Turn for the worse. Update.

rls67
rls67 Member Posts: 127
edited February 2014 in Colorectal Cancer #1

My wife has stage 4 cc. This past oct-nov, I don't remember, the dr. wanted to stop chemo. But my wife and I talked him into trying folfiri agsin, because she seemd to have the best results from it.

Well since late friday early saturday she seems to have taken a downword turn. She is unable to get out of bed on her own. She is having lower intestinal pain and pain in the left shoulder which she has never had. She is extremely weak. Hardly eats anything and sleeps most of the day. She has lost about ten pounds in the last three weeks. I am sure she has lost more since. She has also lost her voice. She can barely speak louder than a whisper. She has had three treatments of folfiri since starting it again.

I don't know what to do. I can't leave her home alone. Should I call her dr. or just take her to the ER? I know she doesn't want to go. But I am having a hard time taking care of her. I am also afraid they will tell us there is nothing more they can do for her. That would just kill me. Does anyone have any advice?

 

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Comments

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #2
    I'm sorry.  Yes, I would take

    I'm sorry.  Yes, I would take her to the hospital and have her admitted.  Your not a healthcare professional and your not trained to look after someone who is sick.  They will be able to keep her comfortable and get her pain under control.  It will be the best for both of you that she be in the hospital where she can be properly cared for.

    I think it's possible that they are not going to want to treat the cancer any further. Her options have been limited and it may not be best to put her through any more chemo.  I have been in this spot with Steve and know how hard it is to face.

    Wish I could write more but I have to get to work.  So sorry about all this.

    Take care,

    Chelsea

  • PatchAdams
    PatchAdams Member Posts: 271
    #3
    Heart Failure

    Folfiri and other chemos can cause heart failure which might present as the shoulder pain and weakness.  I'd suggest calling an ambulance and having her admitted.

    It the oncologist felt, 6 months ago that chemo was not going to help, then you probably are out of options.  Quality of life is important at this time and she needs to be evaluated to let you know where she stands. 

    I'm sorry you're having to go through this.

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #4
    So sorry you're going through this!

    I'd get her to the hospital asap. When they release her, they may send her home with a visiting nurse. Maybe you should look into hospice to help you out. Just because you have hospice coming in, it doesn't mean you're giving up. You just want her to be cared for and comfortable. Good luck.

    Lin

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #5
    Get some help

    You should call her doctor for sure.  Pain management is critical for the patient.

    If the doctor determins there is nothing more to do, he may suggest calling Hospice.  My experience with my sister was that Hospice made her last days with us so much better...for her and the rest of the family.

    If the doctor feels she is not at that point he can at least help you get in visitng nurses or home care.

    As a caregiver it is difficult to watch our loved one fade, but we must be strong and do what is best for them.

    Marie who loves kitties

  • devotion10
    devotion10 Member Posts: 623 Member
    #6
    Please contact your wife's doctors ...

    I am very sorry to hear that your wife's health is failing. Speaking from experience of caring for my husband at the end if his life ... it is possible that your wife may be nearing the end of her journey ... BUT you need professional help to assess her condition and make sure she is comfortable.

    You really need to face that with a stage four cancer diagnosis that has not been able to be controlled, there comes a time when there will be nothing more the doctors can do for her with their treatments ...

    but, that does not mean that nothing more should be done for her. Her comfort and dignity should be immediately considered. You are going to have to put your feelings aside and be in the moment with her so that you can help her.

    And no ... in my opinion, ths is not a time to leave her alone. You, friends, family, home nursing, maybe hospice need to step in as she sounds quite dependent at this point on the care of others.

    My heart goes out to you. Please keep us updated. We are here to support you.

    Peace and strength. ~ Cynthia

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #7
    I'm so sorry to read this.

    As others have said, it would be best to take her into the hospital for evaluation and to get her stablized.  They should be able to sort out what is due to the chemo and what is being caused by the cancer, which may help you to make a decision about what to do next.  And I would call her doc first, as they might be able to expedite the admissions process.  She shouldn't have to sit in the ER for hours.

    Palliative care should definitely be involved at this point, no matter what is decided.  They will make sure she is as comfortable as she can possibly be, and provide you with some support as her caregiver.

    Is there anyone else in the family who can help you with all of this?  Parents, siblings?  Or your kids?

