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New member Xeloda fears

Karen57
Posts: 9
Joined: Feb 2013

Good morning,

I am new to the board and to Colon Cancer,

i was diagnosed with Cancer in Nov, surgery in Dec and today I am suppose to start Xeloda.

My cancer is Stage 3 28 negative lymph nodes but a para colonic mass that was most likely a lymph that had no tissue left.

So I sit here with my Xeloda in hand and just can't seem to put them in my mouth.. Please someone help me face this fear that the pills will do more damage than the cancer I am not sure I even have any more..

my husband is yelling at me that I am acting like a 2 year old but this is so overwhelming..

anyone have any wisdom advice to make me realize these pills are good?

thanks 

karen 

smokeyjoe
Posts: 1428
Joined: Feb 2011

I was on xeloda....just want to tell you they are soooo much more convenient than getting chemotherapy via infusion.   For me I had no side effects on them either....not saying you won't, no one can predict that.   But, keep moisturizer on your hands and feet,  some people get hand a foot syndrome (I did not have an issue other than a bit of dryness which hand cream took care of).     Others will chime in here with their experience.   

Karen57
Posts: 9
Joined: Feb 2013

Thanks Joe, 

the list of side effects are overwhelming. I never take meds. Rarely even an Advil  this is like taking poisin to me..

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

Everyone is different, everyone has a different reaction to chemo.    Everyone's approach to their diagnonis is unique to them,   some do different chemo. combos, some try other approaches.     If you do have side effects there are meds to help with the side effects,  or the oncologist can tweek your dosage also.    What is universal to all of us  is we don't want the cancer to grow....whatever works!!!     I wish the xeloda was effective for me,  but it wasn't.   I had gone through 10 months of chemo. infusions and got a break,  when the scans showed it was active again I wanted to try xeloda instead of the infusions,  tried it for three months but it just was not effective for me,  I found it so much more convenient over going in to get infusions and being hooked up to a bottle for 48 hours and then getting disconnected.     Good luck with this.

jen2012
Posts: 1185
Joined: Aug 2012

No wisdom...just good wishes. Sorry you are dealing with this too. If you are having second thoughts about the chemo it may be worth more discussion with the docs before you start...along with a second or third opinion.

Karen57
Posts: 9
Joined: Feb 2013

I went to John Hopkins for a second opinion, and basically what everyone has told me is they are about 70% sure the surgery has cured me this is my extra 10-15% chance extra for a cure.
But if the cancer comes back it would/could certainly be fatal.
I will try again tomorrow for I have wasted a precious day sitting here worrying.
For those of you who took it how fast did you get the side effects and were you able to work?
Thanks again for those who responded..

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

I took Xeloda for over a year, along with and without other chemos.  No side effects from the Xeloda.

while on Xeloda and two other chemos, I started college full time, babysat my newborn grandson and traveled.

I think you will find your fears unfounded.

I too, was not a pill taker, I even refused to take pain relievers most of my life.  But I do now what I have to in order to live.

i wish you the best I whatever you decide.

Winter Marir

Karen57
Posts: 9
Joined: Feb 2013

That's amazing.. I am going to try again tomorrow morning.l

thanks 

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

Karen I am stage IV and still alive and kicking after two different regimes with xeloda....it is a chemo that is usually tolerated very very well.  Try not to concentrate on that list of side effects....Karen any drug that is given even across the counter...has long  list of POSSIBLE side effects.....you will not get every one of them....I promise....you may have almost no reaction to this chemo....it really is a good one.

I am so so sorry you are having to get started alone....but we are here.....there are many many of us who have taken this chemo and we can help with any questions you have once you take the jump....

as my hair dresser says......."well pitter patter let's get at 'er"

all the very best....maggie

 

 

 

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I took xeloda the first round of cancer that I had,and the only side effects that I had was some numbing in my hands.What got me feeling not so good was the radiation,but I still did ok.Good luck.

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

Xeloda is just an oral form of 5FU (fluorouracil), and is likely the mildest chemo with respect to side effects.  I have been taking infusion 5FU for 8 months, and the only side effect I have had is occasional loose stool (not really even diarhea).  Don't be afraid of the Xeloda, it will not kill you, but if the cancer returns it might.  I'm stage 4, so my conventional medical options are chemo or death.  I could also try non-conventional approaches like traditional chinese medicine (TCM)...

