day 5 of Xeloda

sailor_on_a_lee_shore said:

Xeloda Side Effects

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

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_shore said:

Hope You Don't Need to Use It

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

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.       

Chelsea71 said:

It's definitely a Canadian
It's definitely a Canadian thing.

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 said:

I made it thru the first 2 week cycle..

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

 

 

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.

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.