Xeloda Rash Treatment Questions and General Support Needed

devotion10
devotion10 Member Posts: 623
edited March 2014 in Colorectal Cancer #1
My husband has developed, after 9 days of Xeloda treatment, a serious itchy rash on his extremities. He has completed four months of 5FU, Avastin, and made it through four Oxi treatments with calcium-magnesium infusions before neuropathy resulted in that treatment being removed. He was switched from the 5FU to Xeloda to ease the burden of the IV treatments and home pump. The Avastin is being continued while on the Xeloda. His oncologist suggested he stop the Xeloda when the rash appeared. In a week, if he has healed the doctor will have him resume the Xeloda treatment but reduce the dosage down from the current 4000mg.

My husband (of 32 years) began this journey in July 2009 when one cancerous polyp was discovered during a routine colonoscopy. A transanal excision was performed at a Houston hospital for a what was deemed a stage one cancer. He was monitored every three months with scan and cea tests and he was considered cancer-free .... then one year after the transanal excision, his cea elevated slightly and pet scans revealed he had stage four recurring cancer with mets to his liver and lungs. He has been told surgery is not an option to cure.

Everyone was shocked. He never felt any symptoms and was very healthy ... until he began to receive chemotherapy treatment. Now since the chemo has started he feels he is being slowly poisoned. He is very disheartened and cannot see why he must endure these treatments when there is no chance his cancer can be cured .... he is unsure that the quality of life that chemo offers is sufficient to endure it when he know that his cancer is terminal.

I guess our immediate need is to see if anyone else has experienced a Xeloda rash so that I can get him out of this present crisis. Any other support is also welcome.

Comments

  • Paula G.
    Paula G. Member Posts: 596
    Hi,
    My husband is on Xeloda

    Hi,
    My husband is on Xeloda and the only thing he has had is the hand and foot thing. They had to reduce is dose from 5000 mg. a day to 4000 and now he is on 3000 mg a day. He is also stage 4 with mets to his live, lungs and right adrenal gland. The Xeloda has been working at shrinking some of the tumors but his CEA has gone up. He has a scan next month. Surgery isn't an option for him either.So far anyway and it doesn't look like it will be. He seems to tolerate the Xeloda okay. Looks forward to his week break!
    It may be an alergic reaction....I am sorry he is disheartened. It is so hard. My thoughts are with you and your family. Paula
  • devotion10
    devotion10 Member Posts: 623
    Paula G. said:

    Hi,
    My husband is on Xeloda

    Hi,
    My husband is on Xeloda and the only thing he has had is the hand and foot thing. They had to reduce is dose from 5000 mg. a day to 4000 and now he is on 3000 mg a day. He is also stage 4 with mets to his live, lungs and right adrenal gland. The Xeloda has been working at shrinking some of the tumors but his CEA has gone up. He has a scan next month. Surgery isn't an option for him either.So far anyway and it doesn't look like it will be. He seems to tolerate the Xeloda okay. Looks forward to his week break!
    It may be an alergic reaction....I am sorry he is disheartened. It is so hard. My thoughts are with you and your family. Paula

    Thank you Paula for your response
    I wish you and your husband the very best on this journey which we are learning can be rough. It sounds like he has found the right dosage for the Xeloda which is still effective ... this is what I wish for my husband -- that by reducing the dosage he can manage the treatment. Any surgery that has been suggested for my husband would be palliative, not curative, so we are cautious with taking that course. The Xeloda is promising as it is a welcome alternative to the hospital infusion and home pump. Is your husband also taking Avastin? Did he originally have surgery and he cancer returned as it did for my husband? We also face scans next month, the last showed minor shrinkage in the liver and stable in the lungs and abdomen. -- Cynthia
  • Jaylo969
    Jaylo969 Member Posts: 824
    No rash here but...
    I have had almost all the rest of the listed Xeloda side effects..even the "not so common" ones. I took 5 treatments of Folfox and couldn't endure the oxi.Next I was put on 3,300 mg Xeloda, 3 wks later 3,000 mgs., 3 wks later 2,000 mgs.I am not tolerating that very well either. The horrendous fatigue is my worse complaint...the rest I can deal with. Right now I am on a 2 week break from Xeloda.

    Hopefully the reduced dosage will be just what your husband needs. Reducing my dosage stopped some of my symptoms for awhile.

