Xeloda and fatigue

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Xeloda and fatigue

by Redpen on Fri Apr 06, 2007 12:00 AM

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My mother finished two courses of Xeloda. She complains that she is so tired that the most she can do is go from her bed to her chair. Her hands and feet haven't been effected and there aren't any other side effects except this awful fatigue. She also has Parkinson's disease and the Xeloda seems to be effecting her temors as well. She doesn't want to continue until she gets blood work and scans done to see if it's working. No one has told us that she has experienced more mets, just that her bloodwork is edging to the "top normal range" indicating that if we do nothing, something is going to "come back". She had a rod put in her femur in Nov 2006 but the lab results taken from the 10cm lesion were negative for malignancy. She had radiaiton on that area. Her latest bone scan showed three "suspicious" areas-one in her sternum and two in her pelvic bones. An orthopedic oncologist said that the pelvic ones were not cancer spots (he called them osteitis condensans ilii) but couldn't comment on the sternum because of the technoligist's technique. her liver showed mild heterogenous changes but with no lesion. That's why her oncologist put her on Xeloda. This treatment is being called "preventative". Can you expect any signifcant results after just two courses? She's taking 2 500 mg pills twice a day. Her doctor did cut her back to 1 500 mg twice a day just to get her to keep taking it. They said she needs to take it until her "disease" progresses. Has anyone else gotten so fatigued that they want to stop and what did you do about it? Is 150 mg of any benefit in our situation? Has Xeloda caused anyone to die?  We have an appt this Thursday and I want to ask the right questions. Any answers to this rambling would be greatly appreciated.

 

RE: Xeloda and fatigue

by Witchdoctor on Fri Apr 06, 2007 12:00 AM

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I can't answer, is her tumor ER/PR positive?  Sounds like she should be on hormonal therapy or at least wait to see if there is any measurable, biopsiable disease.  You usually treat a diagnosis, not a lab result.  (not always true since sometimes it is high enough to be obvious).

RE: Xeloda and fatigue

by Bigboy on Fri Apr 06, 2007 12:00 AM

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i take xeloda and get fatigued. i'm in to my 14th cycle. i take 1000 mg twice a day. i did take 1500 twice daily but my dr, reduced it.  you need to learn how to compensate for the fatigue i don't use a walker i use a desk chair if i get fatigue i sit down. i use a scooter when i go to stores,my own. when i work outside i use a chair or garden cart with wheels. if you stop you will die. cancer never give up. i will nver give up so cancer is in for the fight of my life. keep the faith.

RE: Xeloda and fatigue

by Moonstonebeach on Fri Apr 06, 2007 12:00 AM

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My husband took Xeloda and it was a horrible drug. He was so fatigued that he could not function. I could barely rouse him for anything. After the first round we had him switched to 5FU. He had a much better course of treatment and he was able to work after the 48 hour treatment. I know that some of the oncologists have switched to Xeloda but I have nothing good to say about it.

Katye

RE: Xeloda and fatigue

by Witchdoctor on Sat Apr 07, 2007 12:00 AM

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I will say that Xeloda is an important advance as compared to getting IV 5FU.  My experience is the side effects are somewhat less than the IV version.  The problems mainly seem to be the length of time of treatment and the dose.  Because it is so easy to give, people are giving it for longer periods and you get cumulative side effects.  Also if you are taking it mainly as a radiation sensitizer the dose can be much lower and really you only need to take it 2 hours prior to treatment and can stop on weekends.  My experience is it is less toxic when given in a similar fashion to IV and More toxic based on dose and length of treatment.  I dont think there are good dose/efficacy studies yet.  My feeling is it will replace IV 5fu and maybe even CDDP(for chemosensitization, I have been impressed with the results in H and neck, lung and bladder Ca.  It seems to do well in the GI tumors as well.  The drug is in some ways targeted since the enzyme that converts it to 5Fu is found in higher concentrations in Cancers.

Of course, as with any chemo agent, there will be people who get worse side effects than others.

RE: Xeloda and fatigue

by Pinkribbon on Sat Apr 07, 2007 12:00 AM

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On 4/6/2007 Redpen wrote:

My mother finished two courses of Xeloda. She complains that she is so tired that the most she can do is go from her bed to her chair. Her hands and feet haven't been effected and there aren't any other side effects except this awful fatigue. She also has Parkinson's disease and the Xeloda seems to be effecting her temors as well. She doesn't want to continue until she gets blood work and scans done to see if it's working. No one has told us that she has experienced more mets, just that her bloodwork is edging to the "top normal range" indicating that if we do nothing, something is going to "come back". She had a rod put in her femur in Nov 2006 but the lab results taken from the 10cm lesion were negative for malignancy. She had radiaiton on that area. Her latest bone scan showed three "suspicious" areas-one in her sternum and two in her pelvic bones. An orthopedic oncologist said that the pelvic ones were not cancer spots (he called them osteitis condensans ilii) but couldn't comment on the sternum because of the technoligist's technique. her liver showed mild heterogenous changes but with no lesion. That's why her oncologist put her on Xeloda. This treatment is being called "preventative". Can you expect any signifcant results after just two courses? She's taking 2 500 mg pills twice a day. Her doctor did cut her back to 1 500 mg twice a day just to get her to keep taking it. They said she needs to take it until her "disease" progresses. Has anyone else gotten so fatigued that they want to stop and what did you do about it? Is 150 mg of any benefit in our situation? Has Xeloda caused anyone to die?  We have an appt this Thursday and I want to ask the right questions. Any answers to this rambling would be greatly appreciated.

