Starting Xeloda

only54
only54 Member Posts: 15 Member
edited March 2014 in Colorectal Cancer #1
Hello All - I have posted only a few times before but read here almost every day. I was
diagnosed with Stage IV metastatic colon cancer in April of 2006. I have recently completed the 12 cycle regimen of 5FU,Leucovorin, Oxaliplatn and Avastin. The plan is now to start on Xeloda - nothing else just the Xeloda - 7days on
and 7 days off. Is there anyone else who has done this? Please tell me your experiences - side effects etc. It is my understanding that I will do this unless something changes or the side effects are too bad. A time period has not been mentioned. I really need some of you to tell me your experiences so I won't be so afraid to start this new treatment. Thanks for all your help - this board has been a great source of comfort and information for me.

Rita

Comments

  • impactzone
    impactzone Member Posts: 555 Member
    #2
    Stage 4 here, 47 years old. Had colostomy on 9/1. I just started Xeloda along with Erbatux and oxaliplatin. I take Xeloda for 14 days straight and then 1 week off. I take 4000 mg / day. I have only had 9 days of Xeloda and so far I have had no problems. I asked this questions a couple of weeks ago and most answers came back varied. Some people had no problems, others hads and foot issues. My onc put me on this because I am a candidate for liver resection and they want to see if there is any response in 3 months so they can continue that after surgery or change to another protocol. I am at Stanford in CA for treatment. I admire the fact you have done so much already. The drug that is killing me right now is the Erbitux which has given me a HUGE painful acne rash. All my best but I do like taking the pills instead of the infusion of 5 FU.
    God Bless
    Impactzone
  • only54
    only54 Member Posts: 15 Member
    #3
    impactzone said:

    Stage 4 here, 47 years old. Had colostomy on 9/1. I just started Xeloda along with Erbatux and oxaliplatin. I take Xeloda for 14 days straight and then 1 week off. I take 4000 mg / day. I have only had 9 days of Xeloda and so far I have had no problems. I asked this questions a couple of weeks ago and most answers came back varied. Some people had no problems, others hads and foot issues. My onc put me on this because I am a candidate for liver resection and they want to see if there is any response in 3 months so they can continue that after surgery or change to another protocol. I am at Stanford in CA for treatment. I admire the fact you have done so much already. The drug that is killing me right now is the Erbitux which has given me a HUGE painful acne rash. All my best but I do like taking the pills instead of the infusion of 5 FU.
    God Bless
    Impactzone

    Impactzone thank you for responding. I am glad that you are not having trouble with the Xeloda that gives me some real hope. I will be taking 3000 mg/day. Is there a way that I can find your old post and see the responses? Thank you again and hope you continue to do well with the Xeloda. Is there anything they can do for the rash?
    Rita
  • rthornton
    rthornton Member Posts: 346 Member
    #4
    impactzone said:

    Stage 4 here, 47 years old. Had colostomy on 9/1. I just started Xeloda along with Erbatux and oxaliplatin. I take Xeloda for 14 days straight and then 1 week off. I take 4000 mg / day. I have only had 9 days of Xeloda and so far I have had no problems. I asked this questions a couple of weeks ago and most answers came back varied. Some people had no problems, others hads and foot issues. My onc put me on this because I am a candidate for liver resection and they want to see if there is any response in 3 months so they can continue that after surgery or change to another protocol. I am at Stanford in CA for treatment. I admire the fact you have done so much already. The drug that is killing me right now is the Erbitux which has given me a HUGE painful acne rash. All my best but I do like taking the pills instead of the infusion of 5 FU.
    God Bless
    Impactzone

    I am in my first cycle of Xeloda, but only 2000mg per day because I'm in remission and it's only a maintenance program (Xeloda + Avastin). I used to use Erbitux, and I got the rash really badly. I HATE HATE HATE HATEHATEHATEHATE Erbitux!!! Did I get that point across. I stopped that drug in April and I STILL have that damn rash!

    OK ... anyway, so far no bad side effects from Xeloda. My doctor just this morning said he will increase the dosage if I continue to tolerate it so well.

    Good luck to you both!

