day 5 of Xeloda

dmj101
dmj101 Member Posts: 527 Member

Ok.. so far..

So far no sideeffect.. How long were you on this before you felt any sideeffects.

I took this drug for one week last year untill I switched onc's looking for a more progressive treatment and cannot recall if I had any sideeffects.

I know I am jinking myself asking this.. but knowledge is power. right...

on a side note.. I saw the therapist last night.. she told me I am a rather well adjusted stage 4 cancer patient and doesn't really understand why my onc thought I needed her assistance.. hahaha... well adjusted.. me??

Happy Spring everyone!

Donna

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Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    Hi Donna

    Sorry, I can't help you with first hand knowledge, but Xeloda is what JBG takes. I know it is one of the "easier" chemos as far as side effects, for her.

    And girl, you are definitely "well adjusted". What a phrase! LOL You are caring, compassionate, intelligent, attractive and a friend to everyone. In this day and age, cancer or not, you're well adjusted to life.

    Luv,

    Wolfen

  • tachilders
    tachilders Member Posts: 313
    Xeloda is converted to 5FU in

    Xeloda is converted to 5FU in the body, so teh side effects are the same as 5FU (diarrhea, mouth sores, nausea, etc..).  I think the side effects are generally milder with Xeloda because you are taking the same dose over a longer time (2 weeks vs. 2 days for 5FU infusion).

     

    Tedd

  • keystone
    keystone Member Posts: 134 Member
    Xeloda

    I try to catch anyone that has questions about Xeloda because my husband did fine the first 10 days or so then got very sick with it. I read that Folic Acid in the diet or as a supplement increased the side effects of it. We cut out breads,cerials,pastas and anything else that was fortified with Folic Acid and he was a different person! I hope you don't have problems but if you do keep this in mind. I have shared with others having trouble and it helped them also. Stephanie

  • keystone
    keystone Member Posts: 134 Member
    Xeloda

    I try to catch anyone that has questions about Xeloda because my husband did fine the first 10 days or so then got very sick with it. I read that Folic Acid in the diet or as a supplement increased the side effects of it. We cut out breads,cerials,pastas and anything else that was fortified with Folic Acid and he was a different person! I hope you don't have problems but if you do keep this in mind. I have shared with others having trouble and it helped them also. Stephanie

  • AnnLouise
    AnnLouise Member Posts: 276 Member
    Xeloda......

    Donna, I am on xeloda for the second time. Last year I was on it along with oxy and avastin for 8 rounds and now by itself. I find it very manageable... I take zofran and lomotil 1/2 hour before the pills morning and night and make sure to put lotion on my hands and feet. Starting my fourth round on Saturday....a little fatigued but able to function and enjoy life. Please keep me posted and any questions, please feel free to ask.  Hope you continue to do well......-~ Ann

  • dmj101
    dmj101 Member Posts: 527 Member
    wolfen said:

    Hi Donna

    Sorry, I can't help you with first hand knowledge, but Xeloda is what JBG takes. I know it is one of the "easier" chemos as far as side effects, for her.

    And girl, you are definitely "well adjusted". What a phrase! LOL You are caring, compassionate, intelligent, attractive and a friend to everyone. In this day and age, cancer or not, you're well adjusted to life.

    Luv,

    Wolfen

    Thanks Wolfie,,, your family

    Thanks Wolfie,,, your family is so lucky to have you... Hope you had a great birthday...

  • dmj101
    dmj101 Member Posts: 527 Member
    keystone said:

    Xeloda

    I try to catch anyone that has questions about Xeloda because my husband did fine the first 10 days or so then got very sick with it. I read that Folic Acid in the diet or as a supplement increased the side effects of it. We cut out breads,cerials,pastas and anything else that was fortified with Folic Acid and he was a different person! I hope you don't have problems but if you do keep this in mind. I have shared with others having trouble and it helped them also. Stephanie

    Yes, they warned me about

    Yes, they warned me about folic acid and especially b vitamins.. I never thought about the bread products.. that would just kill me... I need them them to stay alive.. after gastric bypass and now a colostomy.. there is so little varieties of stuff I can eat.. carbs are a stabilizer for me.. ugh...