 


 

Dear Redpen,

My pyschatrist prescribed Adderall to help me with the fatigue.

It is a little known treatment that oncologost over look.  They are not trying to care for an 8 year old special needs child. I certainly understand how your Mom feels. There have been times, even on the Adderall, that I want to give up and stop taking it. I have severe hand and foot syndrome. It hurts my hands and feet alot. I have medicine now prescribed to numb the nerves on the tips of the fingers and soles of my feet. It is a lotion. Do not let her give up. Research and find a Dr. who will listen, and tell him or her EXACTLY what you want, do not wait for them to offer. They just may not know about or think about different treatment options.

I take 1500mg 2X a day.

If you want more info or just to talk about side effects feel free to contact me privately.

Bette, Chicago Area

RE: Xeloda and fatigue

by Yancy on Sat Apr 07, 2007 12:00 AM

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I have been on xeloda now for a couple of weeks and also have experienced some of the fatigue... I mostly seem to have a day or two that all I can do is sleep.  May I ask why the rod had to be put into the femur??? I have mets breast cancer to the bones... My bones include the entire pelvic area, sternum, ribs, femurs, scapulas, entire spine and illalic bones, and the skull.... I have been experiencing lots of pain in my right leg.  I do have a pain pump inplanted in my right hip that runs a cath to my spine.  It constantly feeds pain meds to my nerves, so that I can walk and lead a pretty normal life.  I am also doing a "trial" at the same time for a drug called "avastin".  It has been approved for colon cancer, but not for breast cancer.... It is a blinded test and is supposed to be real close to fda approval.... I hope I am actually getting the drug.... I am only 39 and am terrified what my scans will show when I get them at the first of May.  So, I also have been taking some "B" complex to help with the fatigue and mostly I just push myself.  I am also anemic, since the cancer is in my bones..... I am on aranesip and zometa, the ararensip is suppose to help with the anemia, and the zometa with the strengthening of the bones..... Maybe your mom could do some of those things.

RE: Xeloda and fatigue

by Redpen on Sun Apr 08, 2007 12:00 AM

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She's Her2 negative if that's what you mean. Tow different oncologoists said that if your tumor marker numbers double by more than 50% in 3 months you'd have to think that something is happening. That's happened the last two blood tests in a 6 month period.  We're trying to be proactive, but don't want to make her feel awful for no measurable reason. Are you saying that you would wait for a definite tumor somewhere?

RE: Xeloda and fatigue

by Redpen on Mon Apr 09, 2007 12:00 AM

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Is 5fu the iv equivalent to Xeloda? I thought that's what it becomes once you get it into your system. We didn't do well on iv therapies.My mother has Parkinson's too. All of this chemo is interfereing with her Parkinson's meds so the most she does (she's 76) is shake from her Parkinson's or sleep from the xeloda. She's on her thrid hormone therapy drug (arimidex, aromasin and now femara). Her blood work is in the normal range but the tumor markers keep going up. They told me 0-38 is considered "normal'" She's at 32. Her doctor said if you do nothing the cancer will come back. I guess I want to know how out of the "normal range" you have to be before mets occurs to make her keep taking something that she says is killing her. Aredia was also a disaster so she refuses more of those treeatments. She had the whole list of "rare" side effects from that.

RE: Xeloda and fatigue

by Redpen on Mon Apr 09, 2007 12:00 AM

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On 4/7/2007 Yancy wrote:

I have been on xeloda now for a couple of weeks and also have experienced some of the fatigue... I mostly seem to have a day or two that all I can do is sleep.  May I ask why the rod had to be put into the femur??? I have mets breast cancer to the bones... My bones include the entire pelvic area, sternum, ribs, femurs, scapulas, entire spine and illalic bones, and the skull.... I have been experiencing lots of pain in my right leg.  I do have a pain pump inplanted in my right hip that runs a cath to my spine.  It constantly feeds pain meds to my nerves, so that I can walk and lead a pretty normal life.  I am also doing a "trial" at the same time for a drug called "avastin".  It has been approved for colon cancer, but not for breast cancer.... It is a blinded test and is supposed to be real close to fda approval.... I hope I am actually getting the drug.... I am only 39 and am terrified what my scans will show when I get them at the first of May.  So, I also have been taking some "B" complex to help with the fatigue and mostly I just push myself.  I am also anemic, since the cancer is in my bones..... I am on aranesip and zometa, the ararensip is suppose to help with the anemia, and the zometa with the strengthening of the bones..... Maybe your mom could do some of those things.

 

The rod was put in her femur because the found a 10 cm lesion by accident when she was getting her scans. They said that it should be put in in case her leg was weakened by the lesion and could break. They said it was better to get it done before it could break. The lab results, however, showed no evidence of malignancy. The oncologist wanted it to be radiated anyway.
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