 10

day 5 of Xeloda

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Ok.. so far..

So far no sideeffect.. How long were you on this before you felt any sideeffects.

I took this drug for one week last year untill I switched onc's looking for a more progressive treatment and cannot recall if I had any sideeffects.

I know I am jinking myself asking this.. but knowledge is power. right...

on a side note.. I saw the therapist last night.. she told me I am a rather well adjusted stage 4 cancer patient and doesn't really understand why my onc thought I needed her assistance.. hahaha... well adjusted.. me??

Happy Spring everyone!

Donna

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

Sorry, I can't help you with first hand knowledge, but Xeloda is what JBG takes. I know it is one of the "easier" chemos as far as side effects, for her.

And girl, you are definitely "well adjusted". What a phrase! LOL You are caring, compassionate, intelligent, attractive and a friend to everyone. In this day and age, cancer or not, you're well adjusted to life.

Luv,

Wolfen

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Thanks Wolfie,,, your family is so lucky to have you... Hope you had a great birthday...

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Xeloda is converted to 5FU in the body, so teh side effects are the same as 5FU (diarrhea, mouth sores, nausea, etc..).  I think the side effects are generally milder with Xeloda because you are taking the same dose over a longer time (2 weeks vs. 2 days for 5FU infusion).

 

Tedd

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Yes, Xeloda is 5fu in pills.. I hope you are right about the sideeffects slower coming;

keystone's picture
keystone
Posts: 133
Joined: Dec 2010

I try to catch anyone that has questions about Xeloda because my husband did fine the first 10 days or so then got very sick with it. I read that Folic Acid in the diet or as a supplement increased the side effects of it. We cut out breads,cerials,pastas and anything else that was fortified with Folic Acid and he was a different person! I hope you don't have problems but if you do keep this in mind. I have shared with others having trouble and it helped them also. Stephanie

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Yes, they warned me about folic acid and especially b vitamins.. I never thought about the bread products.. that would just kill me... I need them them to stay alive.. after gastric bypass and now a colostomy.. there is so little varieties of stuff I can eat.. carbs are a stabilizer for me.. ugh...

 

keystone's picture
keystone
Posts: 133
Joined: Dec 2010

I try to catch anyone that has questions about Xeloda because my husband did fine the first 10 days or so then got very sick with it. I read that Folic Acid in the diet or as a supplement increased the side effects of it. We cut out breads,cerials,pastas and anything else that was fortified with Folic Acid and he was a different person! I hope you don't have problems but if you do keep this in mind. I have shared with others having trouble and it helped them also. Stephanie

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Donna, I am on xeloda for the second time. Last year I was on it along with oxy and avastin for 8 rounds and now by itself. I find it very manageable... I take zofran and lomotil 1/2 hour before the pills morning and night and make sure to put lotion on my hands and feet. Starting my fourth round on Saturday....a little fatigued but able to function and enjoy life. Please keep me posted and any questions, please feel free to ask.  Hope you continue to do well......-~ Ann

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

This is my 3rd attempt.. did:

5fu 8 weeks

folfox - 13 rounds

folfiri - 15 rounds w/Vectibix

now Xeloda.w/Vectibix

I am hoping it goes well and I get the results I need.

 

Chelsea71
Posts: 1167
Joined: Sep 2012

I asked Steves onc today if he could switch from the pump to Xeloda. There has been some concern that a clot near his port is preventing the 5fu from emptying the pump within the time frame. Lately, his bottle is not yet empty come disconnection time. There is also concern that the clot is absorbing too much chemo. It seems to me that the oral form of the same medication would solve the problem. Not going to happen. Apparently, (We live in Ontario, Canada) Xeloda is considerably more expensive than the pump. OHIP will not cover it. Would have to ask our private insurance company to pay. Would like take a while to get approval. Steve is only scheduled for three more sessions, so she prefers to hold off for now. Plus she says that the side effects might be worse for him. He tolerates them pump well. It surprises me that the oral med is more expensive than the pump. To me, the pump looks like the more expensive route. Especially when you consider the cost of disconnection etc. The onc agreed. The only other solution (around this clot) is to connect the pump to a vein in his groin, instead of the vena
cava (port)!!!!!!! Steve was not jumping for joy over that suggestion. The onc advised against it due to his recent bleeding problems. Will continue on as usual. She suspects the chemo is being effective, as is.