    Please reach out to anyone who cares about your wife.  When my sister was at the end of her life, it was very hard for my BIL to ask for our help.  I finally kind of just barged in and got various members of our family lined up to spend time with my sis, and give her husband a hand.  It was only for the last couple of weeks, and I wish we would have done it sooner.  My BIL wishes that too, in retrospect  So if you haven't gotten close family involved, now would be the time to do it, imo.

    This is such a hard road to walk.  I wish there was something I could do to make it easier for you guys.

    Love and strength to you both~AA

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #8
    Be at peace

    Now is the time to let your wife know you have the strengh to carry on, even if she does not.  She may very well be fighting for your life and not hers. 

    I pray that you will find peace as your wife fights for her peace. It will help her allot more than fighting with fear. 

    How very heart wrenching this is. Please know that your beloved and youself are in my thoughts and prayers. 

     

  • teamzach
    teamzach Member Posts: 35
    #9
    Praying

    I sure hope you are able to get her pain under control.  Keep your wife as comfortable as you can...and just love on her....talk to her and be with her.

    My thoughts and prayers are with you as you go through this...keep us posted.

     

    Janelle

  • marbleotis
    marbleotis Member Posts: 720 Member
    #10
    Contact her Dr

    It sounds like she is suffering.  She needs you to step in.

  • Meowycat
    Meowycat Member Posts: 66
    #11
    I would definetly have her

    I would definetly have her hospitalized so that they can manage her care. You dearly love her and want to abide by her wishes but remember that we as care givers are not healthcare professionals and can only do so much to help our loved ones.

    I would brace yourself for whatever "news" they will give you on what her next steps should be (Palliative, Hospice, at home aide/nurse service). It's hard hearing bad news (Lord knows many of us have)but once you have a game plan you will be able to make her comfortable and be able to take care of her with hopefully some help. Do not be afraid to ask for help from friends and family. Many want to help but don't know how to go about it.

    Lastly know that all of us on this site are here for you. That you have support and I will surely send all my best wishes and good vibes.

    Never give up hope. Never lose heart.

    Huggies,

    Nellie

  • rls67
    rls67 Member Posts: 127
    #12
    Thank you so much for your help.

    I called her onc. and he told me to call 911. This was about nine this morning. We are still in ER waiting for her to be brought up to her room. They found a mass in one of her intestines. They believe it to be. malignency. They say she is not able to have surgery because of her cancer. We will be meeting with her Dr. about what to do next. Right now they have a hose in her nose draining fluid from the blockage. Don't know if she can continue her treatment or not. Thank you all for your support, I truly appreciate it.

  • devotion10
    devotion10 Member Posts: 623 Member
    #13
    rls67 said:

    Thank you so much for your help.

    I called her onc. and he told me to call 911. This was about nine this morning. We are still in ER waiting for her to be brought up to her room. They found a mass in one of her intestines. They believe it to be. malignency. They say she is not able to have surgery because of her cancer. We will be meeting with her Dr. about what to do next. Right now they have a hose in her nose draining fluid from the blockage. Don't know if she can continue her treatment or not. Thank you all for your support, I truly appreciate it.

    You did the right thing to get her to the ER ...

    it sounds like it has been a very long day for both of you.  I hope that very soon you will be in a room and can have some quiet time together.  

    Don't worry about her continuing the treatment as the mass in her intestines is evidence, I would think, that the treatment was perhaps not effective.   I don't quite understand what you meant by her not being able to have surgery because of her cancer ... surgery is sometimes done for pallitive, not curative, reasons when people have pain or blockage. Wait until you get information from her doctor.  Remember that folks in the ER are there to stabilize a patient, but do not have the expertise that your wife's cancer doctors have who are most familiar with her disease.

    As I understand, that accumulation of fluid in the abdominal cavity can feel quite awful and draining of those fluids should provide some relief.

    This may be the start of a rough period for you and I wish I could change the course of your wife's disease and what lies ahead.  Be as strong as you can for her and treasure your time together.  Find whatever moments of joy and love that you can muster. She is still with you, be with her.

    Peace. ~ Cynthia

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #14
    rls67 said:

    Thank you so much for your help.

    I called her onc. and he told me to call 911. This was about nine this morning. We are still in ER waiting for her to be brought up to her room. They found a mass in one of her intestines. They believe it to be. malignency. They say she is not able to have surgery because of her cancer. We will be meeting with her Dr. about what to do next. Right now they have a hose in her nose draining fluid from the blockage. Don't know if she can continue her treatment or not. Thank you all for your support, I truly appreciate it.

