Xeloda -help

CanadaSue
CanadaSue Member Posts: 339 Member
edited March 2014 in Colorectal Cancer #1
Hi all, I don't post very often, but do check the board out all the time.

Quick history: hubby dx'd Jan 06 4 surgeries followed - 1st to remove a foot of the colon, 2nd to remove the remaining colon and debulking of the pertitoneal wall- ended up with an illiostomy, 3rd to remove his bladder - ended up with an illoconduit, and the 4th was to remove 2 tumors in the liver. The last one was aborted due to the cancer having spread even further than they thought. The cancer has now spread to his lungs where he had a multitude of tumors. In July 06 Bill did 9 out of 12 rounds of folfiri and had to quit because of the side effects. Once the port came out he said he would never go thru that again. He is on his first round of Xeloda 5200 mg per day. I have seen on the board where Xeloda was used in conjunction with other drugs - Sundanceh. Has anyone ever gone with just the Xeloda, and if so what strength per day?


(((Hugs))),

Sue

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Hi Sue
    I'm sorry to hear that your husband is having a rough time. I have no experience with this but I just wanted to know that you are both in my thoughts. I do think there are a few Xelodo patients here so someone should be able to give more support. I just want to keep your post near the top of the queue.
    -phil
  • sfmarie
    sfmarie Member Posts: 602
    #3
    You are in my prayers
    I too have no experience, but reading your post, breaks my heart. You are in my prayers.
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #4
    PhillieG said:

    Hi Sue
    I'm sorry to hear that your husband is having a rough time. I have no experience with this but I just wanted to know that you are both in my thoughts. I do think there are a few Xelodo patients here so someone should be able to give more support. I just want to keep your post near the top of the queue.
    -phil

    Thanks Phil
    Thanks for keeping us in your thoughts.

    It has been a long road, and we will keep on fighting this beast!

    CANCER SUCKS!




    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #5
    sfmarie said:

    You are in my prayers
    I too have no experience, but reading your post, breaks my heart. You are in my prayers.

    Thanks sfmarie
    Your prayers are greatfully accepted!

    Hugs,

    Sue
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    Hi Sue
    Hi Sue

    So very nice to meet you! I've heard alot of good things about you.

    I too am very sorry to hear about your husband - he has had more than his share and am sorry you are both dealing with this.

    My onc told me they usually combine Xeloda with Avastin for treatment after all of the big chemo is done, like Folfox or Folfiri. That's what happened to me, after the Oxy licked me, we stayed on Xeloda and Avastin until we discontinued all treatment and started watching and waiting.

    My onc did tell me though, that Xeloda on its own could be given - but that it was more effective when combined with Avastin. I'm wondering even though your husband has his port out, whether your onc would give him Avastin via IV. They start the first does around 90 minutes and that goes OK, they lower it down to a 60 minute drop - and if that goes OK, all future drops are about 30 minutes long. Avastin cuts off blood supply to the tumor, essentially choking off their building blocks for spreading...like having a bridge out where you can't cross over.

    However, while they might recommend Avastin with Xeloda, he told me that you could just take the Xeloda alone. He is on the highest dosage I've ever seen - I was taking 4000 mgs a day. You did not mention the cycle he was on - is it 14 days on and 7 off?

    At that dose, toxicity is going to begin to build up pretty quickly. He will notice it in his feet primarily - what will happen is they will begin to crack and split, because the moisture in his feet will not be as plentiful. Then they will begin to peel like onions. It becomes hard to stand and walking and balance can be difficult because putting weight on them when they are tender, well it just hurts.

    Here's what can help you with that though. I'm sure Canada has some of this stuff at your pharmacy. Ask for Bag Balm - an udder cream with excellent emollient properties. Have your husband slather that all over his feet and then put socks on afterwards - this will help hold the moisture in and allow some relief for the pain. Have him do it first thing in the morning and then around dinnertime or before...and then right before bed.

    If he gets started on that now, you may be able to head this off early and this will help him.

    Also, watch for stomach pain and nausea - Xeloda was very hard on my stomach and it felt like heartburn - his dosage is high so this may be something he experiences too.

    My onc and I adjusted the dosages during my treatment. It got too bad for me, so we went with a 7-day on 7-day off cycle with 3 pills by morning and 3 pills by night @ 500 mg each. So we went from 4000 mgs a day down to 3000 a day.

    I hope this information helps you in some way - you seem like a nice lady and are highly regarded here from what I've read. I'll be thinking of you guys and praying for you too.

