Xeliri infusion one

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BRHMichigan
BRHMichigan Member Posts: 368
edited April 2018 in Colorectal Cancer #1

I survived my first infusion ever with no immediate adverse reaction. They gave me steroids, anti-nausea, and anti-diahrreal meds too. I took a wee nap, and feel my appetite waning tonight. But other than that, not sure what to expect next. 

I also spent infusion time reading half of a new book called Everything Happens For a Reason by Kate Bowler. Just published this year. She is a stage 4 CRC survivor and professor at Duke Divinity school. If you are at all struggling with your faith it's compelling. Even if you're not, it's a great read. 

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  • BRHMichigan
    BRHMichigan Member Posts: 368
    #2
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    Irinotecan hell

    Well I woke up with terrible diahrrea. Guess the meds wore off around the 20 hour mark. The cramping is so severe it made me nauseous. This is by no means great, but tolerable for now. Just hope it passes quickly. I really don't want to need Imodium on top of everything else I'm taking. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #3
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    BRHMichigan said:

    Irinotecan hell

    Well I woke up with terrible diahrrea. Guess the meds wore off around the 20 hour mark. The cramping is so severe it made me nauseous. This is by no means great, but tolerable for now. Just hope it passes quickly. I really don't want to need Imodium on top of everything else I'm taking. 

    Beth

    you should take the Imodium you wont need for too long hopefully but take it. Irinotecan is rough on the digestive system. The nurse said she calls it I Ran to the Can. I hope you feel better soon!

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #4
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    Ruthmomto4 said:

    Beth

    you should take the Imodium you wont need for too long hopefully but take it. Irinotecan is rough on the digestive system. The nurse said she calls it I Ran to the Can. I hope you feel better soon!

    Thanks, Ruth

    It really has been a bad day. If I need to I will. I'm going to try some things with my diet too, but my appetite is lousy today. Hopeful it comes back. I need to eat to take both the Xeloda and my Metformin. Gotta keep my sugar under control if I want to manage this disease. :(

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #5
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    It’s not diet

    thats what it does massive diarrhea, make sure you try and drink as much as you can. My husband is type 2 but he uses insulin (metformin gave him diarrhea) the steroids made his blood sugar go ridiculously high so dont panic too much, it’s nothing you are doing. the steroids usually caused him issues for 4 days, then he would level out. Thinking of you Beth!! 

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #6
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    Ruthmomto4 said:

    It’s not diet

    thats what it does massive diarrhea, make sure you try and drink as much as you can. My husband is type 2 but he uses insulin (metformin gave him diarrhea) the steroids made his blood sugar go ridiculously high so dont panic too much, it’s nothing you are doing. the steroids usually caused him issues for 4 days, then he would level out. Thinking of you Beth!! 

    Thank you!

    I did not know steroids would affect my blood sugar. Thank you for letting me know. I really appreciate the advice. It seems a lot of people do the Oxi, so I need to read more about Irinetocan. It's all so new to me. I hate losing my appetite. I just don't feel alive. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
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    Sorry

    So sorry that you aren't feeling well.  I've taken the immodium and it does help.  Just use it when needed. Hope you feel better soon.

    Kim

  • Watersprite3
    Watersprite3 Member Posts: 31
    #8
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    I found that I had to dismiss

    I found that I had to dismiss my reservations about taking medicine for the diarrhea I got.  I used Imodium and my doctor prescribed Lomotil.  It would hit me about 5 days after infusion and it was not something I wanted to "tough" my way through.  

    The one drug you are getting is known for causing the diarrhea.  Keep in touch with your doctor because if you let it go too long you will get dehydrated.  There are several medicines available if one doesn't work.  Hope you feel better.

    Eileen

     

     

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #9
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    Watersprite3 said:

    I found that I had to dismiss

    I found that I had to dismiss my reservations about taking medicine for the diarrhea I got.  I used Imodium and my doctor prescribed Lomotil.  It would hit me about 5 days after infusion and it was not something I wanted to "tough" my way through.  

    The one drug you are getting is known for causing the diarrhea.  Keep in touch with your doctor because if you let it go too long you will get dehydrated.  There are several medicines available if one doesn't work.  Hope you feel better.

    Eileen

     

     

    5 days?

    The nurse told me to expect it 4x a day! I had it yesterday but nothing second day yet. The cramps were severe. I was hoping cheese or some other dietary binders might help, but all your advice leads me to think it's time to grab some Imodium. I'm nervously await what the next few days will bring. I need to attend a baby shower at my work on Thursday. I hate my new normal. Somebody needs to shoot that phrase dead. Lol. 

    But I am here. And a little nausea and diahrrea are nothing like being laid out flat from radiation last summer. :)  Looking for a rainbow here. Thanks for your support, everyone. Means the world to me. 

  • Phil64
    Phil64 Member Posts: 838 Member
    #10
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    Beth, 

    Beth, 

    1/2 of the cancer battle is learning how to ‘manage’ the side effects from treatment. What and when to take Imodium vs. Colace vs. anti-nausea meds. 

    You will learn and adjust quickly. 

    And I look forward to your book review.

  • Cindy225
    Cindy225 Member Posts: 172 Member
    #11
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    Looking for a Rainbow...

    Sending positive energy your way Beth...  Diahrrea is so debilitating.  Ditto about staying hydrated.  In addition to cheese I've found bananas and pretzels help.

    BTW Thanks for recommending the book.  I downloaded it to my kindle.  Great reviews. 

