New member Xeloda fears

Karen57
Karen57 Member Posts: 9
in Colorectal Cancer #1

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 

«1

Comments

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #2
    I was on xeloda....just want

    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
    Karen57 Member Posts: 9
    #3
    smokeyjoe said:

    I was on xeloda....just want

    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.   

    Thanks Joe, 
    the list of side

    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
    smokeyjoe Member Posts: 1,425 Member
    #4
    Karen57 said:

    Thanks Joe, 
    the list of side

    Thanks Joe, 

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

     

    Everyone is different,

    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
    jen2012 Member Posts: 1,607 Member
    #5
    No wisdom...just good wishes.
    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
    Karen57 Member Posts: 9
    #6
    jen2012 said:

    No wisdom...just good wishes.
    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.

    Thanks
    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
    herdizziness Member Posts: 3,624 Member
    #7
    Xeloda

    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
    Karen57 Member Posts: 9
    #8
    herdizziness said:

    Xeloda

    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

    Wow

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

    thanks 

  • maglets
    maglets Member Posts: 2,576 Member
    #9
    Karen57 said:

    Wow

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

    thanks 

    xeloda

    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
    karguy Member Posts: 1,020 Member
    #10
    I took

    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
    tachilders Member Posts: 313
    #11
    Xeloda is just an oral form

    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
    luvinlife2 Member Posts: 172 Member
    #12
    Should be OK :)

    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
    Dyanclark Member Posts: 296
    #13
    Xeloda

    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
    Karen57 Member Posts: 9
    #14
    Dyanclark said:

    Xeloda

    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

    Thanks so much

    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
    joemetz Member Posts: 493
    #15
    Xeloda

    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
    Coppercent Member Posts: 158
    #16
    Understand your fear

    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
    Karen57 Member Posts: 9
    #17
    Coppercent said:

    Understand your fear

    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. 

    Day 1 first Dose

    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
    herdizziness Member Posts: 3,624 Member
    #18
    Karen57 said:

    Day 1 first Dose

    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.. 

    Karen

    Proud of you!  

    Winter Marie

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #19
    herdizziness said:

    Karen

    Proud of you!  

    Winter Marie

    I was told to make sure I

    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

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #20
    Karen57 said:

    Day 1 first Dose

    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.. 

    Welcome to the forum!

    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

  • Karen57
    Karen57 Member Posts: 9
    #21
    smokeyjoe said:

    I was told to make sure I

    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

    Smiles

    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..

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