xeloda vs pump & FATIGUE...NO ENERGY

elvisfans_tcb
elvisfans_tcb Member Posts: 8
edited March 2014 in Colorectal Cancer #1
joey has sigmoid tumor stage 4, has spread to liver and lungs. he is taking Xeloda and iv chemo (every three weeks). today on his tenth day of Xeloda he has incredible fatique, no energy. any suggestions on fighting fatique and has anyone gone to pump instead of oral Xeloda and did it make much difference...MARY (wife)

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    From one Mary to another
    sorry Joey is having such a hard time with his chemo. I have never done Xeloda, but have done IV 5FU (what Xeloda converts to inside the body)in combination with other drugs a number of times. I certainly did have fatigue, as you will find a lot of us have had during chemo. You never know if the fatigue is directly related to the chemo, the cancer, the healing, or all combined. Just be sure he takes a nap when he needs it! Trying to work through the fatigue makes it worse, and when else do you have an excuse to lay on the couch and watch tv whenever you feel like it?! It sucks, I know. I am sure his onc is tracking his blood work to make sure red cells are doing ok. I was stage IIIB colon in 2004, recurrence in my abdomen 2006, currently looking at something on my liver that might be a problem. If I remember right, you guys are fairly new to the fight and I am SO sorry you are having to deal with this. Be strong and I am sure you will get much more help here from others.
    mary
  • clgregory
    clgregory Member Posts: 5
    xeloda vs pump & FATIGUE...NO ENERGY
    I was diagonsed with stage 4 colon cancer too. I went from the pump to xeloda during my second round of treatment and the first time I took the xeloda I thought that I wanted to go back to the pump- I did not like it at all! But, by the second treatment my body started adjusting and it was no problem. Hang in there if possible! Take those naps often (I do!) I am currently on my 4th round of chemo- after my second liver surgery and I am finding things this time that hadn't happened before even with the same exact treatment. I think that it depends on how your body/mind take it all in. Again, hang in there rest often. My thoughts and prayers are with you. Cindy- Survivor
  • elvisfans_tcb
    elvisfans_tcb Member Posts: 8
    msccolon said:

    From one Mary to another
    sorry Joey is having such a hard time with his chemo. I have never done Xeloda, but have done IV 5FU (what Xeloda converts to inside the body)in combination with other drugs a number of times. I certainly did have fatigue, as you will find a lot of us have had during chemo. You never know if the fatigue is directly related to the chemo, the cancer, the healing, or all combined. Just be sure he takes a nap when he needs it! Trying to work through the fatigue makes it worse, and when else do you have an excuse to lay on the couch and watch tv whenever you feel like it?! It sucks, I know. I am sure his onc is tracking his blood work to make sure red cells are doing ok. I was stage IIIB colon in 2004, recurrence in my abdomen 2006, currently looking at something on my liver that might be a problem. If I remember right, you guys are fairly new to the fight and I am SO sorry you are having to deal with this. Be strong and I am sure you will get much more help here from others.
    mary

    thanks
    you are very nice to take the time to respond. this is great info that the doctors can't offer or... for monetary reasons don't want to if you get my drift.

    Mary and Joe
  • KathiM
    KathiM Member Posts: 8,028 Member
    5FU (pump) and carboplatin....
    but that was almost 4 years ago....

    Day 10, from what I remember, is the low point for white cell counts, etc...have they checked his?

    One of my patient partners started with Xeloda, but found that the 5FU pump was more tolerable for her...she had a delicate constitution...

    Hugs, Kathi
  • lisa42
    lisa42 Member Posts: 3,625 Member
    prefer Xeloda
    I've done the 5FU pump and am now on Xeloda, and I prefer the Xeloda. I sooo hated having that pump hooked up to me & the tape that held it in place was itchy and unbearable for me.
    I really don't think there's a difference in being tired with one vs. the other, for me anyhow. Actually, I was a lot more tired when I had the pump, but it was in combo with taking Folfox as well.
    I know the digestive issues can be worse with Xeloda but, for me anyhow, I've not noticed it being any worse at all. Everyone's different. I wouldn't change just based on getting tired, because you get tired from both.
    Best wishes-
    Lisa
  • claud1951
    claud1951 Member Posts: 424 Member
    I preferred the Pump
    Mary

    I was on the Xeloda for 4 rounds (along with Oxilplatin (sp). Originally, the Xeloda was to strong of a dose and about the 3rd round they lower the dose. It ended up I had to stop that treatment and go on other Chemo, Camptasar and 5 FU pump.

    The Xeloda had to many side effects for me. The pump, I could handle much better. Yes..it's a pain to have to wear (I only wore it for 48 hours) but I didn' have the side effects from the 5FU.
    Fatigue is the number one side effect from any chemo. He needs to rest when he feels tired. It's hard to do, at first, but resting is healing. He'll get used to it. He might even realiz he likes to rest...alot! >>grin>>

    You have to ask your Oncologist this but I took Ginseng. There was/is a study going on with American Ginseng fighting chemo related fatigue. I took Korean Ginseng. It might have been all in my head but I think I felt better. I still take it. But, please, ask your Onc before taking.