    I was thinking the same thing as Cynthia.

    When you see the doctor, maybe you can ask why they can't remove the mass. If it is blocking the flow of her intestines, it would be done to make her more comfortable. Maybe there's a reason that we're not aware of. I hope she's feeling better soon.

    Lin

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #15
    rls67 said:

    Thank you so much for your help.

    I called her onc. and he told me to call 911. This was about nine this morning. We are still in ER waiting for her to be brought up to her room. They found a mass in one of her intestines. They believe it to be. malignency. They say she is not able to have surgery because of her cancer. We will be meeting with her Dr. about what to do next. Right now they have a hose in her nose draining fluid from the blockage. Don't know if she can continue her treatment or not. Thank you all for your support, I truly appreciate it.

    I have no advice, but wanted
    I have no advice, but wanted to offer my support and prayers. I'm so sorry you and your wife are dealing with this.
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #16
    I am glad you got her to the

    I am glad you got her to the hospital. I am so sorry for what you are going through. It was heartbreaking reading your origonal post.

  • here4lfe
    here4lfe Member Posts: 306 Member
    #17
    rls67 said:

    Thank you so much for your help.

    I called her onc. and he told me to call 911. This was about nine this morning. We are still in ER waiting for her to be brought up to her room. They found a mass in one of her intestines. They believe it to be. malignency. They say she is not able to have surgery because of her cancer. We will be meeting with her Dr. about what to do next. Right now they have a hose in her nose draining fluid from the blockage. Don't know if she can continue her treatment or not. Thank you all for your support, I truly appreciate it.

    Sorry To hear

    At least they found the source of the disconfort. Just know that this is the time to talk to your wife, let her know how you feel about her, and any wishes for the future.

    Mark

     

  • rls67
    rls67 Member Posts: 127
    #18
    Update

    We were told last night by the oncologists that there was a mistake made when her ct scans were read this past december when she was hospitalized. They compared the scans from december 2013 to scans done in october of 2012. They thought they were looking at the scans from Oct 2013. Well the oncologist who caught the mistake compared ct scan taken monday to the dec 2013 scan and found no new growth! Her blood labs have stabled out andd improved immensely. She still has the kink in her intestine which is causing her all the pain and problems. The doctors seem confident they can unkink that without surgery. Which was until yesterday ruled out of the question. It may no longer be ruled out given the new results. We should have some answers by the end of the week. What a rollercoaster ride this has been. Thank you for all of your support and keep the prayers coming. She is not out of the woods yet.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #19
    rls67 said:

    Update

    We were told last night by the oncologists that there was a mistake made when her ct scans were read this past december when she was hospitalized. They compared the scans from december 2013 to scans done in october of 2012. They thought they were looking at the scans from Oct 2013. Well the oncologist who caught the mistake compared ct scan taken monday to the dec 2013 scan and found no new growth! Her blood labs have stabled out andd improved immensely. She still has the kink in her intestine which is causing her all the pain and problems. The doctors seem confident they can unkink that without surgery. Which was until yesterday ruled out of the question. It may no longer be ruled out given the new results. We should have some answers by the end of the week. What a rollercoaster ride this has been. Thank you for all of your support and keep the prayers coming. She is not out of the woods yet.

    Wow.  That all sounds great.

    Wow.  That all sounds great.  Funny how it can all seem so bleak at times and next thing you know, things are looking up.  Hope the news continues to be positive.  You must be feeling much better about it all.

     

     

  • rls67
    rls67 Member Posts: 127
    #20
    Chelsea71 said:

    Wow.  That all sounds great.

    Wow.  That all sounds great.  Funny how it can all seem so bleak at times and next thing you know, things are looking up.  Hope the news continues to be positive.  You must be feeling much better about it all.

     

     

    Thanks Chelsea,

    You are right. It goes from one dr telling you if they can't fix her, there is nothing they can do. To another dr telling you he has great news! I hate thinking every little thing could be the beginning of the end. It's to much to take sometimes.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #21
    rls67 said:

    Thanks Chelsea,

    You are right. It goes from one dr telling you if they can't fix her, there is nothing they can do. To another dr telling you he has great news! I hate thinking every little thing could be the beginning of the end. It's to much to take sometimes.

    Thats great news. What a

    Thats great news. What a roller coaster ride you 2 have been through. Its tuff to forget the lows but celebrate the highs or good news.

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