    Please tell us what happens - if I can be of any further assistance to you, just say the word.

    My best to you
    -Craig
  • trish07
    trish07 Member Posts: 138
    #7
    Xeloda Only
    My husband was on Xeloda only for over a year. We were able to keep his tumors "at bay" for that period of time. After that scans started displaying a small increase in size and he has just finished his 5th round of Oxaliplatin with Xeloda. No change, so we will be consulting with Dr. on 25th about next step. He cannot take Avastin [severe reaction].Talking about clinical trial. To me, just having no increase in size was a blessing, there is no cure for my husbands rare cancer. Hopefully it will work for you as well or better. He takes 4,000 mgs. per day, 14 on 7 off. He also has several nodules in lungs, the largest being 7mm.
    Trish
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #8
    trish07 said:

    Xeloda Only
    My husband was on Xeloda only for over a year. We were able to keep his tumors "at bay" for that period of time. After that scans started displaying a small increase in size and he has just finished his 5th round of Oxaliplatin with Xeloda. No change, so we will be consulting with Dr. on 25th about next step. He cannot take Avastin [severe reaction].Talking about clinical trial. To me, just having no increase in size was a blessing, there is no cure for my husbands rare cancer. Hopefully it will work for you as well or better. He takes 4,000 mgs. per day, 14 on 7 off. He also has several nodules in lungs, the largest being 7mm.
    Trish

    Thanks Trish
    I am hoping the Xeloda shrinks Bill's tumors or at least keeps them stable. We have an appointment next Friday, and I hope that the blood work comes back OK so he can continue.

    My thoughts and prayers are with you both!


    ((((HUGS))))

    Sue
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #9
    Sundanceh said:

    Hi Sue
    Hi Sue

    So very nice to meet you! I've heard alot of good things about you.

    I too am very sorry to hear about your husband - he has had more than his share and am sorry you are both dealing with this.

    My onc told me they usually combine Xeloda with Avastin for treatment after all of the big chemo is done, like Folfox or Folfiri. That's what happened to me, after the Oxy licked me, we stayed on Xeloda and Avastin until we discontinued all treatment and started watching and waiting.

    My onc did tell me though, that Xeloda on its own could be given - but that it was more effective when combined with Avastin. I'm wondering even though your husband has his port out, whether your onc would give him Avastin via IV. They start the first does around 90 minutes and that goes OK, they lower it down to a 60 minute drop - and if that goes OK, all future drops are about 30 minutes long. Avastin cuts off blood supply to the tumor, essentially choking off their building blocks for spreading...like having a bridge out where you can't cross over.

    However, while they might recommend Avastin with Xeloda, he told me that you could just take the Xeloda alone. He is on the highest dosage I've ever seen - I was taking 4000 mgs a day. You did not mention the cycle he was on - is it 14 days on and 7 off?

    At that dose, toxicity is going to begin to build up pretty quickly. He will notice it in his feet primarily - what will happen is they will begin to crack and split, because the moisture in his feet will not be as plentiful. Then they will begin to peel like onions. It becomes hard to stand and walking and balance can be difficult because putting weight on them when they are tender, well it just hurts.

    Here's what can help you with that though. I'm sure Canada has some of this stuff at your pharmacy. Ask for Bag Balm - an udder cream with excellent emollient properties. Have your husband slather that all over his feet and then put socks on afterwards - this will help hold the moisture in and allow some relief for the pain. Have him do it first thing in the morning and then around dinnertime or before...and then right before bed.

    If he gets started on that now, you may be able to head this off early and this will help him.

    Also, watch for stomach pain and nausea - Xeloda was very hard on my stomach and it felt like heartburn - his dosage is high so this may be something he experiences too.

    My onc and I adjusted the dosages during my treatment. It got too bad for me, so we went with a 7-day on 7-day off cycle with 3 pills by morning and 3 pills by night @ 500 mg each. So we went from 4000 mgs a day down to 3000 a day.

    I hope this information helps you in some way - you seem like a nice lady and are highly regarded here from what I've read. I'll be thinking of you guys and praying for you too.

    Please tell us what happens - if I can be of any further assistance to you, just say the word.

    My best to you
    -Craig

    Thanks!
    Craig,

    Thank you very much for your post. It has answered a lot of questions for me!