Tedd 

luvinlife2
Posts: 172
Joined: Jul 2012

You didn't mentin the dose you are taking.  If you do have some side effects the Dr. can lower your dosage.  I've been on Xeloda for almost 3 years and I'm fine.   If you are otherwise a healthy person I think you'll find that it's very manageable.  I always take mine with a bit of food so to avoid any stomach upset.  Good luck Smile

Dyanclark's picture
Dyanclark
Posts: 245
Joined: Apr 2012

I say take the Xeloda my husband feels ok on them  a little queasy after the morning pills. I would say don't take them on an empty stomach.  His dose is 5 a day.  He is also doing a drip of Irinotecan every three weeks.   He started out stage 2, but his remission was only 3 years.   It is working for him and I say take them so maybe every cancer cell will DIE

Dyan

Karen57
Posts: 9
Joined: Feb 2013

You all have given me what I needed and that was someone who has taken it.. I will put my big girl,panties on tomorrow and start this so I can be finished by July.

thanks and I will keep you all posted.. 

Big hugs and gratitude from a newbie..

karen 

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

Greetings

I am on Xeloda... been on it for five and a half months.

Before this, I had 6 months of FolFox 6 with Erbitux (folfox includes a cocktail of Leucavorien, I.V. 5FU, Oxaliplaten, along with some other stuff)

Honestly, Xeloda is a walk in the park compared to the other drugs that I've had.

yes, it seems weird putting poisen in your mouth... but consider yourself lucky that you haven't had a chemo nurse walk up to you with a mask on, gloves on and a white disposable gown on her... while she connects three bags of poisen to your body that gets pumped directly into your heart and into your bloodstream.

sorry, to be so blunt... but take the meds if you want to kill cancer.

or you can try some of the other options that don't include chemo.... but you'll need one of those there witch doctors or something.

if not for you.... for the sake of your family.... take the meds and start beating the cancer away.

Joe

 

Coppercent
Posts: 142
Joined: Jan 2012

Karen I had to smile when I read your post because I completely understand your feelings. Ever since I was a child I have refused all medications. I don't even take an aspirin. I use natural remedies so when I got this diagnosis I feared the treatment more than the diagnosis itself. After a lot of research and discussion I decided to do the treatment. My first chemo was Xeloda. I scheduled my dosages at 7am and 7pm because they said the dosages had to be 12 hours apart. At 5 PM I picked up my medicine and stared at that bottle till I actually got the nerve to take those 4 pills.  It did get easier and I was one of the lucky ones that did not get side effects.  Then I had surgery and woke up with the dreaded pain pump. The next morning when I was fully awake and aware I made them remove the pump. I would like to say it got better but then I did Folfox and had to really take a lot of work to the center to distract me from the IV pole. Everyone is different but I worked 50 hour work weeks through treatments and only took off time for all of the surgeries. Good luck. 

Karen57
Posts: 9
Joined: Feb 2013

So far only some nausea and I was sleepy.. But I am sure it was from not sleeping night last night.. 

and yes i know its only one dose. Only 223 more to go.. 

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

Proud of you!  

Winter Marie

smokeyjoe
Posts: 1428
Joined: Feb 2011

I was told to make sure I took them with food ....  if you have nausea perhaps you could get the doc. to prescribe something for that.....or you may want to go another route which seems to work wellWink

Karen57
Posts: 9
Joined: Feb 2013

joe had to think about that for a minute..made me smile ..

so I had a few hives and they pulled me off for a few days and I wills be taking Claritin before I take the am dose.. 

Now I just want to get on with it.. 

One step forward and two steps back..

Karen57
Posts: 9
Joined: Feb 2013

So in my first round 8 doses, I had nausea, more heart burn but felt crappy, moody as hell, hives, Claratin helped that, and a few mouth sores, Maalox helped that.. Dr said take a week off and start again..
So I started on Saturday on a lower dose.. I was had more nausea and by hour 6 very bad diarrhea.
I took Imodium and called the dr and I am off it again.. Until I see him on Thursday..

This has been my issue with all meds, I always get the side effects..

