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Thread: new here, husband on Xeloda, stage 4 colon cancer to liver

  1. #1
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    new here, husband on Xeloda, stage 4 colon cancer to liver

    First, I am glad I found this forum, it has been very helpful. My husband diagnosed 4 weeks ago with Stage 4 recurrent colon cancer metastised to liver, inoperable, given 9 to 12 month prognosis without treatment, 12 to 14 with. A month has passed now. He is on Xeloda, 1000mg twice daily for 14 days on and 7 days off. I have read some of the threads with comments about Xeloda, but wondered if anyone else could elaborate further. He is in his first round of treatment. He will be 75 in april, and diabetic as well. Thank you.

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    I meant to say, he is on 2000 mg twice daily of Xeloda.

    He is very very tired, has metal taste in mouth, and now leg muscle pain from the meds.

  3. #3
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    DEAR ZAPORA,

    Sorry to hear what your husband is going through, have you tried looking on the internet about Xeloda, just go to google and type in side effects of Xeloda and you will find many sites. If you are not to sure what to do let us know and we could do it for you. Just let us know. God bless you and husband and stay positive and keep going, you are not alone.

    BEST WISHES BARB

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    Yep, I have been on the internet daily, and have researched Xeloda, and he continues to experience more side effects daily, he is on day 11 of the first round of treatment, he slept most of today, with his age, and other medical conditions, I highly doubt that he will be able to withstand another 4 rounds of treatment. He will be 75 on april 20th, has has multiple epidural pain management shots with regard to pinched nerve in his lower back, had horrible foot pain in his right foot, we are awaiting special ortho shoes for that condition, he has type 2 diabetes, which his blood sugar has been very high since starting the chemo. He has lost yet another 2 pounds the past few days, I suspect the cancer is spreading beyond the liver, he has a Dr. appt. next week, another CEA blook test too. Our boys are young, ages 16, 20 and 22, I am very much younger than him, and hate that my boys will see him die of such an agonizing death. They saw my very best and dear friend die of pancreatic cancer 2 years ago, she died within a month of diagnosis.

    Does anyone else have any other comments about Xeloda? He has become weaker and weaker with this treatment. Muscle pain, metal taste, drooling, eyes watering,

    Thank you for any comments you can give that have endured this, and any experience with Xeloda.

  5. #5
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    Hello Zapora,

    I'm sorry to hear about your husbands situation -- words really cannot say enough.

    I get and IV dose of Oxiliplatin every 3 weeks and take 2000mg of Xeloda twice a day for the first two weeks of three weeks. The side effects I have seem to be almost totally from the oxiliplatin. After a week and a half I feel pretty OK except for some neuropathy from the oxiliplatin. My experience has lead me to believe that I am really not having side effects from the Xeloda -- however everybody is different. I don't believe you mentioned whether they were giving him any other chemo drugs. If he is just on the Xeloda it goes to show that these drugs effect EVERYBODY differently.

    Take care and best wishes,

    Mike
    Diagnosed with stage 3C colon cancer in the sigmoid colon 2/6/09 at age 35/36. Colon was resected and found 12 of 22 nodes were affected. The last CT scan found a 2mm node of "unknown significance" in my lung (possible stage IV?). Chemo regimen is Oxaliplatin once every three weeks and Xeloda twice a day for the first two weeks. Third week is rest period. Hoping for the best and actually staying quite positive.

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    Thank you for all of your comments, and encouragement, he is only taking the Xeloda, we have limited income, and he has medicare, no supplemental insurance. He has severe neuropathy from the diabetes. Mostly in legs and feet.

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    Hi

    the Chemo seems to effect everyone differently. My husband was on Xelda but due to diarrhea problems with being in Hosp for 2 weeks we had to stop the Xelda. He also has a hard time taking Erubtex due to reaction with b/p and hives. He has managed to controll this with pre meds and is taking Erubtex every week. But again each person is different. You need to let the Dr.s know each little side effect so they can change or give you something to help control the side effects. (Had treatment yesterday with Erbutex, Oxi, Lev 5Fu and now we have the hiccups) Just the course it goes through. Good Luck and keep the Drs. posted
    Tam

    Husband is 55 years old, has metastic colon cancer, with Lung, Liver, kidney currently Colon surgery 5/07 with chemo, 9/08 Chemo started
    10/08 Scan in Dec 08 (Grown) Scan Feb 09 (Grown with liver, both lungs , Kidney)
    3.5 cm lung, 5 cm kidney, 4.5 renal, 2.6 iliac lymph etc. CEA 166 8/25/09 Nothing has slowed it down, we have stopped chemo, due to side effects and lack of any results, he is admitted to Hospice on 12/30/09. We will enjoy what we have Husband passed away 2/14/2010

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    Top User DulcimerGal's Avatar
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    I am so sorry your husband is having all these side effects from Xeloda, if indeed it is the drug that is causing all these symtoms.