I guess I got slightly off topic. Glad your tolerating the Xeloda well, Donna. I've only heard positive comments regarding this form of the drug.

Chelsea

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

HI Chelsea,

Yes I was aware the Xeloda was more costly, but since this is my 3 try to keep my METS is check the dr listened to me when I cried no pump and no more loss of hair.. though I think she wanted me back on folfox or folfiri and neither made me a happy girl.. I know vanity is not a great logical balancing route regarding cancer treatment plans.. but it is what it is.. and I am of the opinion if I look ill I will feel ill.

Wow.. I never heard about what they would do for a clot.. so that is good to know.. well I hope all works out..

Donna

steved
Posts: 836
Joined: Apr 2004

Took xeloda for about six months last year and found it very tolerable. Was on avastin a lot of the time and found the concoction very tolerable. Some tiredness and mild nausea but worked full time and functioned reasonably. For me it was far easier than oxaliplatin and  very convenient being oral.

This isn't everyone's experience but I hope it goes well for you and you get the results you are looking for,

Steve

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

  Yes, that is good to know..

and Yes we talked about adding Avastin.. I wonder if that would be with the Vextibix or if was a trade off.

Vancouver
Posts: 16
Joined: Mar 2013

My mom is on her fifth round of xeloda (not taking with anything else).  Side effects kicked in after the third round, but they have been minimal--just sores on her hands.  These resolved with interruption (she is now two weeks on, two weeks off instead of two weeks on, one week off).  The issues with her hands have been so minor in comparison with the dramatic results she has been getting (seriously, nothing short of miraculous!).  I hope you have the same amazing results and ability to tolerate xeloda.

Re: the costs of xeloda, I'm surprised anyone is having trouble getting this covered in Canada.  We live in BC and the drug has been covered for my mom. 

I remember being disappointed when my mom was deemed too weak for IV chemo treatment, but in hindsight we are so lucky her oncologist insisted on xeloda given how well it has worked for her.

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

I have done full course of 5FU......had great difficulties....have done xeloda by itself and then a course of xeloda with oxalyplatin.

I found the xeloda the easiest to tolerate by far.  My side effects with xeloda were digestive....had gut pain....not just nausea.....lots of nibbling crackers.....I agree with you....sometimes the carbs would be hard to give up ....sometimes bread and crackers just feel like a sopper-upper ....

Vancouver I am in Ontario too and like Steve and Chelsea I had trouble getting the xeloda.....my onc had to do some mighty fancy footwork to get it covered.....to tell truth i cannot remember what she did.....but it was all under the table .

Stay well Donna and good luck with the xeloda......

mags

Chelsea71
Posts: 1167
Joined: Sep 2012

I was going to send you a pm, Maggie. I remember reading that you had taken Xeloda and wondered if you'd had a hard time with regards to coverage. I got the impression from Steves oncologist that it would be possible to convince the insurance company that the oral medication was required but that it would be a big hastle. She also said that the doctors have been trying to convince the government that Xeloda can be more cost effective and more convenient for the patient. She said that they are beginning to understand and she can see Xeloda becoming much easier to get within the near future. The pump is a bit of a pain. Especially with the problems Steve has been having lately. He will go to the home care office for disconnection and they will say to come back in four hours. Pills would be so much simpler!

Sorry to hijack your post, Donna

lilacbrroller's picture
lilacbrroller
Posts: 267
Joined: Jun 2012

i'm reading your post with rapt attention as I too will be on Xeloda. I will probably start next week.  The only way i can get the pills is thru mail order, which is fine.

How' the sun sensitivity?

 

take care

 

Karin

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

I burned tomato red within seconds on 5FU.....was not so sensitive with xeloda but one of the courses went through the winter......so that doesn't count....

mags

fighting_ big_c's picture
fighting_ big_c
Posts: 60
Joined: Mar 2013

My mom was taking Folic Acid before until this week that I read that Folic Acid should not be taken with Xeloda?

renw's picture
renw
Posts: 282
Joined: Jan 2013

5fu is given together with leucovorin. Leucovorin facilitates the transport of 5fu into the cells. It is structurally almost identical to folic acid. If you take folic acid at the same time, this increases the 5fu toxicity.

5fu is a metabolite of xeloda. I have not been on xeloda yet so have not researched this in detail, but considering it is converted to 5fu, folic acid is likely to also increase its toxicity.

