Back from Onc.-Xeloda feet - part 2

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Jaylo969
Jaylo969 Member Posts: 824 Member
edited March 2014 in Colorectal Cancer #1
As I figured would happen my doctor didn't like the foot & hand problems. Decrease in chemo meds....again.

I am starting my 3rd cycle of Xeloda tomorrow...(after flunking out on the Folfox...5 infusions)On the 1st cycle of Xeloda I was on 3,300 mg.2nd cycle lowered to 3,000 mg now lowered to 2,000 mg for 3rd cycle with the option to go up next time to 2,500 mg if my feet & hands behave.I have 5 treatments in all left to accomplish...hopefully.

I'm getting a little frustrated. Is this normal for doses to be changed around this frequently?Is the effectiveness of the chemo lowered every time the dose is lowered?


Good news is my bloodwork has been good since I started chemo, I am maintaining my weight, and I only have 5 treatments to go and I hope and pray that will be all for the chemo.

Sorry for the vent....on another note, it is gorgeous here in the deep south. Everything is blooming and strutting it's stuff.Can't feel bad for long when surrounded by all this beauty in creation.

-Pat

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  • maglets
    maglets Member Posts: 2,576 Member
    #2
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    Oh Pat ....5 of folfox is
    Oh Pat ....5 of folfox is not flunking....and you are still doing your xeloda....please don't be so hard on yourself...your body is telling you what you can do....hang in sweetie...you are doing a great job....

    mags
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
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    The Body Says.....
    Pat

    Nothing abnormal about adjusting dosages and or length of treatments. They could put you on a 7/7 plan and that would even be a good thing.

    What's important to remember is to "throw away" all pre-conceived notions of what is normal or even right. In this case, the BODY RULES! Your body can't have what it cannot take. It's better to have a smaller dosage than NONE at all, right?

    As far as the effectiveness, this is an individual result, but as I said above, if you cannot tolerate the treatments, then it's not doing you any good anyway. Quality vs Quantity is the mantra here.

    And Folfox is a beating all by itself...I did 8 of them and waved the white flag as well...the last 2 infusions took a few months to do, 'cause it beat my immune system and murdered literally my platelt count FOREVER.

    So, you've done good. People underestimate Xeloda - society has conditioned us to think that a pill is just a pill...but as you know this is chemo, 5fu in a pill and it carries a high toxicity that builds up in your system during and long after treatment. Foot and hand syndrome takes time to recover from even after your last pill.

    So, take what you can tolerate and see if you can build it back up - you're almost there. Pulling for you as always.

    -Craig
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #4
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    Sundanceh said:

    The Body Says.....
    Pat

    Nothing abnormal about adjusting dosages and or length of treatments. They could put you on a 7/7 plan and that would even be a good thing.

    What's important to remember is to "throw away" all pre-conceived notions of what is normal or even right. In this case, the BODY RULES! Your body can't have what it cannot take. It's better to have a smaller dosage than NONE at all, right?

    As far as the effectiveness, this is an individual result, but as I said above, if you cannot tolerate the treatments, then it's not doing you any good anyway. Quality vs Quantity is the mantra here.

    And Folfox is a beating all by itself...I did 8 of them and waved the white flag as well...the last 2 infusions took a few months to do, 'cause it beat my immune system and murdered literally my platelt count FOREVER.

    So, you've done good. People underestimate Xeloda - society has conditioned us to think that a pill is just a pill...but as you know this is chemo, 5fu in a pill and it carries a high toxicity that builds up in your system during and long after treatment. Foot and hand syndrome takes time to recover from even after your last pill.

    So, take what you can tolerate and see if you can build it back up - you're almost there. Pulling for you as always.

    -Craig

    Mags & Craig
    Thank you so much. As usual, you said the right things and I needed the pep talk.I'm bookmarking this and will read it everytime I start doubting and losing confidence.

    I am so glad I found this support group. Y'all ROCK!