    Rodney
  • Puddy
    Puddy Member Posts: 14
    #5
    54 with Stage II, NO,MO, but a nasty tumor, I had a subtotal colectomy on August 3. The onc wanted to treat as Stage III. First recommendation was mediport with 5FU, Leucovorin, and Oxaliplatin. I am very active and travel a lot so I discussed all the options. My onc was open to the Xeloda 14 days on 7 off for 6 months. This is day six and so far so good. Although I checked out the side effects I am determined not to focus on them as I plan not to have any (at least not until I really have them). My onc started me on a low dose 1000 a day for the first two week cycle with a plan to raise to 2500 to 3000 depending on my tolerance.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #6
    My mother almost died from it. From the very 1st round her liver functions were elevated a lot. She stopped. After the 2nd round the same happened. So, there was a threat of liver failure. She was rapidly deteriorating, getting weaker, etc. Then she has got very severe pneumonia as the result of this drug compromising her immune system. Acute renal failure also followed. She recovered but after this there was no more Xeloda for my mother.
  • impactzone
    impactzone Member Posts: 555 Member
    #7
    rthornton said:

    I am in my first cycle of Xeloda, but only 2000mg per day because I'm in remission and it's only a maintenance program (Xeloda + Avastin). I used to use Erbitux, and I got the rash really badly. I HATE HATE HATE HATEHATEHATEHATE Erbitux!!! Did I get that point across. I stopped that drug in April and I STILL have that damn rash!

    OK ... anyway, so far no bad side effects from Xeloda. My doctor just this morning said he will increase the dosage if I continue to tolerate it so well.

    Good luck to you both!

    Rodney

    Erbitux rash
    This one is killing me. I have an oral antibiotic (500 mg Cephalexin) and a topical antibiotic (Clindamycin). I have creams like Sarna and face cleaners like cepaphil. I have been on this for 2 weeks and my face is almost raw. Blisters on my back, neck, chest, small pimples everywhere. If I just squeeze my skin, it bleeds. I can sleep at night with Atavan but this rash hurts. I take Tylenol to help dull the burning sensation. I try wet towels and it still hurts.At Stanford they said that it gets bad the first two weeks but then will drop off a little. They graded me at a 3 or 4 rash.

    I know, the data shows that the more reactive you are the better the drug potentially can work on the cancer. But everyday is hard. Any ideas?
    Impactzone
  • pink05
    pink05 Member Posts: 550
    #8
    My dad's onc said that older people over age 70 have very bad side effects with Xeloda. My dad was on it for about 2 months and had very bad hand and foot syndrome. He has been off of it for 6 weeks and continues to experience the bad side effects from it. He actually handled the 5-fu infusion much, much better. Everyone is different and my dad is much older than you. You may want to consider taking B-6 vitamin. I heard it helps with hand and foot syndrome. Also, make sure you use some good cream on your hands and feet to prevent peeling.

    Good luck, and God bless you,

    -Lee-
  • only54
    only54 Member Posts: 15 Member
    #9
    pink05 said:

    My dad's onc said that older people over age 70 have very bad side effects with Xeloda. My dad was on it for about 2 months and had very bad hand and foot syndrome. He has been off of it for 6 weeks and continues to experience the bad side effects from it. He actually handled the 5-fu infusion much, much better. Everyone is different and my dad is much older than you. You may want to consider taking B-6 vitamin. I heard it helps with hand and foot syndrome. Also, make sure you use some good cream on your hands and feet to prevent peeling.

    Good luck, and God bless you,

    -Lee-

    Thank you all so much. I am feeling a little better about the Xeloda now - I will start on Sunday and will try to keep you posted about how I am doing. I had heard about the Vitamin B-6 - actually maybe a Vitamin B complex or group - but have not purchased anything yet. Also I do have a big supply of bag balm that I can put on my hands and feet. I had a little trouble with the other chemo with my hands not much trouble with feet so I hope that doesn't happen. I too am trying to stay "positive" and believe that I will do really well with this treatment. I think part of the trouble is that we don't hear enough from people who get along well with this. So if I do really well I am definitely going to write and say - hey it was great - I did not have any trouble at all. Have a great day all of you and thanks so much. Will let you know in about a week how the first week went.

    Rita

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