    Of course, we all react differently (as I'm sure you have heard).

    Keep coming back and giving us an update.

    Claudia
    Stage 3, ascending colon cancer.
  • taraHK
    taraHK Member Posts: 1,952 Member
    No difference for me
    Hi Mary,
    I have done both and haven't noticed any big differences in fatigue. I am only on my 4th round of xeloda. As others have said, fatigue is a side effect of most/all chemos. Although there are individual differences. I have a nap every day. On the other hand, if he can manage a very gentle walk or even getting outside for a little time each day, that can sometimes boost energy levels a little. Good luck to you both.
    Tara
  • Patsymm
    Patsymm Member Posts: 6
    claud1951 said:

    I preferred the Pump
    Mary

    I was on the Xeloda for 4 rounds (along with Oxilplatin (sp). Originally, the Xeloda was to strong of a dose and about the 3rd round they lower the dose. It ended up I had to stop that treatment and go on other Chemo, Camptasar and 5 FU pump.

    The Xeloda had to many side effects for me. The pump, I could handle much better. Yes..it's a pain to have to wear (I only wore it for 48 hours) but I didn' have the side effects from the 5FU.
    Fatigue is the number one side effect from any chemo. He needs to rest when he feels tired. It's hard to do, at first, but resting is healing. He'll get used to it. He might even realiz he likes to rest...alot! >>grin>>

    You have to ask your Oncologist this but I took Ginseng. There was/is a study going on with American Ginseng fighting chemo related fatigue. I took Korean Ginseng. It might have been all in my head but I think I felt better. I still take it. But, please, ask your Onc before taking.

    Of course, we all react differently (as I'm sure you have heard).

    Keep coming back and giving us an update.

    Claudia
    Stage 3, ascending colon cancer.

    Will begin 5FU & oxaliplatin Tuesday
    I have been looking for some description of what it feels like to begin the IV with oxaliplatin. I've been told it will take 1 to 2 hours for that and then I'll be hooked to pump with 5FU, and wear the pump for 48 hours. I could wait till Tuesday when I go in but am getting anxious about it.

    I think I'll be glad I found this web site.

    Patsy
    Stage 2 ascending colon cancer
  • menright
    menright Member Posts: 256 Member
    Patsymm said:

    Will begin 5FU & oxaliplatin Tuesday
    I have been looking for some description of what it feels like to begin the IV with oxaliplatin. I've been told it will take 1 to 2 hours for that and then I'll be hooked to pump with 5FU, and wear the pump for 48 hours. I could wait till Tuesday when I go in but am getting anxious about it.

    I think I'll be glad I found this web site.

    Patsy
    Stage 2 ascending colon cancer

    Oxaliplatin
    Dear Patsy:

    I had the Oxaliplatin for the first time last week. I will be on this every three weeks combined with daily Xeloda pills and weekly Erbitux (IV).

    My one comment is that the first time in will take longer. I was told 2-hours and ended up being hooked up for 6 hours. They start with saline, add a anti nausea, then a anti alergy and then and only then begin the Oxaliplatin. It was not painful nor uncomfortable. It was just a long time. Bring some good reading material or better yet a laptop. I will plan accordingly for the next time.

    They will forwarn you about the cold sensitivity side effect. It proved very true. I wear hats and gloves all the time now and cannot drink anything below room temperature.

    Good luck.

    Mike
  • Patsymm
    Patsymm Member Posts: 6
    menright said:

    Oxaliplatin
    Dear Patsy:

    I had the Oxaliplatin for the first time last week. I will be on this every three weeks combined with daily Xeloda pills and weekly Erbitux (IV).

    My one comment is that the first time in will take longer. I was told 2-hours and ended up being hooked up for 6 hours. They start with saline, add a anti nausea, then a anti alergy and then and only then begin the Oxaliplatin. It was not painful nor uncomfortable. It was just a long time. Bring some good reading material or better yet a laptop. I will plan accordingly for the next time.

    They will forwarn you about the cold sensitivity side effect. It proved very true. I wear hats and gloves all the time now and cannot drink anything below room temperature.

    Good luck.

    Mike

    Delayed start
    Hi Mike,
    Nice to get your comments. I didn't begin this morning after all. I have a back full of patches testing for allergies. Believe I'm allergic to all kinds of tape that they have used and will use to keep tubes, etc, in place. So. the docs agreed would be good idea to begin on Friday. Patches come off on Wed. will have chemo early Friday, and back looked at again later on Friday. Will be glad to get it all started, though, sooner begun, sooner done. But 6 months sure sounds like a long way off.

    Have you been keeping a journal? I think I'll try to remember all that's happened so far and document it in journal. And yes, they have forewarned me about the cold sensitivity.