    I completed 5 months of Xeloda last December.
    My side effects were rashes on the hands, arms and chest, and worse - the numbness in my feet (neuropathy) I took 1500 mgs daily for 14 days and 7 off like your husband. I also had a lot of diarrhea.
    My Doc tried reducing my dosage, and sometimes made me go 2 weeks between doses to relieve the symtoms, but as I got near the end - I just sucked it up and forced myself through it to make sure I gave myself the best shot at keeping the cancer at bay.

    I was not stage 4 though.....some of these effects as you say - may be the spreading cancer rather than the meds. though everyone is different.
    I did not get the metal taste, or the leg cramps...

    Hope this helps - we all feel really bad reading your husbands struggles, please hang in there

    Cheers
    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

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    after his 7 day break, started up 2nd round of Xeloda last friday, had to stop taking it yesterday, due to hand/foot syndrome, and rash on feet. Dr. gave him prescription for that to apply to hands and feet, has to clear up completely before starting up again on treatment, Dr. said they will decrease the dose to half of what he was taking. He was sleeping much of the day, and so extremely tired. His cea was up last week, but Dr. said it would take 2 to 3 rounds of treatment to show if the chemo was doing it's job to keep cancer at bay.

    I am discouraged, as I feel that with reducing the dose, by half, I wonder how much more time it will give him.

    Thanks again for everyone's comments and encouragement.

    Really hard right now, my dad, also dying, in maybe days, end stages of Parkingson's and Alhzeimers. Hospice came into the Nursing home to help with that.

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    So, he started back on the Xeloda on May 6th, only to get the same symptoms back, hand/foot syndrome, Dr. said he can restart this sunday, only 1500 mg twice a day.

    Hopefully with a lower dose he won't get the side effect back again.

    Chemo by iv was mentioned, with 5fu, leucovorin, avastin, and oxipalitan, but to the cost of $10,000.00 per treatment, with only medicare and no supplemental, we can't afford to pay the co pay.

    So, for now hoping the lower dose of xeloda will work.

  11. #11
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    HI ZAPORA,
    Sorry to hear about your husband, we pray for you both and hope you both keep going .
    BEST WISHES BARB

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    After 3 times trying to restart the Xeloda, he had to quit after 4 days on treatment, last time, had to quit for 14 days, he started back up again a week ago wed. on only 1000 mg a day. So far so good, After 14 days, will be off 7, then up the dose to 2000 mg a day.

    The good news is last week his CEA was down again, even after being off the chemo for 14 days.

    He has horrible foot problems due to neuropathy due to type 2 diabetes, and can hardly walk, and swelling in both legs and feet, going to Vascular Surgeon Dr. next monday, I just hope the aneurisms is stomach and both legs, haven't grown to the point where he will need surgery, if so, it will be up to all Doctors involved if he can manage any type of surgery.

    He is 75 years old with horrible back and foot pain. Has had multiple epidurals for back pain management.

    But I am thankful he has been able to get through almost 14 days now on the Xeloda.

    He is miserable. He can barely walk, But at least his CEA was down.

    Thanks for caring.

  13. #13
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    Hi Zapora

    I cannot imagine being 25 years older and going through this. My faith in God and a supportive wife and family have carried me. I am taking 1500 mg 2x daily 2 weeks on and a week off like your husband. Right now I am in post op chemo. I also had Radiation and Xeloda pre op. After surgery the Surgeon told me I had a complete reaction to the treatments as there was no cancer found in the section of my colon they took out.

    The Xeloda did make me tired and is making me tired, also my feet hurt when I stand for any length of time. After My first round of chemo was done I got flu like symptom syndrome for a week. The Xeloda also gives me the runs. I take Metamucil as it helps bulk up my stools and gives me heads up for when it is time. I also have got to go easy on fresh fruits and veggies since they have a tendency to increase frequency of my bathroom visits.

