Mom's having trouble with this 'fight'

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fighting for mom
fighting for mom Member Posts: 96
edited March 2014 in Colorectal Cancer #1
Well, Mom has finished round 5. She had no good days between round 4 and 5- she ended up having everything reduced by 20% except the nausea meds for round 5. She still is having trouble with severe diarrhea- even with taking meds. Her onc said that all her symptoms are 'classic 5FU'- which from reading posts here I thought they sounded more like the oxi. But- what do I know? She is talking about getting round 6 and then going to every 3 week treatments. She is just having such a difficult time with it all. She isn't able to even work from home at this point. Her extreme exhaustion is just forever hanging on.

She is also thinking she may just do short term disability to get through the last 1/2.

This has been so hard on her and my dad. He just doesn't know what to do for her.

I still think she would benefit from an anti-depressant. Convincing her of it is another thing.

I get so much hope and encouragement from the posts.

Comments

  • usakat
    usakat Member Posts: 610 Member
    #2
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    Cancer is such a tough situation
    Hello fighting mom's kid ~

    Sorry your mom is struggling. Unfortunately some of those struggles come with the cancer and chemo package. In my not so humble opinion, your mom should explore going on short term disability if it's available and she should not feel one iota of negativity about it. If she needs the break from work to restore her health, she most certainly should take a break. You might also encourage her to talk to her oncologist and/or chemo nurse about her side effects - they might be able to help her.

    Many prayers to your mom and your family...
    Katie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #3
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    So sorry
    I'll be praying things will improve for her. Sounds like she's having such a rough time right now.

    *hugs*
    Gail
  • Unknown
    Unknown
    #4
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    This comment has been removed by the Moderator
  • polarprincess
    polarprincess Member Posts: 202
    #5
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    hi
    it is so interesting how we are all so different. I have never had diarrhea...just terrible constipation.... If the doc is sure it is the 5Fu causing her issues have they discussed trying Xeloda pills instead? Everyone seems to have less side effects on that. I would be willing to be the extreme exhaustion is more from the OXy than the 5 Fu. I know for me, when i got OXY i also had no good days between cyles. I was crashed on the couch for 5 days completely non functional. My husband had to do everything for me. When i was taken off the OXy and did 5FU only, I had 2-3 days of moderate fatique and then felt almost normal through the rest of the cycle- complete piece of cake. Hopefully they can work something out... i feel for her...how is her blood work? if her hemoglobin is really low that could be contributing to the fatique, and obviously the doctor would know that..but sometimes with docs you just never know....
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #6
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    polarprincess said:

    hi
    it is so interesting how we are all so different. I have never had diarrhea...just terrible constipation.... If the doc is sure it is the 5Fu causing her issues have they discussed trying Xeloda pills instead? Everyone seems to have less side effects on that. I would be willing to be the extreme exhaustion is more from the OXy than the 5 Fu. I know for me, when i got OXY i also had no good days between cyles. I was crashed on the couch for 5 days completely non functional. My husband had to do everything for me. When i was taken off the OXy and did 5FU only, I had 2-3 days of moderate fatique and then felt almost normal through the rest of the cycle- complete piece of cake. Hopefully they can work something out... i feel for her...how is her blood work? if her hemoglobin is really low that could be contributing to the fatique, and obviously the doctor would know that..but sometimes with docs you just never know....

    im with ya
    hey just wanted to say im sorry she is having a rough time.im afraid thats the way it might be for me i seem to have had it rough just after my first one.i go for #2 next week i am going to talk to my onc about different meds that are mentioned on these posts.im like your mom i dont like taking a lot of pills but i guess i have got to face reality,if that is what is going to help me fight this then so be it.i might even try for an antidepressiant.as for the short term disability tell her to go for it too.i got short term and now i am going into long term,it has devistated me not to go back to work but right now i have to think about kicking this thing and getting better.if it is avaialable for her tell her to go for it and to take care of herself.Godbless.....johnnybegood
  • msccolon
    msccolon Member Posts: 1,917 Member
    #7
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    that crappy diarrhea
    Yes, it's from the 5FU and I definitely had it bad! Immodium didn't touch it, so I added Lomotil. That didn't touch it either. I had to go in for fluids I got so dehydrated. After that, I started getting a once a month shot of Sandostatin. Ask her doctors about it. I called it magic juice cause it TOTALLY helped with the diarrhea! It didn't get rid of it, mind you, but it made it so much more manageable! I never had to go in for extra fluids after that! The Lomotil and sometimes hyocyamine worked great! If you don't have hyocyamine (375 mg) you might want to ask about it also. It stops the spasms in the colon and stops diarrhea in it's tracks! It will really make your mother loopy, though. Hope she is feeling better soon! If she is dehydrated from the diarrhea, that will make her extra tired as well. Have her get some IV fluids and see if that doesn't help as well. You are doing an awesome job of advocating and caring for your mother; remember to take care of yourself as well!
    mary
  • fighting for mom
    fighting for mom Member Posts: 96
    #8
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    msccolon said:

    that crappy diarrhea
    Yes, it's from the 5FU and I definitely had it bad! Immodium didn't touch it, so I added Lomotil. That didn't touch it either. I had to go in for fluids I got so dehydrated. After that, I started getting a once a month shot of Sandostatin. Ask her doctors about it. I called it magic juice cause it TOTALLY helped with the diarrhea! It didn't get rid of it, mind you, but it made it so much more manageable! I never had to go in for extra fluids after that! The Lomotil and sometimes hyocyamine worked great! If you don't have hyocyamine (375 mg) you might want to ask about it also. It stops the spasms in the colon and stops diarrhea in it's tracks! It will really make your mother loopy, though. Hope she is feeling better soon! If she is dehydrated from the diarrhea, that will make her extra tired as well. Have her get some IV fluids and see if that doesn't help as well. You are doing an awesome job of advocating and caring for your mother; remember to take care of yourself as well!
    mary

    Thanks
    Thanks for all the encouraging words and med recommendations! Just got off the phone with my mom- and she is worse. She got the pump off on Thursday of last week- and is still having diarrhea (taking lomotil) which is apparently not working! She is now not keeping any food down and having trouble walking as well. I asked her if she was dehydrated- how could she not be? Of course- she said she wasn't. She is a little stubborn. I asked her if she called her onc. and tell about how bad she is---she'll do it in the am. She is an RN- she should know better. They say people in the healthcare field make the worst patients!

    She is going to do the short term disability so that is good.

    I wish she would have called the onc sooner. Bless her heart she is trying so hard to be tough and 'deal' with things, but I really don't think things should be so bad especially with all the meds reduced last time.

    I will be headed up there this weekend- I may have to call the onc for her tomorrow!

    Thanks for the encouragement!
  • Shayenne
    Shayenne Member Posts: 2,342
    #9
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    fighting for mom said:

    Thanks
    Thanks for all the encouraging words and med recommendations! Just got off the phone with my mom- and she is worse. She got the pump off on Thursday of last week- and is still having diarrhea (taking lomotil) which is apparently not working! She is now not keeping any food down and having trouble walking as well. I asked her if she was dehydrated- how could she not be? Of course- she said she wasn't. She is a little stubborn. I asked her if she called her onc. and tell about how bad she is---she'll do it in the am. She is an RN- she should know better. They say people in the healthcare field make the worst patients!

    She is going to do the short term disability so that is good.

    I wish she would have called the onc sooner. Bless her heart she is trying so hard to be tough and 'deal' with things, but I really don't think things should be so bad especially with all the meds reduced last time.

    I will be headed up there this weekend- I may have to call the onc for her tomorrow!

    Thanks for the encouragement!

    Your poor mom...
    ... Does she have anyone living with her to help her with calls? I know sometimes I get so tired, I just don't feel like calling or talking to anyone, because my mind is so disoriented from all the meds and chemo sometimes, my doctor recommended me Immodium-AD for my diarrhea, and for constipation, I take Miralax everyday for regularity, a stool softener, and sometimes ex-lax for help with it to come out...erm...a little "smoother",,, if the onc isn't giving her good meds for anti-nausea, I'd be complaining or switching oncs!

    I know your mom sounds stubborn, but she would be alot healthier with maybe some making her meals that she may be able to sleep like soups, toast, and popsicles, which worked for me, just to keep her hydrated.

