• From: Staten Island, New York
  • Registered: Thu, 21 Jun 2012
  • Posts: 6

Topic: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

My loving 61 yr. old husband was diagnosed with bile duct cancer May 2011. He had a failed surgery to resect his liver and remove tumor @ Memorial Sloan Kettering, (Dr. Fong)  becasue the cancer spread to lymph nodes in abdoman and it is his protocal not to operate. He has had chemo (oxyplatin, gemzar) then radiation and now he is trying for another round of chemo at Columbia NY Presb. Hosp.
He is so weak now and lost so much weight and he has developed ascites (has had two paracentises so far and they said some people go weekly). Its such a terrible disease. Just dont know what else to say. My son told me I should join this and that it might help me cope.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,212

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Dear Mmead, welcome to our extraordinary family but sorry you had to join us. Yes, this is the best place to be for coping with the CC Monster. I found this site when my husband was stricken and I am addicted to it now. You will meet the most loving, caring and courageous people from all over the world. We are all in this together. NY Presb. is an excellent choice and perhaps they will come up with some new game plan for you. All I can say at this point is USE us, and be very, very strong. Please keep us posted as we truly care. Good work from your son!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Staten Island, New York
  • Registered: Thu, 21 Jun 2012
  • Posts: 6

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Do you have cancer or did you loose a family member. I read that the contents of my posts should be positive so here goes. Its been a little over a year and he is still living home with me and going for treatment smile

  • From: Staten Island, New York
  • Registered: Thu, 21 Jun 2012
  • Posts: 6

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

oops I didnt read your post carefully. Sorry for your loss. I know what you mean about being addicted to a group. I lost twin babies 22 years ago and I continued participating in the group at the hosptial for about 10 years and I still subscribe to the newsletter PS Support and donate yearly. It keeps my babies alive inside of me.

  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,831

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Dear Mmead,

Welcome to the site. I too am sorry that you had to find us all and I am sorry also to hear about your husband. But I am glad that you have joined us here as I know that you will get a load of support and help from everyone here. I came here back in 2008 after my dad was diagnosed with inoperable CC and for me, it was the best thing that I could have done. It certainly helped me being around people who knew what I was feeling like and what I was going through. And I am sure that it will help you as well coming here. Please keep coming back and let us know how everything goes. And if you want to shout, scream or vent then please do so as well. We are all here for you.

Best wishes,

Gavin

  • From: Staten Island, New York
  • Registered: Thu, 21 Jun 2012
  • Posts: 6

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Thank you Gavin, Im kind of numb right now but its good to know I can vent here. My friends and family have been great but I hate to be a burden.

The worst thing about this disease is watching him so sad and the next worst thing is watching m sons suffer wataching him. They are both young men but I hate to see them see him like this. Just hoping for some more time.
He goes to the onc on Monday.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,212

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Oh my gosh, Mmead you have certainly had enough loss in your life. If you and your sons ever feel you need some other outside help the hospitals do have social workers who can help. I found the most important thing was to be strong in front of Teddy and that went for everyone. You see, when we got the diagnosis he spent a few days steeling his mind for what had to be and what may be and he let me know several times that all he asked for was for everyone to be strong in front of him or he could not get through this. So, we were all strong in front of him which helped us and him get through this journey. By the way this is an open forum so feel free to vent or write what ever you want. If we feel something we write may upset others we have been labeling the post SENSITIVE. I am waiting for Monday and hope to hear some better news!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,831

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Hi Mmead,

Yes unfortunately I too know that numb feeling that you talk of as I felt that many times as we got news that we did not want to hear about my dad and his CC. You are not in any way a burden and I am sure that your family do not think that either. And please, do not ever think that you are ever a burden here either, absolutely not at all!!! You keep coming here, talk about what you want to, say what you want to and know that we are here to listen to you, talk to you and to support you through this all the way. And if you feel like shouting and screaming sometimes too, then that is fine with us as well! Let us know how things go on Monday.

Hugs,

Gavin

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Hello Mmead,

Welcome and I am also sorry you have a need to be here, but you will find a lot of support and information here.

Sorry to hear about your husband and his difficulties.  I hope that the new round of treatment is the trick that will turn things around for him.

oh and you do not always have to post positive things.  We are here for you no matter what you post.

Take care.
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Dear Mmead,

I think your son is a smart guy to urge you to join this site!! Welcome and I am sorry you had to join. I'm really sorry your husband is having such a hard time. That must've been so awful to have your husband go to surgery and then come back out not being able to have the resection. That is my worst nightmare for my daughter. That she will finally be able to have the surgery she so desperately wants, and then have her surgeon not be able to do it. I pray that his chemo will work or the doctor comes up with another plan for your husband. You sure are right when you say this is such a terrible disease. No one should have to go through this. Take care and I will pray for you and your husband.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • Registered: Sun, 28 Nov 2010
  • Posts: 139

Re: Im new here afrom NY and a caretaker for a cholangiocarcenoma patient.

Hi MM,

Welcome to the site.

I hope your husbands chemo went well on Monday. 

My husband was diagnosed at NY Presb but is being treated in westchester county near our home. We're neighbors!

Stay connected, I think you'll find a lot of support here.

Peony