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

Hi dmj,

My onc put me on Xeloda back in December as maintenance chemo. 

When I received my first bottle of the drug, I was also given a goodie bag from the manufacturer Genetech.  The company sponsors a FREE program to assist patients taking the drug that includes a help line you can call 24 hours a day and speak with a registered nurse trsined in Xeloda and its side effects.  You can find out more and register for the FREE program at http://www.xeloda.com/resources/.  

As far as side effects are concerned, in addition to the resources provided by the Xeloda help line, you can get more information from Chemocare.com.  You can find specific Xeloda information including a list of side effects at http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx

As far as side effects I've personally experienced, the worst is the Hand and Foot Syndrome.  It produces peeling and sores (not open wound type) on your hands and feet that includes numbness in the fingers and toes and the bottoms of the feet.  While it started during my second two-week "on" cycle, it didn't get bad until my third two-week "on" cycle.  It has gotten bad enough now that my onc has changed me to one-week on and one-week off cycle.  It's very important to get ahead of the Hand & Foot Syndrome.  There are various creams and ointments you can use, but among the most popular and from what I've learned from other patients on various message boards are:

1. Uddery Smooth Udder Cream - yes it was developed for cows to reduce the irritation from repeated machine milkings.  The "goodie bag" I received from Genetech included a small tube of it.  You might be able to buy it from a local pharmacy although I wound up buying a supply from Drugstore.com

2.  Zim's Crack Creme is also good. I bought a supply from Drugstore.com

3. In addition, an onco nurse passed the following along to another patient, although I haven't tried these myself.

   a.  Any lotion with Dimethicone is "great" for cracked skin.

   b.  You can try a homemade concoction of:

      (1) 16 oz. baby lotion

      (2) 8 oz. Vitamin E cream

      (3) 8 oz. Vaseline

   c. Finally, you could try something called Aquaphor (sic) which was also recommended by another patient.  Supposedly it is very healing but messy. 

Typically, I lotion up my feet with Udderly Smooth before bed, wrap them in Saran Wrap and put on socks.  I also apply Udderly Smooth liberally to my hands four or five times a day.  Some wear white gloves, especially at night over the Udderly Smooth. 

The only other side effects I've experienced are some abdominal discomfort and some loose bowel movements.  Oh, and of course the ubiquitous low blood counts it seems accompany any chemotherapy. 

If you want to know more about my experience with Xeloda, drop me a note. 

Good luck and fair winds and following seas.

Rick

Trubrit's picture
Trubrit
Posts: 1321
Joined: Jan 2013

That was a full on informative post which has now been saved to my cancer file. 

I do believe I will be on some form of pill when I do my radiation, so your information is going to be very helpful indeed.

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

You are welcome and I'm glad you found the post informative.  At the same time, I do hope you won't need to find it useful, by "missing out" on the side effects these treatments are intended to mitigate. 

Fair winds and following seas

Rick

smokeyjoe
Posts: 1428
Joined: Feb 2011

I'm in Ontario too,  and was on xeloda only for three months, but it was not effective for me.    I would love to have been able to do xeloda and avastin but was told no funding for that in Ontario .....  I may have to be switched to folfox,  I asked if I would still get avastin  and was told that  No  avastin is only available with folfiri regimine.       

renw's picture
renw
Posts: 282
Joined: Jan 2013

Both folfox or folfiri can be used as first line chemo. I personally liked folfiri more side effect wise. I would use avastin sooner than later if i had a choice.

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Hi Joe,

My dr has mentioned using Avastin with Xeloda but we also discussed it wth Folfiri and Folfox.. I wonder if it is a canadian thing..

I am presently on the Xeloda with Vectibix.

Please be aware that FolFox will cause Neuropathy.. different in every person to different degree's. While Folfox is effective just be sure to keep the dr informed so they will adjust the dosage as the effects occurr.

-Donna  

 

Chelsea71
Posts: 1167
Joined: Sep 2012

It's definitely a Canadian thing.

lilacbrroller's picture
lilacbrroller
Posts: 267
Joined: Jun 2012

Donna and fellow cancer comrades -  How is the xeloda going?  I just started today, and I didn't keel over immediately. This is good. 

Did you get the special seven day pill box with compartments from Genentech? I was thinking that this would be impossible to open with hand and foot syndrome, you know?   I have residual oxaliplatin issues in my fingers anyway. Clearly someone not actually taking the drug designed this box!

