Topic: Any feedback are greatly appreciated.

Hello Guys my name is John and my dad has Cholangiocarnoma since december 2007. The first cancer my dad had was Lymphoma in 2005 and went to chemo successfully so he was in remission stage. After he started working out and eating the healthiest diet you can think of. On December 07, 2007 we all went on a family cruise and we notice his skin was turning yellow. So we went to the doctor and he was diagnosed with cc with jaundice being one of the side effects. He then started his chemo and finish his chemo on 05/01/08. Then on 05/02/08 he started feeling very sick,skin was very pale, also having chills and then we had to take to the ER. They found out that he had an infection and  also found  out the tumor was spreading all over his bile duct. The plan was he would take antibiotics for 2 weeks and they would start chemo again only if  his bilurubin would be below 5 if not they can't start chemo and they predicted only 3 months to live.  The infection went away but his bilurubin was very high,in fact it was 15. So the doctor told us today that he would go to a hospice facility or he has the option to go back home to spend his last days  and the hospice would set up all the equipment and have the nurses come to the house. I just feel really depressed and sad right now, also helpless. I was wondering if anybody has ran across this situation and have any other options because the doctor told us right now his cancer is the last stage and critical and there is no other options. Any comments or feedback would be appreciated.

2 (edited by marions Tue, 08 Jul 2008 00:59:15)

Re: Any feedback are greatly appreciated.

Hello John,
I welcome you to our site although, I am so sorry for the circumstances leading you here.
The news you have received is devastating to anyone, no matter what age we are.  My heart goes out to you and to your family. 
Generally, I believe in gathering several opinions from varied sources before accepting a diagnoses especially, as it is in your Dad

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

3 (edited by JeffG Tue, 10 Jun 2008 04:20:25)

Re: Any feedback are greatly appreciated.

Hi John.. So sorry to here about your dad.  Did you get a second opinion ? Did any doctors think placement of a stent would not give him comfort and extend his life?   or put in a billary Drain? Maybe that has already been done, to reduce the juandice and get he bile flowing? What age is your dad?  Maybe it is gone to far but if extending life without causing pain and suffering is what is seek , may a second opinion be something to consider. It sounds as though he has had a rough time health wise though and maybe he is ready to let go if he's really eldery.  It's so tuff and painful  at any age as you said.  My heart felt feelings go out to you and your Family.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Any feedback are greatly appreciated.

We can just feel your pain and frustration. My husband jaundiced and had CC in the bile duct valve. We were fortunate that it had not spread and he had a Whipple Surgery. That was 2 1/2 years ago. We found out last week that it has come back where the duodenum used to be. We are seeing a doctor tomorrow who does cyber knife surgeries and hoping he will take Teddy on and do it quickly. The point is this cancer is a silent monster until it rears it ugly head.
We are so sorry you had to join our little community this way but it sure helps to write about it.  Lots of very thoughtful, wonderful people on this site.
Our thoughts and prayers go out to you and your family.  Lainy

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.

Re: Any feedback are greatly appreciated.

Hello John,
    I am so very sorry to hear about your dad and can understand your fear and frustration. Were stents ever mentioned? I had 2 placed when my billi was 13, because they wouldn't do surgery with it that high. My thoughts and prayers are with you at this time.  Sarah

Inner strength

Re: Any feedback are greatly appreciated.

Hello,
My name is Barbara, my husband is  Frank.  His doctor gives him about 2 months.  She said that because his bilirubin in 5.7, there are no trials available for him.  And because there are too many tumors, radiation, transplant, or any of the other newer methods won't work.  I am not ready to give up.  If anyone has any suggestions, please let me know.  Thanks.

Re: Any feedback are greatly appreciated.

Hello,
My name is Barbara, my husband is  Frank.  His doctor gives him about 2 months.  She said that because his bilirubin in 5.7, there are no trials available for him.  And because there are too many tumors, radiation, transplant, or any of the other newer methods won't work.  I am not ready to give up.  If anyone has any suggestions, please let me know.  Thanks.

Re: Any feedback are greatly appreciated.

Hi Barbara..... Sorry to hear of your husband Frank's condition.  Not to be nosey  but what has been done for Frank?  Has any stents been put in or a line to get his billibrium count down?  Where is his tumors located?  Also, the standard question, has he had more than one opinion of his condition? I have several tumors but that does'nt mean I'v'e only got two months. Has he been actually diagnosed with scans and biopsy.  Has he been having pain and juandice?  I'm sorry to ask so much about such an emotional subject, I's just hard to suggest anything not knowing a little more.  Barbara please scroll to the top of page and click on Newly Diagnosed or Cholangiocarcinoma.  It will give you a lot of information you might want to know.  If you have any specific questions, please do post and ask as someone will suggest what ever they may have is experienced.
Again , I'm so sorry this disease has touched your life but if we can suggest something to help in some way we will.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Any feedback are greatly appreciated.

Hi Barbara,
Last year May, after a broken off surgery, my husband got 2-3 months as a life prediction. That is a year ago now. Hang in there, don't give up. Try to do the things that make your lifes worthwhile, let him eat well and ask for second opinions. We are enjoying every day as a gift and it makes us happy! Good luck to you two.
Iris.