    Best wishes to you and your husband. I hope he will start to feeling better and the rash heals.

    -Pat
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Thank you Paula for your response
    I wish you and your husband the very best on this journey which we are learning can be rough. It sounds like he has found the right dosage for the Xeloda which is still effective ... this is what I wish for my husband -- that by reducing the dosage he can manage the treatment. Any surgery that has been suggested for my husband would be palliative, not curative, so we are cautious with taking that course. The Xeloda is promising as it is a welcome alternative to the hospital infusion and home pump. Is your husband also taking Avastin? Did he originally have surgery and he cancer returned as it did for my husband? We also face scans next month, the last showed minor shrinkage in the liver and stable in the lungs and abdomen. -- Cynthia

    Cynthia.............Something Positive to Ponder on...
    Much to often we "Can't find the forest for the trees", its an old saying that my dad used all the time and for the most part when he said it,it normally fit. What we need to look at is not that it is terminal. If the treatment is showing minimal shrinkage in the liver and stable in lungs and abdomen then he is showing improvemnt in my opinion. Alternate treatments for incurative patients are to me another way of buying more time until another new treatment comes along to lengthen ones chances of survival until there is a cure. So to me as long as there is any type of care be it pallative or curative then there is always the hope for cure, and that is the thought to hold onto when there seems to be nothing favorable to clutch to....Much Love and Hope to you and yours, Clift
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    Jaylo969 said:

    No rash here but...
    I have had almost all the rest of the listed Xeloda side effects..even the "not so common" ones. I took 5 treatments of Folfox and couldn't endure the oxi.Next I was put on 3,300 mg Xeloda, 3 wks later 3,000 mgs., 3 wks later 2,000 mgs.I am not tolerating that very well either. The horrendous fatigue is my worse complaint...the rest I can deal with. Right now I am on a 2 week break from Xeloda.

    Hopefully the reduced dosage will be just what your husband needs. Reducing my dosage stopped some of my symptoms for awhile.

    Best wishes to you and your husband. I hope he will start to feeling better and the rash heals.

    -Pat

    Cynthia, I totally agree
    Cynthia, I totally agree with Clift. I was dx in March 2009. Mets to liver and lung. Surgery not an option. I have been doing chemo since. I still work full time as a teacher. I did folfox and am currently on Xeloda and Avastin. I have tolerated the Xeloda . I did not have a rash. I do get very dry cracked hands and feet. This board will be a great help to both of you. Brenda
  • pf78248
    pf78248 Member Posts: 209
    Xeloda experience
    My husband also took that drug but in a lower dose. It was for maintenance while he was waiting for a liver resection. Unfortunately, he didn't have that kind of side effect but it sure didn't make him feel good, either. I am really sorry he's having such a hard time. Are you absolutely sure he is terminal? Many on this board also have mets to the liver and lungs and I am sure you will hear from them. They are managing the cancer as a chronic disease and many have been doing it for several years. So you might need to go to another surgeon for an opinion. It took us three before we went to M D Anderson and got the right doctor. He's my hero now. Every day of living is better than the alternative, so make sure you are going to doctors who aren't giving up. This battle is so hard but please don't give up hope. I wish you both the very best. You will get a lot of support and love from this board, so keep posting.

    Hugs and Healing,
    Priscilla
  • KATE58
    KATE58 Member Posts: 299
    pf78248 said:

    Xeloda experience
    My husband also took that drug but in a lower dose. It was for maintenance while he was waiting for a liver resection. Unfortunately, he didn't have that kind of side effect but it sure didn't make him feel good, either. I am really sorry he's having such a hard time. Are you absolutely sure he is terminal? Many on this board also have mets to the liver and lungs and I am sure you will hear from them. They are managing the cancer as a chronic disease and many have been doing it for several years. So you might need to go to another surgeon for an opinion. It took us three before we went to M D Anderson and got the right doctor. He's my hero now. Every day of living is better than the alternative, so make sure you are going to doctors who aren't giving up. This battle is so hard but please don't give up hope. I wish you both the very best. You will get a lot of support and love from this board, so keep posting.

    Hugs and Healing,
    Priscilla

    I am on xeloda now and was
    I am on xeloda now and was on it a few years ago as well.
    an itchy rash sounds like an alergic reaction.
    my palms and the bottoms of my feet turn red sometimes
    and my skin gets dry and flaky ,but no itchy rash.