     

  • dmj101
    dmj101 Member Posts: 527 Member
    AnnLouise said:

    Xeloda......

    Donna, I am on xeloda for the second time. Last year I was on it along with oxy and avastin for 8 rounds and now by itself. I find it very manageable... I take zofran and lomotil 1/2 hour before the pills morning and night and make sure to put lotion on my hands and feet. Starting my fourth round on Saturday....a little fatigued but able to function and enjoy life. Please keep me posted and any questions, please feel free to ask.  Hope you continue to do well......-~ Ann

    This is my 3rd attempt.. did:

    This is my 3rd attempt.. did:

    5fu 8 weeks

    folfox - 13 rounds

    folfiri - 15 rounds w/Vectibix

    now Xeloda.w/Vectibix

    I am hoping it goes well and I get the results I need.

     

  • dmj101
    dmj101 Member Posts: 527 Member

    Xeloda is converted to 5FU in

    Xeloda is converted to 5FU in the body, so teh side effects are the same as 5FU (diarrhea, mouth sores, nausea, etc..).  I think the side effects are generally milder with Xeloda because you are taking the same dose over a longer time (2 weeks vs. 2 days for 5FU infusion).

     

    Tedd

    Yes, Xeloda is 5fu in pills..

    Yes, Xeloda is 5fu in pills.. I hope you are right about the sideeffects slower coming;

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    I asked Steves onc today if
    I asked Steves onc today if he could switch from the pump to Xeloda. There has been some concern that a clot near his port is preventing the 5fu from emptying the pump within the time frame. Lately, his bottle is not yet empty come disconnection time. There is also concern that the clot is absorbing too much chemo. It seems to me that the oral form of the same medication would solve the problem. Not going to happen. Apparently, (We live in Ontario, Canada) Xeloda is considerably more expensive than the pump. OHIP will not cover it. Would have to ask our private insurance company to pay. Would like take a while to get approval. Steve is only scheduled for three more sessions, so she prefers to hold off for now. Plus she says that the side effects might be worse for him. He tolerates them pump well. It surprises me that the oral med is more expensive than the pump. To me, the pump looks like the more expensive route. Especially when you consider the cost of disconnection etc. The onc agreed. The only other solution (around this clot) is to connect the pump to a vein in his groin, instead of the vena
    cava (port)!!!!!!! Steve was not jumping for joy over that suggestion. The onc advised against it due to his recent bleeding problems. Will continue on as usual. She suspects the chemo is being effective, as is.

    I guess I got slightly off topic. Glad your tolerating the Xeloda well, Donna. I've only heard positive comments regarding this form of the drug.

    Chelsea
  • dmj101
    dmj101 Member Posts: 527 Member
    Chelsea71 said:

    I asked Steves onc today if
    I asked Steves onc today if he could switch from the pump to Xeloda. There has been some concern that a clot near his port is preventing the 5fu from emptying the pump within the time frame. Lately, his bottle is not yet empty come disconnection time. There is also concern that the clot is absorbing too much chemo. It seems to me that the oral form of the same medication would solve the problem. Not going to happen. Apparently, (We live in Ontario, Canada) Xeloda is considerably more expensive than the pump. OHIP will not cover it. Would have to ask our private insurance company to pay. Would like take a while to get approval. Steve is only scheduled for three more sessions, so she prefers to hold off for now. Plus she says that the side effects might be worse for him. He tolerates them pump well. It surprises me that the oral med is more expensive than the pump. To me, the pump looks like the more expensive route. Especially when you consider the cost of disconnection etc. The onc agreed. The only other solution (around this clot) is to connect the pump to a vein in his groin, instead of the vena
    cava (port)!!!!!!! Steve was not jumping for joy over that suggestion. The onc advised against it due to his recent bleeding problems. Will continue on as usual. She suspects the chemo is being effective, as is.

    I guess I got slightly off topic. Glad your tolerating the Xeloda well, Donna. I've only heard positive comments regarding this form of the drug.

    Chelsea

    HI Chelsea,
    Yes I was aware

    HI Chelsea,

    Yes I was aware the Xeloda was more costly, but since this is my 3 try to keep my METS is check the dr listened to me when I cried no pump and no more loss of hair.. though I think she wanted me back on folfox or folfiri and neither made me a happy girl.. I know vanity is not a great logical balancing route regarding cancer treatment plans.. but it is what it is.. and I am of the opinion if I look ill I will feel ill.