    I will be praying for you and your family

    Bob
    50 year old male
    Oct 2008 diagnosed w/Low Rectal Cancer
    Stage 3
    Mar.19 2009 AP Resection
    Oct. 23 2009 finished post op chemo (Xeloda)

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    on July 20th, his cea went from 9.2 to 16.6, he is now on 2500 mg. per day of Xeloda, and has another cea on monday, aug. 17th, Dr. said if it doubles again, will take him off the meds, do another pet scan, then decide what to do next. he is down to 174 pounds, from 189 when first diagnosed, at the end of March, still eats good, has good appetite, but I fear the cancer is getting the best of him, he struggles to walk due to the neuropathy in feet, and has had a pain management epidural on a monthly basis since April, for back pain.

    It's doubtful that we would be able to afford any further iv chemo, as he only has medicare and no supplemental insurance.

    He is about 5 months into this now, and I can see him failing.

    I am weary and worn with caring for him, helping him to dress, etc., and also caring for my sons. I am praying the cea is not going to double this monday. Then, I don't know what we will do.

    I feel so bad for "Star", she has been such an "encourager" here to everyone, I pray that God will comfort her and her husband.

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    He was 75 in april, has had a good life, and stays positive, which is good.

    I am 57, and doing my best to stay strong for him, and the kids, but is taking a toll on me. My best friend died of pancreatic cancer 3 years ago, and I know what to expect, I have seen people suffering from cancer in their last days.

    I hate this monster of a disease!

  16. #16
    Top User DulcimerGal's Avatar
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    Hi Zapora,

    What is your husband's name?
    I am already praying for REB and Star - so it's better if the prayer is specific - rather than "Zapora's husband...."

    I too have watched cancer patient's die, my father had cancer. Fortunately he was on morphine at the end - so he slipped away peacefully. I understand your trepidation.

    How would you like me to pray?

    For REB and Star I pray for a full and complete cure, and the miracle of complete healing. As I said - I truly believe in the power of specific prayer, especially by name.

    Just to cover things though - I also pray that if that is not God's will - that they will have a fulfilled life and a peaceful passing of their soul in the
    hour of death. Gotta cover all bases.....

    I will also pray for you to have strength and peace whatever the outcome.
    I pray every night, and if by chance I fall asleep - I catch up the next morning on my way to work - so I will not forget you guys!
    We are all hanging in there with you.

    Cheers
    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

  17. #17
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    Zapora, you need to call in the support troops. Are there friends and relatives who can help you out? You need help with and breaks from, all your present tasks so you can come up for air, breathe, and return to your own support roles with energy.

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    His CEA was 16.1 down a bit from 16.6, had to stop Xeloda again, going back on lower dose next wednesday, the hand/foot syndrome raised it's head again. The neuropathy in feet is so bad, very difficult to walk.

    Thank you Dulcimer for your prayers,

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    Three weeks ago Jack's cea elevated to over 22. Dr. told him not to take the Xeloda anymore, because it's not working, and any further treatment would be 20% or less effective in treating the cancer. It was pretty discouraging. We go back monday for another cea. He is pretty much disabled, with the severe neuropathy in feet, and back pain, don't think he can distinguish between the back pain and any cancer related pain, he has lost weight, is losing appetite too.

    He has had a couple anxiety attack issues, in the past couple weeks, I called the Dr. one night cause it scared me, but the Dr. just said to leave him alone.

    I got a wheelchair, so at least have been able to get him to church a couple times, and once on a friday night to our son's football game.

    Sleeps much of the time.

    We are almost 7 months into 9 to 12 month prognosis. Not good.

  20. #20
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    Big hugs to you Zapora, and Jack.

    First of all, there is something that can be done about the panic attacks. Your doctor can prescribe Ativan to your husband, which has a pleasant, calming effect and yet does not change your personality and does not leave you feeling groggy. He may feel as if he's had a glass or two of champagne at first, but his body will habituate quickly and that effect will go away. And it will really, really help with the panic attacks. I have had them and they are not pleasant.

    If your doctor won't give him Ativan (a benzodiazepine), find someone who will.

    I wonder too if the panic attacks would also be soothed by bringing a hospice counsellor and nurse onto your team? They are wonderful in helping you live the best life and most comfortable life you can under what are very difficult circumstances. It is easy in your position to be overwhelmed by fear and dread, I know, but the hospice people can really help with that.

    My prayers are with you both, pet.

 
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