Thinking about starting Xeloda

shrevebud
shrevebud Member Posts: 105
edited March 2014 in Colorectal Cancer #1
Hello All:

Saw my oncologist this morning because I have been running a temp all week. Did lots of lab and cultures - I don't expect anything to come back. The trial he had in mind for me at the NCI in Maryland is not going to work out and there doesn't seem to be any other trials that I would qualify for going on right now - I've been on all the standard medicines for advanced colon cancer. The radiation spheres are still an option, but I'm not keen on having that done and have told him that. I can have more chemo-embolization done - I've had that done twice and it was very hard on me both times - the only time I have had to take morphine at home for pain. We talked about starting Xeloda. I've had 5FU (the pump deal at home) so I'm familar with that. I think someone on this site posted something about Xeloda doing things to their feet. It might have been Craig (Sundanceh). If I have that right and you read this, please tell me again about the feet/skin deal you experienced. I can't let that stop me from taking a medicine that could help me - I try not to worry about side effects until they start happening to me - I think I need to give it a try and see how it goes. We also talked about the hepatic pump as an option for the future and he thought that was something that could help me later, but thinks we ought to try the oral route before having surgery to have a pump implanted. I tend to agree with that thinking. It's my understanding that 5FU, Xeloda and the FUDR that they use in the hepatic pump are basically all the same medicine or are very similar in structure and the way they act in the body. If I have that wrong, someone please let me know. Well all, hope everyone has a good night. I'm off to bed soon. Thanks in advance for any and all replies that I might receive. Roy

Comments

  • mac1212
    mac1212 Member Posts: 31
    Xeloda
    I took Xeloda while having radiation. The foot and hand syndrome started about 2 weeks in. I used to walk 2 miles a day but had to give that up when my feet started to get irritated. I used lotion and wore slippers around the house to keep them from getting to bad. I also took aleve or advil to cut down the irritation. I did not really have problems with my hands. I took it for just over a month. Good luck! Brian
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Hepatic pump
    Roy,

    I am an "owner" of an HAI pump and to my understanding the physiology of how the chemo works in the body (systemic vs pump) is quite different. Chemo via an HAI pump is directed right into the liver and as a result the liver receives very concentrated doses of the drug with minimal side effects. By the time the liver processes systemic chemo the concentration of the drug is diluted. Perhaps you could look into the HAI pump a bit further. A friend of mind at the office I go to was told months back that he was inoperable in the liver and he had spent a year on chemo trying to get his liver mets to shrink. He had the liver pump in for 5 months and last I saw him he was recovering from his liver resection. The HAI pump can be very effective. If you want any more information please post. Phillieg and ADKER and I all have had the HAI pump implanted and we all go to the same oncologist.

    All the best,
    Amy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    It Was Me, Roy
    Howdy, Roy

    You were right - it was me - thanks for remembering.

    I was on the Xeloda for 8 months. I was doing on the high end, 4000 mgs a day, and on the low end, 3000 mgs a day. Each pill was 500 mgs.

    We tried different cycles of the drug...we started off with the typical 14 day on / 7 day off, 4 pills by morning and 4 more by evening. At the end, we were doing it 7 days on / 7 days off, 3 pills by morning, and 3 more by evening.

    The guy never gave me a clue as to what to expect...and toxicity will build up quickly. My fingertips got red and I type alot for work, and it did not become a huge issue there.

    But, it hurt me real bad in my feet. What happened was my feet began to crack and split open on the bottoms from the toes back to the heel...sunburnt red soles and the cracks and splits looked like ditches...very painful. It was hard to even maintain your balance and putting shoes on for work and trying to walk and stand was very difficult. Literally whole part of my feet would peel off like onions.

    What worked for me was a product called BAG BALM. It can be found at your local drug store in a tin can. It is an udder cream with excellent emollient properties. Slather it all over your feet and put on socks to retain the moisture. Put it on 3x a day...in the morning, in the evening, and right before bed....do it more if you need to.

    If you start on it from the beginning, you might head off any problems before they start - you'll certainly be in a better position being pro-active, instead of re-active, like I went through.

    I always spread the word about this when I see someone on Xeloda, because of the pain I went through and nobody told me about it, when they easily could have. Because I was working, I had to wear shoes and that made it more difficult after the symptoms were already there. I would put on slippers at night and that helped.

    The other thing I wanted to tell you about was that Xeloda is very hard on the stomach with those kind of dosages. Just kind of a burning and nauseous feeling all the time...you can take some anti-nausea meds to help with that condition. Put something soft and pleasing into your stomach to help dry up all of that stomach acid.

