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What was your first day on Xeloda like?

NHMike
Posts: 214
Joined: Jul 2017

I start Xeloda and radiation on Monday and plan to take the day off from work but have some family responsibilities and I'm trying to determine whether I should bail out on those for the first day. The responsibilities just involve driving. I've read many stories about how people work through the 28 days of Xeloda and radiation with a little fatigue and I've read about the side-effects that build up and that require some dosage adjustments. But I haven't run into a summary of how the first day goes and I'm wondering if a few people would share what happened with them.

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

NHMike:

Today marks my 13th day of Xeloda and radiation.  I had absolutely NO physical effects on day one, but I sure did have some mental effects.  I had some serious concern about swallowing the tablets however nothing happened when I did.

I have begun to experience cummulative effects from the treatment.  The radiation is beginning to give me minor intestinal distress and the Xeloda makes me feel pregnant.  I have never been pregnant (even though this is 2017 and just about all the rules have changed) but I clearly remember what my wife experienced during her three pregnancies.  Feelings of nausea will appear from nowhere, hang around for a short while, and then disappear.  Add the two together and the combined effect is bone deep fatigue, but even that seems to be cyclic.  One day I have energy and the next I don't.

I have learned in my brief experience with this treatment that you should live/enjoy the moment.  If you have energy then be normal and do something.  If you have an appetite then eat whatever is appealing.  There will be moments when you have neither.

The "wait" to begin treatment really messed with me mentally.  I wanted to get started!  Now I want to get finished so I can put this phase of rectal cancer behind me and lean forward for the next (surgery).

To further answer you question, I have not had to cancel any social obligations nor part time work events, but cutting the grass in this heat has really become problematic.

Good luck.

Jim

NHMike
Posts: 214
Joined: Jul 2017

Thanks for your comments Jim.

plsletitrain
Posts: 253
Joined: Jul 2017

I haven't had any side effects felt (part of it is mostly mental, I tell myself not to give those side-effects attention because it will only make its presence felt even more if you tell yourself that its there).  No problem with xeloda so far, just normal.  However, its the oxaliplatin that gives me the tough days.  Its around 4 days of having that metallic taste in the mouth (its the same as being pregnant-I've been pregnant twice and during the first trimester is the worst, even water tastes bitter--nothing tastes good during those days).  I don't feel nauseaus, just the metallic taste.  I tell myself, this too shall pass after a few days, and I made it during my pregnancy, I'll sure make it today.  And it weakened me that I didn't have energy to do anything.  I'm fine with xeloda, its the oxaliplatin that's one hell tough drug.

SandiaBuddy's picture
SandiaBuddy
Posts: 897
Joined: Apr 2017

In my experience, the Xeloda is relatively mild when it comes to side effects.  I don't think it should slow you down too much.  The radiation is a matter that I know nothing amount.  For me the side effects are sore joints and back, sores in the mouth, sinus infection, very mild neuropathy in the hands and mild chemo brain as well as mild nausea and some loss of appetite, particulalry in the evening.  The sores in my mouth started about 4 hours after the first dose, and the worst of the side effects by day three.  It sneaks up on you, so usually in the 14 day course there are 2 or 3 four hour periods where I feel a bit down, but nothing that stops me from functioning.  My guess is that you will do fine.  When I get more time I will post something more comprehensive on the Xeloda/capecitabine.  Good luck.

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

Thought I'd have problems but went out to dinner that night with our son and felt normal.  If you have problems on it it could be later but the first couple weeks there was nothing.  The radiation made me tired and got progressively worse for the rectum (rectal cancer) but as far as doing stuff it was still possible.

Kim

NHMike
Posts: 214
Joined: Jul 2017

I'm taking a few days off work to try to clear my head, do some errands and clean up around the house for today and also so that I have a relatively clear head on Monday when I start Xeloda and Radiation. The vast majority of comments that I've seen indicate that Xeloda is well-tolerated. My nurse said that the vast majority of people continue to work while taking it that she's known of and she's had no cases of severe adverse reactions to Xeloda (short-term or long-term). So I'm worrying a little less today.

Thanks for all of the comments posted here.

SandiaBuddy's picture
SandiaBuddy
Posts: 897
Joined: Apr 2017

Mike: While you are doing chores, consider waxing the car, trimming the trees, and doing some of the heavy work you may not have the time or energy to do later.  Also, doing these things has a meditative component from my perspective.  Good luck when your treatment starts Monday.