Re: Any feedback are greatly appreciated.

Hey John...I would like to send a little encouragement your way...when were back in Minnesota at Mayo....the docs gave Lee 2 months to live because the cancer had spread....he was the sickest he had ever been...much like your father....we actually believed them...however, we knew that God was the one who could say how long Lee had...he was supposed to "be gone" last week and is better now than ever!!!! Do what the others have said...keep pressing on and see what else can be done!

Heather

Re: Any feedback are greatly appreciated.

John,

How old is your father? My mom is 66 and I really think age is a big factor, from her experience, this cancer takes no prisoners and ravages the body. There is research being done but we find that my mother doesn't qualify for the trials. It sounds like your father would not qualify either but here is a post I found in the Research section of this board, which offers some hope for those with advanced cholangiocarcinoma:

http://cholangiocarcinoma.org/punbb/vie … hp?id=1455

You can find trials at:

http://www.clinicaltrials.gov/

My mother is taking milk thistle and there are posts on here on all kinds of supplements:

http://cholangiocarcinoma.org/punbb/vie … p?pid=7669

http://cholangiocarcinoma.org/punbb/vie … php?id=479

http://cholangiocarcinoma.org/punbb/vie … hp?id=1296

http://www.cholangiocarcinoma.org/punbb … php?id=173

Re: Any feedback are greatly appreciated.

John,

In addition to what the others have asked, are you here in Houston?  Is your dad seeing someone at MD Anderson?  It is all very frustrating to read - I hate to see that he's been turned away with no options. 

I'm here in Houston, and would be happy to meet up and talk at any time.

-s

30-something caregiver

Re: Any feedback are greatly appreciated.

John,

My husband(his name is John ) also receiced the hospice talk last week. He just turned 53 Saturday and asked for another choice. The doctor has given him a new treatment with 3 different chemos its a long shot and the doctor doesn't give us much hope. At his blood work last week his bili was 17.6 so don't let then tell you that no treatment is out there. Unfortunatly, it just isn't all that effective in most cases. Your dad must weight the option and make a choice thars right for him. Any chemo takes it toll on the body and in some cases its a quality verses quanity choice. Is your father able to make his prefrences known? If so , in my opinion I would follow his wishes.

If its any consolation we're in the same sinking boat.

Love , prayers, and best wishes.

Alice

Re: Any feedback are greatly appreciated.

First I wanted to thank you guys for all the support but unfortunately My Father past away on June 30, 2008 after 6 months of the long battle with cancer. I'm very sad and depressed about my dad  being gone, its going to be hard for me to wake up and live my life but im sure hes happy in heaven and being taking care of God. Sara to answer your question yes im in houston and my dad went to MD Anderson. I just couldnt believe the doctor gave up on him ,knowing that MD Anderson is one of the best cancer facilities in the world but im sure they did their best hopefully. It would be a pleasure to meet and talk to you in houston.

Alicia I'm very sorry about your husband and I will keep him on my prayers. Make sure to motivate him to keep his fighting spirit and beating this evil desease. Another advice I can give you if your husband is ever given the hospice option is to make sure to choose the home hospice because you can prolong his life in home enviroment rather than in the hospice facility. After so many months in and out, all the chemos that my dad went through he was so happy to come home and spend the last 3 weeks at home. We cook or bought whatever he wanted for food. I would also take him for a walk to our lake close to our house and he even sang frank sinatra songs in our karaoke machine. I took off couple months from work to spend those last days with him and im so glad that I did. Also I'm thankful he was able to spend my birthday with him before he past away. Just make sure to tell him how you feel, how much you love him and appreciate everything that he has done for  you. Only you will know how your husband is feeling if hes getting weaker or stronger  but make sure to tell him that you love him repeatedly because thats very important with somebody who has cancer.  Well good luck and I wont forget to keep him on my prayer every night.

15 (edited by marions Thu, 10 Jul 2008 19:15:01)

Re: Any feedback are greatly appreciated.

Dear houstonian76,
I am so sorry to hear of your Dad

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Any feedback are greatly appreciated.

houstonian76,
I am so sorry to hear that your dad passed away.  I can only imagine your pain.  How fortunate that you had the opportunity to spend so much time with him before he passed.  I also have my father suffering with this disease and it scares me to death.  The pain is unbearable. 
May God bless you and your family and may you feel his loving comfort.

Re: Any feedback are greatly appreciated.

Dear Houstonian76,
     My sympathies on the passing of your beloved father. I am sure he really appreciated the extra time you took to be with him and take care of him.  He was blessed to have a loving family.  Prayers for you and your family during your grieving.
Karen

Wishing all God's blessings!

Re: Any feedback are greatly appreciated.

Dear Houstoian76,   My deepest sympathies for your lost.  May your beloved father rest in peace.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Any feedback are greatly appreciated.

Houstonian 76,

Our thoughts and prayers are with you.

Stacie

Re: Any feedback are greatly appreciated.

Houstonian76,

I am so sorry to hear about your father.  I hope the wonderful memories will comfort you.

Charlene Eloi
Daughter of David Cook