    Hopefully, this will help you some while you take this. I never had issues with the 5fu pump and Xeloda is basically that in the pill form...but what a beating your stomach and liver takes from this drug - it's nasty but is effective.

    That's the cold hard truth, but I believe in telling everybody what to expect, or at least what happened to me.

    I'm wishing you all the best and let me know if you have any questions or concerns.

    Take it EZ, Roy

    -Craig
  • shrevebud
    shrevebud Member Posts: 105
    Thanks
    Hi Amy, Brian and Craig:

    Thanks for replying to me about the different subjects. It's good information. Thanks Craig too about the info on the stomach upset - I've had a gut ache most of this afternoon and this evening - it's kind of bad - don't know what's causing that - probably this other medicine that I take for another condition. I'll just have to be careful if I start on this new drug - I called the nurse today and she told me the Xeloda would probably be a total of 6 pills a day in 2 doses, so that's not too bad. Wish it would just be 1 or 2 pills! Wishful thinking on my part! I'm going to run now. Hope all of you have a good evening. I'll post again when I decide what I'm going to do. Have a good weekend. We're expecting rain here. Take care. Roy
  • shrevebud
    shrevebud Member Posts: 105
    Exloda
    Hello All:

    I started Xeloda tonight with dinner. I can't believe it's so many pills to take - it's 12 pills a day divided into 2 doses. I already take several pills twice a day for something else and am wondering how this is going to go. I took some nausea medicine with it just in case. I hope I can get used to it without a lot of side effects hitting me. I've read and have gotten some good information from others on here about some of the side effects (esp. the foot thing). I'll see how I feel in the morning. Hope everyone has a good night. Roy
  • Mike49
    Mike49 Member Posts: 261
    shrevebud said:

    Exloda
    Hello All:

    I started Xeloda tonight with dinner. I can't believe it's so many pills to take - it's 12 pills a day divided into 2 doses. I already take several pills twice a day for something else and am wondering how this is going to go. I took some nausea medicine with it just in case. I hope I can get used to it without a lot of side effects hitting me. I've read and have gotten some good information from others on here about some of the side effects (esp. the foot thing). I'll see how I feel in the morning. Hope everyone has a good night. Roy

    On Xeloda now
    Roy, The Bag Balm works trust us on that, the stomach upset got better with time in my case.
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    xeloda
    I did Xeloda with radiation but only 2000 mg for six weeks. It was after the surgery that they really hit me with xeloda 5000 mg a day for 15 weeks. I developed bad hand and foot syndrome which is still affecting me three years later. It is difficult to walk for prolonged periods and walking without shoes on hard floor -no way. One of my fingers has some nerve damage. Recently, I developed a blood clot in my left leg which may or may not be related to the xeloda. During treatmant I loss some toe nails and both my hands and feet dried up and split open causing bleeding all the time. I had to wear cloth gloves and socks 24-7 with bag balm generously applied. The nerves are even worst. I remember being sound asleep and for no apparent reason my left foot would make me jump up in extreme pain. I describe it as being stabbed in the foot and having the knife twisted. The pain lasted 3-4 minutes. My hands while being treated were so painful that I had to let my nails grow out and type on a key board ( computer operator) without touching my fingers. The pain in my foot still happens now three years later but rarely and lasts only 3-4 seconds. It took alot for me to complete the 15 weeks. I can't tell you how close I came to quitting. I had to take max dose because I'm a pretty big guy. I have had broken bones had dislocations but I have never experienced such pain. Even the night after my surgery when the nurses screw up my morphine pump and I got no pain relief for 14 hours it wasn't as bad as weeks 14-15 on xeloda. I started to have difficulty choking down the pills just the smell of them was enough. Now having terrified you I am still here typing this. It is likely I was sensitive to the drug more than most so it may not affect you as badly. More importantly although I am nothing like I used to be physically, I am still NED. The rub is my surgeon said he felt confident I would not have a reoccurrence. But my oncologist insisted saying it would reduce my reoccurrence rate from 20% to 7%. Knowing what I know now I probably would have taken my chances. But I was a IIIb with no mets to any nodes and a type 3 (slow growing encapsulated) cancer. Did xeloda save by life by killing those micro-nasty cancer cells? No way to know if they were even there. My advise is do the drug. The pump with 5-fu has its own concerns for me. Would I do it again? Ask me in two more years when I reach 5 years NED and you are on your second year NED. Good Luck!
  • shrevebud
    shrevebud Member Posts: 105
    LOUSWIFT said:

    xeloda
    I did Xeloda with radiation but only 2000 mg for six weeks. It was after the surgery that they really hit me with xeloda 5000 mg a day for 15 weeks. I developed bad hand and foot syndrome which is still affecting me three years later. It is difficult to walk for prolonged periods and walking without shoes on hard floor -no way. One of my fingers has some nerve damage. Recently, I developed a blood clot in my left leg which may or may not be related to the xeloda. During treatmant I loss some toe nails and both my hands and feet dried up and split open causing bleeding all the time. I had to wear cloth gloves and socks 24-7 with bag balm generously applied. The nerves are even worst. I remember being sound asleep and for no apparent reason my left foot would make me jump up in extreme pain. I describe it as being stabbed in the foot and having the knife twisted. The pain lasted 3-4 minutes. My hands while being treated were so painful that I had to let my nails grow out and type on a key board ( computer operator) without touching my fingers. The pain in my foot still happens now three years later but rarely and lasts only 3-4 seconds. It took alot for me to complete the 15 weeks. I can't tell you how close I came to quitting. I had to take max dose because I'm a pretty big guy. I have had broken bones had dislocations but I have never experienced such pain. Even the night after my surgery when the nurses screw up my morphine pump and I got no pain relief for 14 hours it wasn't as bad as weeks 14-15 on xeloda. I started to have difficulty choking down the pills just the smell of them was enough. Now having terrified you I am still here typing this. It is likely I was sensitive to the drug more than most so it may not affect you as badly. More importantly although I am nothing like I used to be physically, I am still NED. The rub is my surgeon said he felt confident I would not have a reoccurrence. But my oncologist insisted saying it would reduce my reoccurrence rate from 20% to 7%. Knowing what I know now I probably would have taken my chances. But I was a IIIb with no mets to any nodes and a type 3 (slow growing encapsulated) cancer. Did xeloda save by life by killing those micro-nasty cancer cells? No way to know if they were even there. My advise is do the drug. The pump with 5-fu has its own concerns for me. Would I do it again? Ask me in two more years when I reach 5 years NED and you are on your second year NED. Good Luck!

    Xeloda
    Hi Lou Swift:

    Thanks to sharing your story and your experience with Xeloda. Sorry you had all that pain, etc. from the Xeloda. It's great that you have made the 5 year mark (NED). I'm not NED - I still have active tumors in both lobes of my liver and I have a very small, a few millimeters sized spot on one of my lungs - it apparently is not growing so we don't really know if it is metastatic disease or not and my oncologist is not worried about it - not causing me any problems and my labs and all are really good considering and my CEA is not that high, although there is some discussion about that test in general as an indicator. I'm going to close now, but thanks for replying to me. Have a good night/day tomorrow. Take care. Roy
  • Devasted
    Devasted Member Posts: 185
    shrevebud said:

    Xeloda
    Hi Lou Swift:

    Thanks to sharing your story and your experience with Xeloda. Sorry you had all that pain, etc. from the Xeloda. It's great that you have made the 5 year mark (NED). I'm not NED - I still have active tumors in both lobes of my liver and I have a very small, a few millimeters sized spot on one of my lungs - it apparently is not growing so we don't really know if it is metastatic disease or not and my oncologist is not worried about it - not causing me any problems and my labs and all are really good considering and my CEA is not that high, although there is some discussion about that test in general as an indicator. I'm going to close now, but thanks for replying to me. Have a good night/day tomorrow. Take care. Roy

    Xeloda
    Roy,

    My husband dx'd with rectal cancer, mets to liver had 5 1/2 weeks of Xeloda and
    radiation. Side effects were only occasional nausea had med's to correct.
    Although, there were lots of pills, seemed much easier than the FOLOX / Avastin
    he just started. He did use lots of "udder butter" on feet and hands and didn't
    have any trouble. The onc. gave him a package with a sample of udder butter
    and he did always wear socks, so maybe that helped.

    Best of luck, we're thinking of you...
  • taraHK
    taraHK Member Posts: 1,952 Member
    my experience
    I had less dramatic side effects than some others. My feet were affected (dry skin, blisters, peeling). But not painful and didn't interferewit normal functioning. I used to like to walk for my main exercise (hiking, track, treadmill) and I did have to give that up -- almost completely (30 min gentle walking was OK). And I had to give up high heels! (tragic, right). I had very mild nausea for a few days and upset tummy for about 1 day. Overall, I found it very manageable and was fully prepared to do it long term (maintenance chemo). Some other stuff happened this summer so I am off it now. My feet have fully recovered! Back to the walking....

    Good luck

    Tara