    Hope she gets better soon, and gets some more help for herself :)

    ~Donna
  • fighting for mom
    fighting for mom Member Posts: 96
    #10
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    Shayenne said:

    Your poor mom...
    ... Does she have anyone living with her to help her with calls? I know sometimes I get so tired, I just don't feel like calling or talking to anyone, because my mind is so disoriented from all the meds and chemo sometimes, my doctor recommended me Immodium-AD for my diarrhea, and for constipation, I take Miralax everyday for regularity, a stool softener, and sometimes ex-lax for help with it to come out...erm...a little "smoother",,, if the onc isn't giving her good meds for anti-nausea, I'd be complaining or switching oncs!

    I know your mom sounds stubborn, but she would be alot healthier with maybe some making her meals that she may be able to sleep like soups, toast, and popsicles, which worked for me, just to keep her hydrated.

    Hope she gets better soon, and gets some more help for herself :)

    ~Donna

    Well-
    Well- My dad is there and helping as much as possible. He fixes her food as she wants it. He thinks it is kinda funny the things she wants to eat/the combos. He is just happy to fix/get anything if it'll help.

    I take or fix food when I am there and portion it and freeze it so there is always something good to eat. I made a huge pot of chicken and rice soup- that seems to be her favorite.
    Their church family has been wonderful and they bring 2-3 meals every week for them.

    The sad part is that she is on Emend and lomotil- not sure what they need to change her to.

    It is just so hard to be 4 1/2 hours away from them- I'm not able to be there like I want to be. I have a brother that lives 2 doors down from them- but I think I know more about what is going on then he does most times. He and his wife help out as they can.

    I just keep praying for a better med change and that she will get through the last 1/2 of treatments. I pray she does finish the treatments- that is how bad she is doing. She always said she would never do the chemo because it would make her so sick- like it did with her Dad/my Grandpa. The first few treatments were not a walk in the park but tolerable. Now is not so pretty. This is what she didn't want to go through.

    We never know what God has in plan for us. I just want to be able to help her through this journey as much as possible.
  • Shayenne
    Shayenne Member Posts: 2,342
    #11
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    fighting for mom said:

    Well-
    Well- My dad is there and helping as much as possible. He fixes her food as she wants it. He thinks it is kinda funny the things she wants to eat/the combos. He is just happy to fix/get anything if it'll help.

    I take or fix food when I am there and portion it and freeze it so there is always something good to eat. I made a huge pot of chicken and rice soup- that seems to be her favorite.
    Their church family has been wonderful and they bring 2-3 meals every week for them.

    The sad part is that she is on Emend and lomotil- not sure what they need to change her to.

    It is just so hard to be 4 1/2 hours away from them- I'm not able to be there like I want to be. I have a brother that lives 2 doors down from them- but I think I know more about what is going on then he does most times. He and his wife help out as they can.

    I just keep praying for a better med change and that she will get through the last 1/2 of treatments. I pray she does finish the treatments- that is how bad she is doing. She always said she would never do the chemo because it would make her so sick- like it did with her Dad/my Grandpa. The first few treatments were not a walk in the park but tolerable. Now is not so pretty. This is what she didn't want to go through.

    We never know what God has in plan for us. I just want to be able to help her through this journey as much as possible.

    I understand...
    Alot of family, my mom, my dad (who both passed away from cancer at 20 yrs old), my 2 fave aunts, and others were gone so quick from their cancers, I actually lasted longer then any of them, they were all gone before even a month, my mother, only 19 day of her dx, and most were gone in the early '80's where they didn't have the advanced technology and medicine like we have now, this is why I'm so determined to break the cycle from this beast, since it took away alot of my family, my mom died of leukemia, when I was 16, she was only 40, and was a strong woman, but this was back in 1981 before they even thought of bone marrow transplants, you bet she may have had a chance if it was in these times. The chemo nurses even told me that people are now living longer with cancer, and I hope your mom puts up a fight and not give up.

    My family is in New York, my brother is in Virginia, and best friends all over the other states, and it's hard on them being so far, and the cost of gas and them not being able to afford to come, or busy of course with their kids as well, if I didn't have such a fantastic husband, and awesome kids here at home helping, I don't know how I'd be..I wouldn't be able to do this alone, of course I been having chats with God and Jesus who on my side as well, they know how hard I want to win this!