    -Pat
  • biglaur
    biglaur Member Posts: 72 Member
    #5
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    feet :(
    sorry you're suffering...I went thru it and somedays thought my hands and feet would never be the same. As I mentioned in another post, bag balm and udder cream felt good, microwaveable sox and gloves were great, but Cymbalta made it all endurable. Seriously, it was like a miracle after only a few days. I did 5FU, Folfox, Oxalyplatin, Avastin and a clinical trial drug for 11 rounds and suffered pretty serious neuropathy. After that, I did 6 months of Xeloda, 3,000 mg 14/7. My feet and hands were raw, peeled and blistered. I paint and was unable to hold a paintbrush, but as soon as I started the Cymbalta I improved. The numbness remained, but it all left after about 6 weeks after treatment. Good luck...know it goes away
  • JR
    JR Member Posts: 139 Member
    #6
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    Not unusual at all
    Pat,

    I started out at 5000mg. Over the first five treatments it was reduced down to 3000. That seems to be the right amount for me. I weigh 210 and can only handle 3000 so I think you are doing great. Craig makes a good point. Chemo is chemo. Pill or IV, it's still chemo and kicks most of our a$$es.

    John
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #7
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    biglaur said:

    feet :(
    sorry you're suffering...I went thru it and somedays thought my hands and feet would never be the same. As I mentioned in another post, bag balm and udder cream felt good, microwaveable sox and gloves were great, but Cymbalta made it all endurable. Seriously, it was like a miracle after only a few days. I did 5FU, Folfox, Oxalyplatin, Avastin and a clinical trial drug for 11 rounds and suffered pretty serious neuropathy. After that, I did 6 months of Xeloda, 3,000 mg 14/7. My feet and hands were raw, peeled and blistered. I paint and was unable to hold a paintbrush, but as soon as I started the Cymbalta I improved. The numbness remained, but it all left after about 6 weeks after treatment. Good luck...know it goes away

    Thank you biglaur
    for the heads up on Cymbalta.I'll do some research on it and talk to my doc about it.

    By the way, I want to say welcome to the group here. This is one of the best colon cancer forums I've found and the people are so kind and 'real'.

    Best wishes,
    -Pat
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #8
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    JR said:

    Not unusual at all
    Pat,

    I started out at 5000mg. Over the first five treatments it was reduced down to 3000. That seems to be the right amount for me. I weigh 210 and can only handle 3000 so I think you are doing great. Craig makes a good point. Chemo is chemo. Pill or IV, it's still chemo and kicks most of our a$$es.

    John

    making more sense
    After reading all of your posts it is making more sense to me.My doctor just addressed my worries with "It's ok, you'll be alright". That doesn't work for me..

    JR..you are about 80 lbs heavier than me so maybe 2,000 mg IS about right for me.Thanks for taking time to help me.

    You all have a very good day.

    -Pat
  • coloCan
    coloCan Member Posts: 1,944 Member
    #9
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    Jaylo969 said:

    making more sense
    After reading all of your posts it is making more sense to me.My doctor just addressed my worries with "It's ok, you'll be alright". That doesn't work for me..

    JR..you are about 80 lbs heavier than me so maybe 2,000 mg IS about right for me.Thanks for taking time to help me.

    You all have a very good day.

    -Pat

    While on Xeloda, it was five days a week for five weeks at
    3150 mg/day (pills in morn and evening)while doing 5 doses of oxi(every Mon for 5 weeks) and 33 radiation treatments to shrink huge tumor at very end of rectum prior to surgery. Had various problems requiring extra visits to doc and hosp at times (fecal backup, dehydration, extreme fatigue/lack of appetite;you know;= no break in treatment but was unable to take Xeloda night of 5th and then final oxi due to severe reaction during which I though I;d die that night. Otherwise took my medicine. .......Postop chemo is another story!!!!steve

    The Gratedul Dead said "Keep on truckin"....I say: "Keep on Fightin" ...

    no mercy to an enemy who shows me none!!!!!

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