    Wow.. I never heard about what they would do for a clot.. so that is good to know.. well I hope all works out..

    Donna

  • steved
    steved Member Posts: 834 Member
    Xeloda

    Took xeloda for about six months last year and found it very tolerable. Was on avastin a lot of the time and found the concoction very tolerable. Some tiredness and mild nausea but worked full time and functioned reasonably. For me it was far easier than oxaliplatin and  very convenient being oral.

    This isn't everyone's experience but I hope it goes well for you and you get the results you are looking for,

    Steve

  • dmj101
    dmj101 Member Posts: 527 Member
    steved said:

    Xeloda

    Took xeloda for about six months last year and found it very tolerable. Was on avastin a lot of the time and found the concoction very tolerable. Some tiredness and mild nausea but worked full time and functioned reasonably. For me it was far easier than oxaliplatin and  very convenient being oral.

    This isn't everyone's experience but I hope it goes well for you and you get the results you are looking for,

    Steve

      Yes, that is good to know..

      Yes, that is good to know..

    and Yes we talked about adding Avastin.. I wonder if that would be with the Vextibix or if was a trade off.

  • Vancouver
    Vancouver Member Posts: 15
    Minimal Side Effects

    My mom is on her fifth round of xeloda (not taking with anything else).  Side effects kicked in after the third round, but they have been minimal--just sores on her hands.  These resolved with interruption (she is now two weeks on, two weeks off instead of two weeks on, one week off).  The issues with her hands have been so minor in comparison with the dramatic results she has been getting (seriously, nothing short of miraculous!).  I hope you have the same amazing results and ability to tolerate xeloda.

    Re: the costs of xeloda, I'm surprised anyone is having trouble getting this covered in Canada.  We live in BC and the drug has been covered for my mom. 

    I remember being disappointed when my mom was deemed too weak for IV chemo treatment, but in hindsight we are so lucky her oncologist insisted on xeloda given how well it has worked for her.

  • maglets
    maglets Member Posts: 2,576 Member
    Vancouver said:

    Minimal Side Effects

    My mom is on her fifth round of xeloda (not taking with anything else).  Side effects kicked in after the third round, but they have been minimal--just sores on her hands.  These resolved with interruption (she is now two weeks on, two weeks off instead of two weeks on, one week off).  The issues with her hands have been so minor in comparison with the dramatic results she has been getting (seriously, nothing short of miraculous!).  I hope you have the same amazing results and ability to tolerate xeloda.

    Re: the costs of xeloda, I'm surprised anyone is having trouble getting this covered in Canada.  We live in BC and the drug has been covered for my mom. 

    I remember being disappointed when my mom was deemed too weak for IV chemo treatment, but in hindsight we are so lucky her oncologist insisted on xeloda given how well it has worked for her.

    Donna

    I have done full course of 5FU......had great difficulties....have done xeloda by itself and then a course of xeloda with oxalyplatin.

    I found the xeloda the easiest to tolerate by far.  My side effects with xeloda were digestive....had gut pain....not just nausea.....lots of nibbling crackers.....I agree with you....sometimes the carbs would be hard to give up ....sometimes bread and crackers just feel like a sopper-upper ....

    Vancouver I am in Ontario too and like Steve and Chelsea I had trouble getting the xeloda.....my onc had to do some mighty fancy footwork to get it covered.....to tell truth i cannot remember what she did.....but it was all under the table .

    Stay well Donna and good luck with the xeloda......

    mags

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    maglets said:

    Donna

    I have done full course of 5FU......had great difficulties....have done xeloda by itself and then a course of xeloda with oxalyplatin.

    I found the xeloda the easiest to tolerate by far.  My side effects with xeloda were digestive....had gut pain....not just nausea.....lots of nibbling crackers.....I agree with you....sometimes the carbs would be hard to give up ....sometimes bread and crackers just feel like a sopper-upper ....

