Advice please

midnte0708
midnte0708 Member Posts: 166
edited March 2014 in Colorectal Cancer #1
I'll try to make this short and to the point. The doctor tell us nothing really and I hope some of you can provide some guidance.

My dad was seen by doc 10 days ago ,routine appt, doc told him 2nd line treatment (FOLFOX) failed per cat scan. The liver tumors that were stable for 3.5 years have all increased in size. (He was still working full time as of 10 days ago.)
The doctor gave him 2-3 months to live and sent him home with Xeloda and said "hey you never know."

I set up appt for him for a 2nd opinion at Roswell in Buffalo on April 8th.

Then almost instantly (but I'm sure it was going on gradually) he became bedridden.
Now, liver is obviously failing. He is very jaundice, stomach filled with fluid, sleeps constantly, eats less and less each day (maybe a bite of pancakes), but he is still drinking about 2-3 glasses of grape juice. He is also very very weak.

The doctor did say he would sleep more and more and pass peacefully, thats about all he said.

My questions are, is it pointless to continue to give him Xeloda still?? He's been on 4 pills a day for 11 days. I don't see any change for the better. Would I have seen change??

Is it pointless to bring him in to his regular doc appointment friday? I'm not even sure we could get him in the car.

My gut feeling is that Roswell is a lost hope, do doctors even look at patients in this condition?? I don't want to assume he is too ill to go but I don't want to drag him there for no reason either. I don't know what to do.

No, I'm not completely in denial but, is there ever a turn around in a patient whose liver is failing like this?? If the tumors were stabilized with Xeloda would it buy him more time, would another doctor take a chance??

Thanks,
Sue

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    No experience with this.
    Sue,
    I'm sorry to hear about your Dad, you say he was still working about 10 days ago. Had he been in treatment that whole time since 3.5 years ago or did he stop for a while then get hit with this again? I did do the FOLFOX treatment and it worked 4-5 years ago but I have not been on Xeloda at all. I'm currently on Erbitux but that is for lung mets.

    I'm sorry I can't give anything really helpful. Hopefully someone with some experience with that medication can offer some advice.
    You'll be in my thoughts..
    -phil
  • kmygil
    kmygil Member Posts: 876 Member
    #3
    Call Around?
    Hi Sue.

    I'm sorry you are dealing with something so heart-wrenching. Instead of dragging your dad to various doctors, can you call around and see if there is a doctor who is interested in taking a look? If your Dad is very jaundiced and getting more so, his liver is failing rapidly. On the other hand, the liver is very flexible at times, so perhaps there is a doctor who can help. If not, know that you are both in my prayers.

    Hugs,
    Kirsten
  • kimby
    kimby Member Posts: 797
    #4
    Sue
    Sue,

    Is it possible to talk to a local liver specialist? That seems to be the most immediate issue. Maybe even in his current canzer center? I don't know enough to be helpful, but I think getting him through this current liver issue might buy you (him) some time to try something else.

    You are in my thoughts and prayers,

    Kimby
  • mindy10
    mindy10 Member Posts: 182 Member
    #5
    Hi Sue, to answer your
    Hi Sue, to answer your question of will dr's look at him at this point my answer is they will look at him but treat him with chemo I dont think they will. We brought my dad for a second opinion and my sister could barely get him into the car and he was in a wheelchair and the dr took one look at him and said he would have to go home and get stronger and gain some weight before they would even start him on chemo again. To me all the second opinion did was put my dad in further pain from the traveling. Maybe you should ask your dad what he wants. It got to the point that we asked our dad what to you want to do and he wanted to stop treatment. So at that point we stoped everything called in Hospice and spent all the time we could with him. I think it gets to the point that you have to do what the patient wants to do. Im thoughts are with you. Mindy
  • midnte0708
    midnte0708 Member Posts: 166
    #6
    PhillieG said:

    No experience with this.
    Sue,
    I'm sorry to hear about your Dad, you say he was still working about 10 days ago. Had he been in treatment that whole time since 3.5 years ago or did he stop for a while then get hit with this again? I did do the FOLFOX treatment and it worked 4-5 years ago but I have not been on Xeloda at all. I'm currently on Erbitux but that is for lung mets.

    I'm sorry I can't give anything really helpful. Hopefully someone with some experience with that medication can offer some advice.
    You'll be in my thoughts..
    -phil

    Thanks Phil
    Yes, he has been working continuously since being diagnosed 3.5 years ago, also continuously on chemo. The doctor said he couldn't take Erbitux, they tested him. I'm glad it is helping you. The FOLFIRI + Avastin kept him completely stable for 3 years until he developed small lung nodules, thats when they put him on FOLFOX alone. This did not work. The doc did think most of the liver mets were "calcified" at one point.

    Thanks,
    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    #7
    kmygil said:

    Call Around?
    Hi Sue.

    I'm sorry you are dealing with something so heart-wrenching. Instead of dragging your dad to various doctors, can you call around and see if there is a doctor who is interested in taking a look? If your Dad is very jaundiced and getting more so, his liver is failing rapidly. On the other hand, the liver is very flexible at times, so perhaps there is a doctor who can help. If not, know that you are both in my prayers.

    Hugs,
    Kirsten

    Thanks Kirsten
    I just might make some calls tomorrow! Thanks for your prayers.

    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    #8
    kimby said:

    Sue
    Sue,

    Is it possible to talk to a local liver specialist? That seems to be the most immediate issue. Maybe even in his current canzer center? I don't know enough to be helpful, but I think getting him through this current liver issue might buy you (him) some time to try something else.

    You are in my thoughts and prayers,

    Kimby

    Thanks Kimby
    I asked the doctor about stints in liver, more chemo, etc.... It is like talking to a wall. I just want to make sure I have done everything. Everything seems like it is happening so fast. I think I will call the doctor again tomorrow.
    Thanks for your thoughts and prayers.

    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    #9
    mindy10 said:

    Hi Sue, to answer your
    Hi Sue, to answer your question of will dr's look at him at this point my answer is they will look at him but treat him with chemo I dont think they will. We brought my dad for a second opinion and my sister could barely get him into the car and he was in a wheelchair and the dr took one look at him and said he would have to go home and get stronger and gain some weight before they would even start him on chemo again. To me all the second opinion did was put my dad in further pain from the traveling. Maybe you should ask your dad what he wants. It got to the point that we asked our dad what to you want to do and he wanted to stop treatment. So at that point we stoped everything called in Hospice and spent all the time we could with him. I think it gets to the point that you have to do what the patient wants to do. Im thoughts are with you. Mindy

    Thanks Mindy
    Thats what I was afraid of. I'm just going to take each day by day and see how he is, maybe make a few calls tomorrow and see how far I get.

    Thanks,
    Sue
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #10
    So sorry
    Sue,

    I don't have any experience with this, so I don't have any constructive to offer in the way of advice. But I just want to tell you that I am very sorry for all you and your dad are going through. I do hope that someone can give him some relief.

    *hugs*
    Gail

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