Any suggestions?
My history is small tumor in Colon removed in Dec,
28 lymph nodes all negative,
a small disjoined para colonic mass, that they believed might have been a lymph node but no lymph tissue could be found.
All scans have been clear.
Was first considered Stage 2 but changed to 3 after they decided the para colonic mass was probably a lymph node

Thanks for any and all advice
Karen

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

Hi Karen, My husband was on a very strong dose of Xeloda 2 years ago. He after a week or so got very sick on it and he considered going off of it. I did some research and found that some studies showed that Folic Acid in your diet increased side affects. We looked back at his diet the previous 3 days and he had eaten a lot of foods fortified with folic acid (breads,cerials,crackers ect) We pulled as much of these things from his diet and he was SO much better within 2 days.I have shared this with others on here and it made a big difference with them also. Wishing you the best! Stephanie

Karen57
Posts: 9
Joined: Feb 2013

So in my first round 8 doses, I had nausea, more heart burn but felt crappy, moody as hell, hives, Claratin helped that, and a few mouth sores, Maalox helped that.. Dr said take a week off and start again..
So I started on Saturday on a lower dose.. I was had more nausea and by hour 6 very bad diarrhea.
I took Imodium and called the dr and I am off it again.. Until I see him on Thursday..

This has been my issue with all meds, I always get the side effects..

Any suggestions?
My history is small tumor in Colon removed in Dec,
28 lymph nodes all negative,
a small disjoined para colonic mass, that they believed might have been a lymph node but no lymph tissue could be found.
All scans have been clear.
Was first considered Stage 2 but changed to 3 after they decided the para colonic mass was probably a lymph node

Thanks for any and all advice
Karen

Trubrit's picture
Trubrit
Posts: 1290
Joined: Jan 2013

I noticed in an earlier post that you said 1 down 233 to go. 

My adivce here is to try (easier said than done) not to think of all the meds, or the months ahead, and just deal with things one day at a time. 

I'm stage 3 too, but on the FOLFOX & 5FU infusions. I want to be like others on here and not have many side effects but so far it has been miserable.

I'm thinking personally that I'm spending too much time feeling sorry for myself, so plan on being more active after tomorrows session. Easier now the freezing weather has taken a holiday.

So, try to take this one day, one week at a time. It gets rather overwhelming to think of all the tablets or all the months ahead. 

Keep us posted.

 

annalexandria's picture
annalexandria
Posts: 2172
Joined: Oct 2011

Just take it one day at a time!  It's kind of a cliche, but the only way to get through this challenge, imo.  Looking too far down the road is just stressful, and us cancer folk don't need any more of that!  Hugs and strength coming your way~Ann Alexandria

nick54
Posts: 1
Joined: Mar 2013

hi karen57,sorry to hear about your diagnosis,two year xeloda taker here,and first thing i'm going to say is TAKE THE PILLS!,it will be the best thing to do for yourself,taking pills are scary,i know because i had trouble in the beggining taking any type pill but since my first operation in "06" now i have no problem swallowing anything,it's something you'll just get use to,it's not as hard as you think. i have had two operations radiation treatments,regular chemo and i still ended up with a third tumor,right next to my kidney,considered inoperable,so i was lucky,i healed inside enough to withstand another round of radiation to kill tumor and it worked,only problem now is i have stent in kidney so it drains completely,i have it changed every three months,well it was at that time i was told about xeloda,i asked about side effects,and i do get some of them,most common, short term memory loss,so keep note book and pen handy,also buy tin of bag balm because your hands an feet are going to peel,and the balm works great,i put it on over night with vynil gloves on, and my hands are fine,i do same thing with my feet except i use bread bags slightly tied on feet,this goes away in time i've been on it two years now and my hands peel very little,you'll also experience loss of appetite,just eat small meals,half sandwhich or cup a soup,and make sure you take multi-vitamin an iron pill every day.take slo-fe iron pill it will not upset your system as much,nausea is another problem,compazine worked for me,as you take it the side effects ease up,the only thing that you'll have trouble with is memory,short term memory will be your biggest problem once your body adjusts to the xeloda,it sounds scarier than it is,so if you want to live,i suggest, push your fears aside and just swallow the pills,in the two years i've been on it i'm cancer free,and the side effects are slowly going away. rule one when dealing with cancer is LISTEN TO YOUR DOCTOR, do what they tell you,forget the fear and just do it,your life depends on it.

Dan46
Posts: 6
Joined: Mar 2013

Karen I felt like that yesterday morning when I took my first dose of xeloda, I'm hoping you are doing well on them and that you are feeling good. 

 

God Bless

Dan

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