    Vancouver I am in Ontario too and like Steve and Chelsea I had trouble getting the xeloda.....my onc had to do some mighty fancy footwork to get it covered.....to tell truth i cannot remember what she did.....but it was all under the table .

    Stay well Donna and good luck with the xeloda......

    mags

    I was going to send you a pm,
    I was going to send you a pm, Maggie. I remember reading that you had taken Xeloda and wondered if you'd had a hard time with regards to coverage. I got the impression from Steves oncologist that it would be possible to convince the insurance company that the oral medication was required but that it would be a big hastle. She also said that the doctors have been trying to convince the government that Xeloda can be more cost effective and more convenient for the patient. She said that they are beginning to understand and she can see Xeloda becoming much easier to get within the near future. The pump is a bit of a pain. Especially with the problems Steve has been having lately. He will go to the home care office for disconnection and they will say to come back in four hours. Pills would be so much simpler!

    Sorry to hijack your post, Donna
  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    also starting Xeloda

    i'm reading your post with rapt attention as I too will be on Xeloda. I will probably start next week.  The only way i can get the pills is thru mail order, which is fine.

    How' the sun sensitivity?

     

    take care

     

    Karin

  • maglets
    maglets Member Posts: 2,576 Member
    sun

    I burned tomato red within seconds on 5FU.....was not so sensitive with xeloda but one of the courses went through the winter......so that doesn't count....

    mags

  • fighting_ big_c
    fighting_ big_c Member Posts: 64
    maglets said:

    sun

    I burned tomato red within seconds on 5FU.....was not so sensitive with xeloda but one of the courses went through the winter......so that doesn't count....

    mags

    FOLIC ACID

    My mom was taking Folic Acid before until this week that I read that Folic Acid should not be taken with Xeloda?

  • Xeloda Side Effects

    Hi dmj,

    My onc put me on Xeloda back in December as maintenance chemo. 

    When I received my first bottle of the drug, I was also given a goodie bag from the manufacturer Genetech.  The company sponsors a FREE program to assist patients taking the drug that includes a help line you can call 24 hours a day and speak with a registered nurse trsined in Xeloda and its side effects.  You can find out more and register for the FREE program at http://www.xeloda.com/resources/.  

    As far as side effects are concerned, in addition to the resources provided by the Xeloda help line, you can get more information from Chemocare.com.  You can find specific Xeloda information including a list of side effects at http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx

    As far as side effects I've personally experienced, the worst is the Hand and Foot Syndrome.  It produces peeling and sores (not open wound type) on your hands and feet that includes numbness in the fingers and toes and the bottoms of the feet.  While it started during my second two-week "on" cycle, it didn't get bad until my third two-week "on" cycle.  It has gotten bad enough now that my onc has changed me to one-week on and one-week off cycle.  It's very important to get ahead of the Hand & Foot Syndrome.  There are various creams and ointments you can use, but among the most popular and from what I've learned from other patients on various message boards are:

    1. Uddery Smooth Udder Cream - yes it was developed for cows to reduce the irritation from repeated machine milkings.  The "goodie bag" I received from Genetech included a small tube of it.  You might be able to buy it from a local pharmacy although I wound up buying a supply from Drugstore.com

    2.  Zim's Crack Creme is also good. I bought a supply from Drugstore.com

    3. In addition, an onco nurse passed the following along to another patient, although I haven't tried these myself.

       a.  Any lotion with Dimethicone is "great" for cracked skin.

       b.  You can try a homemade concoction of:

          (1) 16 oz. baby lotion

          (2) 8 oz. Vitamin E cream

          (3) 8 oz. Vaseline

       c. Finally, you could try something called Aquaphor (sic) which was also recommended by another patient.  Supposedly it is very healing but messy. 

    Typically, I lotion up my feet with Udderly Smooth before bed, wrap them in Saran Wrap and put on socks.  I also apply Udderly Smooth liberally to my hands four or five times a day.  Some wear white gloves, especially at night over the Udderly Smooth. 

    The only other side effects I've experienced are some abdominal discomfort and some loose bowel movements.  Oh, and of course the ubiquitous low blood counts it seems accompany any chemotherapy. 

    If you want to know more about my experience with Xeloda, drop me a note. 

    Good luck and fair winds and following seas.

    Rick