    Cindy

     

  • Pamcakes
    Pamcakes Member Posts: 112 Member
    #12
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    Hoping you are feeling better

    Hoping you are feeling better soon. You are a very strong woman and I have no doubt you will be able to find what works for you to help control the side effects. Thank you for the book recommendation I will be reading this shortly! 

  • airborne72
    airborne72 Member Posts: 296 Member
    #13
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    Beth:

    Beth:

    I don't have any suggested remedies for diahrrea induced by chemo.  I never encountered that situation.  But I do have a few words of encouragement because I have been "down" on occasion and when others gave me words of encouragement my spirits rose immediately.

    So here - a few words of encourgement. 

    1) Never forget your goal = survival.

    2) The pain and discomfort you endure today will be just a memory tomorrow.  Focus on the moment and remember #1 above.

    You have so many thinking and praying for you during this challenge.  Add my name to that list.

    Jim

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #14
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    airborne72 said:

    Beth:

    Beth:

    I don't have any suggested remedies for diahrrea induced by chemo.  I never encountered that situation.  But I do have a few words of encouragement because I have been "down" on occasion and when others gave me words of encouragement my spirits rose immediately.

    So here - a few words of encourgement. 

    1) Never forget your goal = survival.

    2) The pain and discomfort you endure today will be just a memory tomorrow.  Focus on the moment and remember #1 above.

    You have so many thinking and praying for you during this challenge.  Add my name to that list.

    Jim

    So very touched

    ...by all of the support. Managed to eat at Olga's and go to a movie with my sister today. Only had to leave movie once for a bathroom trip. More 'activity' in the evening, so I had my son pick up Imodium.

    You are all right, I need to keep my eyes on the prize... enjoying my granddaughter, living to see two of my sons graduate college, long enough to see my other son beat his substance abuse problem, to be here for my daughter, and my husband. To renovate my kitchen on the cheap. To pick up some second hand lawn furniture and enjoy the sunsets. Every single day is a gift. 

    I am beginning to accept this insane roller-coaster that is the cancer life. It's just hard to hit another low after nearly three months of feeling great. Thanks again, everyone. I am so grateful for all of you here. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #15
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    BRHMichigan said:

    So very touched

    ...by all of the support. Managed to eat at Olga's and go to a movie with my sister today. Only had to leave movie once for a bathroom trip. More 'activity' in the evening, so I had my son pick up Imodium.

    You are all right, I need to keep my eyes on the prize... enjoying my granddaughter, living to see two of my sons graduate college, long enough to see my other son beat his substance abuse problem, to be here for my daughter, and my husband. To renovate my kitchen on the cheap. To pick up some second hand lawn furniture and enjoy the sunsets. Every single day is a gift. 

    I am beginning to accept this insane roller-coaster that is the cancer life. It's just hard to hit another low after nearly three months of feeling great. Thanks again, everyone. I am so grateful for all of you here. 

    They didn’t give you any?

    that was one of the million different prescriptions they gave my husband on chemo day one.  they him so much compazine  he never took it for nausea he preferred the zofran. I hoarded it all we covered if the stomach bug ever comes here. 

     I am happy you got out today and enjoyed some time with your sister! You can do this!!!!

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #16
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    Ruthmomto4 said:

    They didn’t give you any?

    that was one of the million different prescriptions they gave my husband on chemo day one.  they him so much compazine  he never took it for nausea he preferred the zofran. I hoarded it all we covered if the stomach bug ever comes here. 

     I am happy you got out today and enjoyed some time with your sister! You can do this!!!!

    Pills pills pills

    Ruth, I struggle to take my Metformin, Xeloda, and now B vitamins to try to counter the neuropathy that's already setting in my feet. I'm also supposed to be taking a ton of supplements per my integrative Oncologist. Hopeful I can take them again on my off weeks. I just can't imagine adding anything else. The infusion nurse told me to call my regular Onc if it gets too bad. The Imodium helped today. But I'll definitely think about adding more Rx if needed. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #17
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    I'm sorry you're going

    I'm sorry you're going through this. Side effects can be so tough. Here's a suggestion in case it helps. Take something like Metamucil. It's supposed to be for constipation but it helps with diarrhea. When your system gets so into flushing everything through it can be hard for it to stop the cycle. The Metamucil turns into a kind of jelly and stops that from happening and gives the system something to work on. I learned this when we had a young horse that had terrible diarrhea that just would not stop. A vet told me to try it and it stopped it almost immediately and she didn't get it again. 

    Maybe ask your doctor or nurse what they think of that idea.

    Jan

  • Mikenh
    Mikenh Member Posts: 777
    #18
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    My suggestions is potatoes

    My suggestions is potatoes and sweet potatoes. That always bulks things up for me. Sometimes too much. My guess is that the potatoes absorb a ton of water.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #19
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    Mikenh said:

    My suggestions is potatoes

    My suggestions is potatoes and sweet potatoes. That always bulks things up for me. Sometimes too much. My guess is that the potatoes absorb a ton of water.

    Great suggestions!

    I've pretty much thrown my low carb diet out the window this week. I think the Metamucil idea makes sense, and I love that a vet recommended it. Amazing how similar we are to our animal friends. Mike, I also think adding potatoes sounds perfect. By day 4 it slowed quite a bit, revealing just how slow my system is. I have only taken 2 Imodiums too. I read it's recommended around the clock, so I think my response is pretty good so far. Hope those tumors are shrinking!  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #20
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    Awww

    You've been through so much in such a short time - hope you feel better soon and I'm glad it is slowing down.

    Kim

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