    I hope she gets better, and good idea about freezing meals, sounds lovely, I haven't even thought of that..and chicken soup was the only thing I could get down on my first treatment when I couldn't eat for 4 days, I was able to get down a couple bowls of that.

    I will be praying for your family, and hope for the best, tell your mom to not let this beast win, and to get stronger, and let people help her! she sounds stubborn, but cool as heck, I bet she's a hoot!

    Hugssss!
    ~Donna
  • fighting for mom
    fighting for mom Member Posts: 96
    #12
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    Shayenne said:

    I understand...
    Alot of family, my mom, my dad (who both passed away from cancer at 20 yrs old), my 2 fave aunts, and others were gone so quick from their cancers, I actually lasted longer then any of them, they were all gone before even a month, my mother, only 19 day of her dx, and most were gone in the early '80's where they didn't have the advanced technology and medicine like we have now, this is why I'm so determined to break the cycle from this beast, since it took away alot of my family, my mom died of leukemia, when I was 16, she was only 40, and was a strong woman, but this was back in 1981 before they even thought of bone marrow transplants, you bet she may have had a chance if it was in these times. The chemo nurses even told me that people are now living longer with cancer, and I hope your mom puts up a fight and not give up.

    My family is in New York, my brother is in Virginia, and best friends all over the other states, and it's hard on them being so far, and the cost of gas and them not being able to afford to come, or busy of course with their kids as well, if I didn't have such a fantastic husband, and awesome kids here at home helping, I don't know how I'd be..I wouldn't be able to do this alone, of course I been having chats with God and Jesus who on my side as well, they know how hard I want to win this!

    I hope she gets better, and good idea about freezing meals, sounds lovely, I haven't even thought of that..and chicken soup was the only thing I could get down on my first treatment when I couldn't eat for 4 days, I was able to get down a couple bowls of that.

    I will be praying for your family, and hope for the best, tell your mom to not let this beast win, and to get stronger, and let people help her! she sounds stubborn, but cool as heck, I bet she's a hoot!

    Hugssss!
    ~Donna

    potassium 2.7
    Well- Dad took my mom to the cancer center early this am. Her potassium was 2.7 and severe dehydration. I figured she was dehydrated. So after 7 hours of ivs she is back home. She sounded a little stronger- not much. She also got a shot for the diarrhea. I know someone mentioned that! I was hoping for the hyocyamine and lomotil- but we'll see if the shot helps. She said her WBC count was down and doesn't think she'll get #6 on Tuesday.

    I am headed up there in the morning and help out as I can and just be there for them.

    My dad told me he had to dress my mom this am to go to the onc. I told him I hoped he put matching clothes on her- she would have a fit if she looked a mess! He laughed and said he needed more experience with knee high hose- apparantly my mom didn't think he put them on her quite right. He has had a really rough week.

    I am so glad that my boss gave me Fri- Wed off. Come to find out her Mom died of colon cancer at the early age of 48. We shed some tears together.

    Thanks for the thoughts and prayers!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #13
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    Sorry
    I'm sorry that your mom isn't doing well with this. Can her oncologist give her something for her diarrhea. When you loose that much water from the diarrhea it can make you loose a lot of important vitamins and the hydration that she needs to get better.

    Hope she is feeling better soon.

    Let us know!

    Kim
  • SandyL
    SandyL Member Posts: 218
    #14
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    Annabelle41415 said:

    Sorry
    I'm sorry that your mom isn't doing well with this. Can her oncologist give her something for her diarrhea. When you loose that much water from the diarrhea it can make you loose a lot of important vitamins and the hydration that she needs to get better.

    Hope she is feeling better soon.

    Let us know!

    Kim

    The nurses that administer husbands Oxa
    have all said that if you are having symptoms, be sure to notify the dr cause there is something that can be prescribed to help. So if she isn't being helped with his prescribed meds., keep asking. It sounds like she is really feeling miserable and I hope she gets the help that she deserves. And I hope that she realizes how lucky she is to have a caring daughter like you. Keep your chin up and know that we are praying for you and your mom and dad.
    Sandy

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