Update on new chemo treatment this week

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Eddie had his first new chemo session this past monday,iv oxalipatin and six pills daily of xeloda., well things are not going well. He came home Monday at 4pm and has been in bed since, literally, in bed other than going to the bathroom. I cannot get him to drink more than three drinks a day, therefore, I believe he is dehydrated AGAIN, no naseau or anything, he just says "he feels like he has the flu 100% worse". We are going to the doctor tomorrow as I called and said I believe he is dehydrated and needs fluids. I thought you always got fluids the next day after chemo, am I right?

I am now thinking that we may be visiting nurse association into our home as Ed is not be a good patient, everytime I go in the bedroom to ask him to drink something, he tells me to shut up and close the door. The nurses at the oncologists office said today to bring this up to the doctor tomorrow and get a plan going for them to come to the house for a while. Should I do this or am I making a mistake by making it too easy for him and then he will never get dress and come out of the room. Ed had a pet scan 2 weeks ago that showed the last three rounds of previous chemo did nothing, in fact, his cancer grew. I believe I am dealing with alot of emotional problems here as well, not sure how much is chemo related?????
I am very worried, I have a 22 year old daughter who has chronic lyme disease and this stress is making her much worse, what should I do, what should I ask the doctor tomorrow?
please help.

Linda

Comments

  • ndmp
    ndmp Member Posts: 36
    #2
    new chemo
    Linda,

    I am so sorry to hear your news. This disease is such a beast............. I know when my father was getting chemo they always gave him fluids with the chemo to prevent dehydration. Dehydration is a vicious cycle, you get weak, nausea amd then you can't eat or drink. I know this sounds terrible when you went to the Dr. Monday what did they say about the kidney function??? I know we always had blood work done the day before chemo to check liver, kidney functions and then they would go by that to increase fluids with chemo.

    I know Eddie does not want to drink anything and wants to be left alone, he is in such a terrible place. We did try "life water" with my Dad, we would cut it half and half by putting water in with the life water to cut down on the sugar content. Dad had such a difficult time drinking water it would gag him.

    Ask the dr. what the blood test results say re: kidney function, liver enzyme levels are. We had to demand fluids one time in the ER for dad, they said he wasn't dehydrated. The man hadn't ate or drank for almost 11 days of course he was dehydrated but they went by some blood test. Having the fluids did help a bit.

    Having the visiting nurse sounds like a great plan it will be another person for Eddie to see each day and they are trained in helping in situation like this.

    In my thoughts and paryers
    Nicole
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  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
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    Prayers to you and your daughter
    Hi Linda,
    From on caregiver to another, god bless both you and your daughter. This is just like my mother and I. We experience good days and bad days. Caregivers do have it rough. I agree, you do need to get someone else in to help you. A visiting nurse is a good idea. But.....Ed may need to be admitted into the hospital first. Sounds like he needs some medical attention. You need to be able to take a break every now and then. Sounds like he needs someone from the outside to speak to him. Best of luck to you and your daughter. Prayers are being said.
    Tina
  • emg09
    emg09 Member Posts: 228
    #6
    Tina Blondek said:

    Prayers to you and your daughter
    Hi Linda,
    From on caregiver to another, god bless both you and your daughter. This is just like my mother and I. We experience good days and bad days. Caregivers do have it rough. I agree, you do need to get someone else in to help you. A visiting nurse is a good idea. But.....Ed may need to be admitted into the hospital first. Sounds like he needs some medical attention. You need to be able to take a break every now and then. Sounds like he needs someone from the outside to speak to him. Best of luck to you and your daughter. Prayers are being said.
    Tina

    Hi Linda,
    Your Ed sounds a
    Hi Linda,

    Your Ed sounds a good bit like my dad. He finally did have the feeding tube placed, G tube. It got infected, he went to the ER, they cleaned it. He had chemo, same as Ed, but he's also having the 5-FU. He barely got one foot in the door after having chemo and started throwing up. It continued all night. My mom took him to the ER where they put him on fluids. It took FOREVER to get the vomiting under control. I'm happy to say he's home again and doing just ok. He doesn't really eat much. They are fianlly able to start the feeding tube again. I don't have any advice to offer, just wanted you to know you aren't alone dealing with a difficult patient. My dad fought against having the feeding tube. He wants to do everything his way, which has proven over and over not to work. But, I know it was one of the only things he could control. He finally said yes to the tube. You can have his Dr. bring this up again to him. My dad's Dr. doesn't seem to agree with the hydration after chemo. I'm not happy about that at all. I think it would do wonders for the patient. That will be another issue to discuss when he goes back on Monday. I know he seems to be hurting your feelings too. My mom complains about that all the time. I try to tell her to let it roll off her back and keep on just so she can say she tried EVERYTHING with him. Hang in there, I know it's so hard. I pray that he'll let them do the feeding tube, when it works I think it's wonderful to have.

    Erika
  • chrisk06
    chrisk06 Member Posts: 110
    #7
    emg09 said:

    Hi Linda,
    Your Ed sounds a
    Hi Linda,

    Your Ed sounds a good bit like my dad. He finally did have the feeding tube placed, G tube. It got infected, he went to the ER, they cleaned it. He had chemo, same as Ed, but he's also having the 5-FU. He barely got one foot in the door after having chemo and started throwing up. It continued all night. My mom took him to the ER where they put him on fluids. It took FOREVER to get the vomiting under control. I'm happy to say he's home again and doing just ok. He doesn't really eat much. They are fianlly able to start the feeding tube again. I don't have any advice to offer, just wanted you to know you aren't alone dealing with a difficult patient. My dad fought against having the feeding tube. He wants to do everything his way, which has proven over and over not to work. But, I know it was one of the only things he could control. He finally said yes to the tube. You can have his Dr. bring this up again to him. My dad's Dr. doesn't seem to agree with the hydration after chemo. I'm not happy about that at all. I think it would do wonders for the patient. That will be another issue to discuss when he goes back on Monday. I know he seems to be hurting your feelings too. My mom complains about that all the time. I try to tell her to let it roll off her back and keep on just so she can say she tried EVERYTHING with him. Hang in there, I know it's so hard. I pray that he'll let them do the feeding tube, when it works I think it's wonderful to have.