It's probably too early to tell  for me re: the side effects.  I can't imagine doing anything that doesn't involve friction - driving a car, typing, using a mouse or touchpad.  Sigh. I"ll find some workarounds. Probably a steering wheel cover would be good in the car, and if it gets bad and I can't type, I'll shake down my employers for ADA gear. 

hope your course is going well. I'm taking it alone, not with anything.  My onc talked about adding avastin (I'm American, not Canadian) but so my far my CEA levels are stable so he sees no need yet.

cheers

Karin

 

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Starting next cycle this saturday... I am in New Jersey, USA ...

My CEA has always been undectible.. so we never know what is really going on but we did a biopsy a year ago and found the mets to be crc... ugh..

Latest scan showed some minimal growth while off chemo so hopefully Xeloda will be enought to kick it back..

I know that pill case is something else.. I have neuropathy too from the oxyaliplatin and now cut on fingers from Vectibix.. but the RX company my xeloda comes from puts it in blister packs portioned out for me AM and PM by day.. can't get any easier than that..

I didn't find any side effects while taking it for the 2 weeks.. but after the final dose some diarhea started.. but that is tolerable..

Good Luck with your cycle..

Donna

 

 

fighting_ big_c's picture
fighting_ big_c
Posts: 60
Joined: Mar 2013

Hey Donna. Where in NJ do you live? Which hospital do you go to? My mother goes to Robert Wood Johnson in New Brunswick. She is also taking Xeloda 3,300 mg, 1,650 each day and night. She just started her chemo last Tuesday with the IV infusion of Oxylapatin. I hope you tolerate well the side effects. I am praying that too for my Mom. God Bless you.

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

I'm in Parsippany, I go to St Barnabas in Livingston.

I am taking 1000 AM and 1500 PM

did the Oxy and it wasn't to bad for me but others had it harder... the neuropathy effect is the worst part of it.. and is the gift that keeps on giving...

RWJ is a great hospital.. I think that is the cancer institute of NJ.. but too far for me..

lilacbrroller's picture
lilacbrroller
Posts: 267
Joined: Jun 2012

congrats on week two and no side effects - I hope you're in the clear.

I'm only on day 3, so it's too early to tell. 

am in the DC Metro area - am going to see the cherry blossoms today after work.  Mostly buds, I think, due to the late spring we're having this year.  I rode past the tidal basin today and saw some pink fuzz. Maybe this weekend they'll be at peak.

Why are our fingers affected? I didnt' take Vectibix - only Folfox, so just have that damage to contend with. I have more mobility and flexibiilty two months out, which is good. blister packs would be nice!

take good care

Karin

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Cherry Blossoms are awesome.. I never seem to get to DC to see them.. enjoy...

lilacbrroller's picture
lilacbrroller
Posts: 267
Joined: Jun 2012

still too cold. Spring has not sprung. That groundhog didn't know what he was talking about !  Only two trees had blossoms - hopefully in a week, if we get some warm weather this weekend, they should be blooming and pretty...  I will go back.  

I lived in NJ twice in my life. First when I was around five in North Jersey (Morris county) and then as a teenager in Ocean County.  The pine barrens were nice. And the beaches.

atb

Karin

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Cherry Blossoms are awesome.. I never seem to get to DC to see them.. enjoy...

Helen321's picture
Helen321
Posts: 721
Joined: May 2012

I had to revise my comment.  I did Xeloda 7 days on, 7 off for 12 weeks and didn't have many issues, some stomach upset, feeling a little off and funny taste after a few weeks.  The only time I had a real problem was with the oxylaplatin toward the end of the week.  If I recall it was probably the 4th or 5th week before I had the issues with cold sensitivity, jaw pain just at the start of chewing and general malaise although I was able to work the whole time.  I would start out the week just fine but then with the oxyplatin I'd have to wear socks and gloves and feel like I had the flu.  Then I took a six week break and then started taking it daily 5 days on with radiation, 2 days off and after a few weeks, had to stop working from the combo. When I skipped the Xeloda I felt better on those days (usually skipped a Monday).   Was able to go back to work 3 weeks after stopping both.  I've had no residual effects thankfully. 

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Sounds about right... I worked straight thru all my treatments so far.. never missed a beat.

Keep the gloves around while on the Oxy...

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network