    Bill is on the 14 on, 7 off cycle. He is on day 10 now and has had the nausea, but he was give maxiran for that, and it does help. I am going to have him read your post, so that he knows what to look for with the feet. When we got his meds from the Cross Cancer Institute they gave him a package that contained a large pill case and a tube of the bag balm.

    I will ask about the Avastin, the Canadian government just approved paying for the drug up here. Our onc did say they had a couple of other treatments they can do if the Xeloda does not work, but I have everything crossed that it does, or at the very least it keeps it stable. How was your blood while on Xeloda?

    Bill was only 47 when he was dx'd and they figure he had it 8 - 10 years before they found it. They will start testing our daughter when she turns 30 next year. When people find out Bill has cancer and they start to say "Oh I am so sorry to hear that", I get on my soapbox and tell them not to be sorry, and then I ask if they have been scoped yet..... There are way to many young people being dx'd with this beast.

    We are currently working on our bucket list, and in the last 3 years we have managed to scratch a few things off the list. We just returned from Seattle having gone there to watch a couple of MLB games. For years we put things off saying someday we will get to it,
    and now we are making the most of it.

    Once again Craig, thank you for the info as well as the kind comments!

    While I have not posted to your treads I follow your case and you are in my thoughts and prayer's. What the world needs is a few more just like you!


    (((((HUGS))))

    Sue
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #10
    CanadaSue said:

    Thanks!
    Craig,

    Thank you very much for your post. It has answered a lot of questions for me!

    Bill is on the 14 on, 7 off cycle. He is on day 10 now and has had the nausea, but he was give maxiran for that, and it does help. I am going to have him read your post, so that he knows what to look for with the feet. When we got his meds from the Cross Cancer Institute they gave him a package that contained a large pill case and a tube of the bag balm.

    I will ask about the Avastin, the Canadian government just approved paying for the drug up here. Our onc did say they had a couple of other treatments they can do if the Xeloda does not work, but I have everything crossed that it does, or at the very least it keeps it stable. How was your blood while on Xeloda?

    Bill was only 47 when he was dx'd and they figure he had it 8 - 10 years before they found it. They will start testing our daughter when she turns 30 next year. When people find out Bill has cancer and they start to say "Oh I am so sorry to hear that", I get on my soapbox and tell them not to be sorry, and then I ask if they have been scoped yet..... There are way to many young people being dx'd with this beast.

    We are currently working on our bucket list, and in the last 3 years we have managed to scratch a few things off the list. We just returned from Seattle having gone there to watch a couple of MLB games. For years we put things off saying someday we will get to it,
    and now we are making the most of it.

    Once again Craig, thank you for the info as well as the kind comments!

    While I have not posted to your treads I follow your case and you are in my thoughts and prayer's. What the world needs is a few more just like you!


    (((((HUGS))))

    Sue

    Thank you Sue!
    That's so kind of you. I had no idea you read any of my posts and were following my case. I'm so touchd that you care enough to do that. Wow, there are many special people here. Thank you for prayers and I will certainly do the same for the both of you.

    On my bloodwork, I did OK with it mostly...what I found was the white count was low, but the Folfox did most of that I think. Xeloda would lower my platelet counts by a couple of thousand per cycle...but my immune system was compromised again by the Oxy.

    Overall, I tolerated it...I'm hoping that you can add the Avastin to his treatment. I feel it gives you some extra kick in the treatments. Sort of like the 1-2 punch.

    Xeloda by itself I'm told is not as effective without a partner...though they told me it was better than takin nothing at all...keeps things at bay as you said. It's an interesting drug, it goes in as one type of compound and when it detects cancer cells changes its metabolic composition over to 5fu.

    One last thing I remembered...you and your husband keep an eye on his blood pressure and how his heart is beating. Blood pressure may slightly go up, this is the drug. After 8 or 9 months, I would notice my heart skipping a beat like it was out of rhythm or something. Onc said it was nothing, but I don't know...something to watch in my opinion.

    I'm so glad to talk with you today...I needed a good post like yours tonight...I hope it all works and please let me know.

    I just got rediagnosed with Cancer for the 3rd time last week. Met to the pleura of my right lung. Pleura is the outer membrane surrounding the lungs...it's in a funny spot. I'm due to meet with a surgeon once they confirm that it is a go, so maybe in the next 30 days or less, I'll be getting this done. Post up chemo could follow again depending on what they find.

    Both of you take care...I'll be thinking about the both of you. I'll bet the weather is good in Canda right now, eh?

    Craig

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