    Erika

    Linda,
    If the Dr. won't
    Linda,

    If the Dr. won't admit him to the hospital, then take him in through the ER. I did that with Steve a few times. I am shocked that they have not admitted him. I know what you are going through and I also know how hard it is to watch. Like I told you the other day on the phone, all you can do is to be there for him, and let him be angry. I know I would be angry. He can not control what is happening to his body, and I think that is part of the problem. Steve was the type of person who was ALWAYS in control of every aspect of his life. Then he got cancer and that demon took over and he felt like he was not in control of anything anymore. The only thing he could control was what or when he ate or drank. He said no matter how hard he fought, it never seemed to matter. I know you want to "fix" things. You can't do it alone but Ed has to let you help. How do you accomplish that? I can't answer that, you have to talk to Ed. I think the nurse thing may not be a bad idea. It wouldn't have gone over well with Steve, but I would have done it anyway. Stay strong!

    {{{{{{BIG HUGE HUGS}}}}}

    Chris
  • Donna70
    Donna70 Member Posts: 852 Member
    #8
    emg09 said:

    Hi Linda,
    Your Ed sounds a
    Hi Linda,

    Your Ed sounds a good bit like my dad. He finally did have the feeding tube placed, G tube. It got infected, he went to the ER, they cleaned it. He had chemo, same as Ed, but he's also having the 5-FU. He barely got one foot in the door after having chemo and started throwing up. It continued all night. My mom took him to the ER where they put him on fluids. It took FOREVER to get the vomiting under control. I'm happy to say he's home again and doing just ok. He doesn't really eat much. They are fianlly able to start the feeding tube again. I don't have any advice to offer, just wanted you to know you aren't alone dealing with a difficult patient. My dad fought against having the feeding tube. He wants to do everything his way, which has proven over and over not to work. But, I know it was one of the only things he could control. He finally said yes to the tube. You can have his Dr. bring this up again to him. My dad's Dr. doesn't seem to agree with the hydration after chemo. I'm not happy about that at all. I think it would do wonders for the patient. That will be another issue to discuss when he goes back on Monday. I know he seems to be hurting your feelings too. My mom complains about that all the time. I try to tell her to let it roll off her back and keep on just so she can say she tried EVERYTHING with him. Hang in there, I know it's so hard. I pray that he'll let them do the feeding tube, when it works I think it's wonderful to have.

    Erika

    Ed
    Just hearing about these troubles with chemo makes me mad that the treatment is so different for patients at different centers. Erika your father got 5 FU was it in hospital or in a center, because I was 65 and had other health problems, I was admitted for my chemo of cisplatin and 5 FU and given IVs continually to prevent kidney failure specifically and keep me hydrated after I got home, I had to go in for addition infusions of fluids. Susan, Ed needs to be admitted he does not sound good and everyone here thinks he needs major help. The visiting nurse is a good idea also but maybe after he gets some much needed hospital care and as I said before he needs to talk out his feelings with a Social worker or medical counselor. YOu will find a lot of postings from the caregivers here who have had to deal with angry spouses most of them men because they hate the weakness and disease and it is so hard to take so they take it out on those closest to them. I will continue to pray that Ed gets the help he needs, take care,
    Donna70
  • lindadanis
    lindadanis Member Posts: 235
    #9
    Donna70 said:

    Ed
    Just hearing about these troubles with chemo makes me mad that the treatment is so different for patients at different centers. Erika your father got 5 FU was it in hospital or in a center, because I was 65 and had other health problems, I was admitted for my chemo of cisplatin and 5 FU and given IVs continually to prevent kidney failure specifically and keep me hydrated after I got home, I had to go in for addition infusions of fluids. Susan, Ed needs to be admitted he does not sound good and everyone here thinks he needs major help. The visiting nurse is a good idea also but maybe after he gets some much needed hospital care and as I said before he needs to talk out his feelings with a Social worker or medical counselor. YOu will find a lot of postings from the caregivers here who have had to deal with angry spouses most of them men because they hate the weakness and disease and it is so hard to take so they take it out on those closest to them. I will continue to pray that Ed gets the help he needs, take care,
    Donna70

    update on ed
    thanks to all of you for trying to give me the best advice, we saw the doctor today and he did iv fluids, more iv fluids tomorrow and then we are back Monday for labs. We are going to have vna come to the home starting next week, I think this is a step in the right direction as they can be my go between for us and the doctor. Ed is eating a little today and started drinking last night. I asked the doctor today about putting him into the hospital and he said no, he can have the fluids right in the office. I am watching him very closely and will insist he is put in if he starts to not drink or eat again. I am getting very angry at this doctor and told him so today., I told him that my daughter was sick and that I need help asap and he agreed with the vna. will keep you all updated and thanks again for helping me out. No, they are not putting in a feeding tube nor will ed agree to it. I think he is on the line with getting more chemo but eddie is the one who signed on the dotted line for more this past Monday., hopefully, it will be doing something positive. I do believe that you have to have a positive attitude towards any cancer in order to fight it properly. eddie has never had a good attitude about this cancer, I feel that the day he was diagnosed in october, a big part of him just gave up that day. I pray every day that this will change, something inside of him will change, he does see a therapist but only goes once or twice a month.
    Linda

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