NEED FEEDBACK ON THIS LONELY ROAD

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desnee2029
desnee2029 Member Posts: 28
in Colorectal Cancer #1

My DH took his 6th Chemo today.  half way to twelve.......twice a month home with 26hour 5fu at home.  Our routine is go to prompt care in the back to get need back in port sometimes bloodwork.  Then talk Onocologist .  He starts out with how are you an seens to hit on the negitives more than uplifting...which I AM AWEAROF THE DOWN SIDeS BUT he mentioned his tumors shrunk big one 30% ans some others 1o.  HE said if they do that two more times not enough. to have liver resection and keep saying he wont be cured best we can hope for is longer life.  After 12th chemo maintainence that won't shrinKi THEM  then when it grows another chemo but he wont listen to other posibilities spheres, a pump, ablation,CYBER KNIFE ETC.  I LOVE MY HUSDAND and ge t so worried at times.  doc says ALL OF The small tumors have to disapear for other treatments he has a big one coving both lobes and smaller ones inside and out maybe.  we have the ct scans but no one has ever othered to explain them or tell us how many met.  also he has to do a twenty four hour urine specimine for protein?  I ask for blood work copies but hard to read.  abnormal shaped red blood cell.  iron loss from possible bleeding tumors but I GUESS too much protein in urine they stop part of chemo for a while whick is scary....would it grow them.  tONIGHT I feel the onocolgist is holding somethink back

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  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #2
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    Doctor's Beside Manners

    Some doctor's just tell it like it is and go for the problem areas first.  I'd rather have a doctor that is more diplomatic and encouraging than a negative nelly.  Maybe the doctor just wants to wait to see the results of the treatments before making any major decisions on moving forward.  Is it possible that you get a second opinion.  It wouldn't hurt to hear another possible treatment opinion with possibility of surgery.  Wishing him the best and thanks for being such a good and caring wife.  It is very difficult for a caregiver and you don't always get the credit you deserve. 

    Kim

  • desnee2029
    desnee2029 Member Posts: 28
    #3
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    Thank you Annabelle

    For your encouragement.  means so much.

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #4
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    HAI - Hepatic Arterial

    HAI - Hepatic Arterial Infusion is the most successful chemo at shrinking liver mets and converting unresectable patients to resectable.  Memorial Sloan Kettering has the most experienced  dr for HAI.  A few other places in the US do it, but lesser/local oncologists often pooh-pooh HAI though, because they read about 30-40 yr old versions of its use and haven't updated themselves accurately.

    Oncology all too often promotes, only service what they sell, and pooh-pooh others' advanced treatments that they really don't know much about.  Sometimes they're outright rude about it, and will scare less prepared patients into "compliance".

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #5
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    It's very scary

    my husband also has mets to his liver, we need them to shrink to get what will be his second resection. We have switched oncologists twice. The first one  ( saw him for 7 years) was a horrible man, he was mean, called me and my husband names and did nothing. The second one was very kind, but said he was unresectable and basically was giving up on him. The new one came in with a plan, very positive and said her goal was to cure him.  Get a second opinion from another dr at big hospital that specializes in GI cancer. I am very sorry you are going through this.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #6
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    You are not alone, Desnee

    I felt so alone until I found this board.  I just got a big tumor removed and will have to deal with my liver met next.  I dread it bc my Onc isn't giving me awhole lotta hope at this point.  Not sure why as I see others being cured here.  

    Hang in there.  We're on this crappy path together and help hold each other up.  I am inspired almost daily by someone here.

    We are all pulling for your husband.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    #7
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    Second opinion

    I agree wth Ruth, that you may want to get a second opinion. I can't believe some of the stories I hear about peoples treatment. Doctor's are supposed to be compassionate and understanding. And they are supposed to tell their patients what is going on. 

    Make sure you are taking a little time for yourself. You can only give so much before you start breaking down yourself. 

    It is a hard life being a caregiver.

    We are here for you. 

    Tru

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