SandiaBuddy's picture
SandiaBuddy
Posts: 897
Joined: Apr 2017

I tried to import this PDF, but could not figure out how to do it.  The whole document is interesting, but you may want to particularly review the side effects in Table 6.  It is amazing that the doctors often do not even know about this information.  There is a post somewhere about them denying joint and back pain, despite the table showing that 10% of people have back pain and 8% have joint pain.

 https://www.accessdata.fda.gov/drugsatfda_docs/label/2015/020896s037lbl.pdf

Also, this older article from when capecitabine (Xeloda) was first brought into the mainstream has useful information: 

http://www.nejm.org/doi/full/10.1056/NEJMoa043116

I also forgot to mention that "hand/foot syndrome" is one of the most common side effects.  Based on the recommendations in posts on this forum I have used Eucerin cream on my hands and feet daily since before starting and in the off weeks, and so far I have no hand/foot side effects.  I do not know if the cream helps, but it certainly does not hurt.

Also, I have found that certain nutritional supplements seem to take some of the edge off the side effects.

Cheers.

 

 

 

 

NHMike
Posts: 214
Joined: Jul 2017

I really didn't do all that much yesterday - just tried to get some rest and clear my mind which was hard. I did manage to get some sleep last night and walked with my wife for two miles (she's still out walking). I really need to focus mentally as this stuff can drag me down. I've been reading a lot of stories with negative results and many with positive results long-term.

I could also really use a vacation. My last decent vacation was last fall and I've been going pretty hard since then. The chemorad/surgery/chemo is going to make it hard to relax for a while. I had a chemo teach session with the nurse on Tuesday and have a document with the known side-effects. I guess I'm prepared that stuff is going to happen, and potentially bad stuff is going to happen. But you're not truly prepared until it does actually happen.

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

NHMike:

I know exactly how you feel; I was there just a few weeks ago.  Information overload.  Google becomes a friend (not your best) and your worst enemy.  A myriad of tests and conversations about events and possible outcomes.  Attempts to mesh your personal and professional life with the impending doom of rectal cancer.  The urge to run away from it all to return to normalcy eats at you because the clock is ticking.  The old NHMike only has a few days become his life is forever changed.  Good thoughts or bad thoughts, the waiting is the hardest part.

Tom Petty included that lyric in a song and I lived it numerous times “chuted up” and “hooked up” as a paratrooper waiting for the green light, for the command to "GO" and the leap into the air perhaps to injury or even death – the waiting is the hardest part.  All physical preparation and activity has been completed, the body is idle but the mind is not.  Oh, what it can do to us while we wait!  Those final days before I began chemo/radiation were similar.  Even though I dreaded the experience I was DONE with the waiting. 

Muster your physical strength and control your mental focus.  This too shall pass.

 

Jim

NHMike
Posts: 214
Joined: Jul 2017

Thanks. Yes I feel a lot of that. It's really helpful to have others just ahead of me so I know what to expect so I appreciate your posts greatly. I also know that there are folks behind me as well looking for what happens next and how to get through it. That's a very nice thing about these forums.

I also had a look at a few YouTube videos put out by the major cancer centers.

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

I had nausea and stomach pain for several weeks after starting Xeloda, and was very tired from it.  I started taking Xeloda July 2016, and after a year of taking it I still get tired for the 14 days on it but my stomach pains have diminished.  Was on omeprazole for months and found out that it reduced the effectiveness. My doctor said Xeloda needs an acidic environment to work, so said not to take antacids.  I don't eat anything spicy while taking it, and also noticed that if I don't lay down or sit in a recliner for at least a couple of hours after taking the pills, I do better.   My feet have been really dry and nails are brittle, so use a really good lotion on feet and hands. They have improved with continued care.  If I slack on the lotions, they are really dry. 

It affects everyone a bit differently, so hopefully you will have minimal side effects!

NHMike
Posts: 214
Joined: Jul 2017

Just took the first dose. I'm rather methodical in taking out a fresh sheet of paper and putting the pills on the paper, asking my wife to verify the counts, using a glove to move things around and keeping a bowl handy in case I need to throw up. I really hope that this is a non-event. First radiation treatment in a few hours.

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Mike:

I had similar apprehension, but not to that extent.  I have found Xeloda to less offensive orally than aspirin (taste).  Now that does not address the ultimate and cummulative effects.

Looking back to my first day of chemo/radiation and comparing it to any April 15th since 1967, paying taxes was/is worse!

Jim

NHMike
Posts: 214
Joined: Jul 2017

Well, if you're paying taxes, then you're doing something right as you have to make some to pay some. I'm at the office for a while this evening and I've got food and meds and just about to cook the food and then take the meds in 30 minutes. Yes, today wasn't bad and I changed my mind about taking the day off. This might actually turn out to be a quite productive week. I will look forwards to the weekend, though, as you mentioned in the other thread.

 

 

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