    Sure hope you can enjoy Thanksgiving.
    Warm wishes,
    Patsy
  • msccolon
    msccolon Member Posts: 1,917 Member
    Patsymm said:

    Delayed start
    Hi Mike,
    Nice to get your comments. I didn't begin this morning after all. I have a back full of patches testing for allergies. Believe I'm allergic to all kinds of tape that they have used and will use to keep tubes, etc, in place. So. the docs agreed would be good idea to begin on Friday. Patches come off on Wed. will have chemo early Friday, and back looked at again later on Friday. Will be glad to get it all started, though, sooner begun, sooner done. But 6 months sure sounds like a long way off.

    Have you been keeping a journal? I think I'll try to remember all that's happened so far and document it in journal. And yes, they have forewarned me about the cold sensitivity.

    Sure hope you can enjoy Thanksgiving.
    Warm wishes,
    Patsy

    patch sensitivity
    I couldn't use the standard plastic covers they use when you go home with a pump. They have to use paper tape cause my skin would swell up and itch like the devil! The only down side was i couldn't shower with it, so i had to do sponge baths until the pump was disconnected. Definitely better than the alternative!
    mary
  • Patsymm
    Patsymm Member Posts: 6
    msccolon said:

    patch sensitivity
    I couldn't use the standard plastic covers they use when you go home with a pump. They have to use paper tape cause my skin would swell up and itch like the devil! The only down side was i couldn't shower with it, so i had to do sponge baths until the pump was disconnected. Definitely better than the alternative!
    mary

    I have Portacath
    I'm hoping they'll find which tapes I can handle as I imagine they must tape a tube or something to me at the Portacath running to the pump. I wear the pump 48 hrs. One dau-in-law is a nurse and she'll flush and disconnect me since it'll be on Sunday. Am so lucky to have oncology nurse 2 doors down that has been so helpful also. Have a grand daughter that is nurse too so if have to can call her in.

    Mary, I think I am dealing with this so God can make a better person of me. So I'm optimistic that He's not done with me yet. This will make me realize that I can't be such a controller and give me patience with others that may have problems I don't know about.
    I hope you have a super Thanksgiving and God bless you. Thanks for being here.
    New Friend,
    Patsy
  • Patsymm
    Patsymm Member Posts: 6
    msccolon said:

    patch sensitivity
    I couldn't use the standard plastic covers they use when you go home with a pump. They have to use paper tape cause my skin would swell up and itch like the devil! The only down side was i couldn't shower with it, so i had to do sponge baths until the pump was disconnected. Definitely better than the alternative!
    mary

    I have Portacath
    I'm hoping they'll find which tapes I can handle as I imagine they must tape a tube or something to me at the Portacath running to the pump. I wear the pump 48 hrs. One dau-in-law is a nurse and she'll flush and disconnect me since it'll be on Sunday. Am so lucky to have oncology nurse 2 doors down that has been so helpful also. Have a grand daughter that is nurse too so if have to can call her in.

    Mary, I think I am dealing with this so God can make a better person of me. So I'm optimistic that He's not done with me yet. This will make me realize that I can't be such a controller and give me patience with others that may have problems I don't know about.
    I hope you have a super Thanksgiving and God bless you. Thanks for being here.
    New Friend,
    Patsy
  • Patsymm
    Patsymm Member Posts: 6
    msccolon said:

    patch sensitivity
    I couldn't use the standard plastic covers they use when you go home with a pump. They have to use paper tape cause my skin would swell up and itch like the devil! The only down side was i couldn't shower with it, so i had to do sponge baths until the pump was disconnected. Definitely better than the alternative!
    mary

    I have Portacath
    I'm hoping they'll find which tapes I can handle as I imagine they must tape a tube or something to me at the Portacath running to the pump. I wear the pump 48 hrs. One dau-in-law is a nurse and she'll flush and disconnect me since it'll be on Sunday. Am so lucky to have oncology nurse 2 doors down that has been so helpful also. Have a grand daughter that is nurse too so if have to can call her in.

    Mary, I think I am dealing with this so God can make a better person of me. So I'm optimistic that He's not done with me yet. This will make me realize that I can't be such a controller and give me patience with others that may have problems I don't know about.
    I hope you have a super Thanksgiving and God bless you. Thanks for being here.
    New Friend,
    Patsy
  • changing2
    changing2 Member Posts: 118
    Xeloda dose
    Hi, sorry I'm late responding....I'm forever forgeting my password and too lazy to ask again:( I've never been on Xeloda but will start next Monday with Xeloda and OXY. MD says I'll receive 1/2 the dose of Xeloda at first to avoid getting ill. States it's 3 pills in AM and PM and that will equal 1500mg's. Will take Xeloda for 7 days every other week and Oxy every 2 weeks. Do you know how much you are taking? How often are you taking it? Praying for us both....I hate fatigue...but as Mary mentioned...I hate the other option too :)