45,5Month After Op And Going Strong

Hi,

Last Oct07 had op they reconstructed my Bile Duct,removed a vain from my neck and used it to replace my main Liver blood supply vain.They were able to leave a good margin to my Liver that I don't need Chemo of any kind. Im back up and around and even have time to go swimming. I still get some pain but it is only 5months. Ive got 3 kids,(7,14,16) and the most gorgeous WIFE (carer) in the world. All I pray for is to see my kids grow up and have an adult life. Time will tell,I read a lot of people are not lasting more than 2 years. Please tell me there is a God and there are people living longer. I'm due my 1st check up next month (April) and all the Drs say i'm doing well and even looking better than they expected.

I would love to here from anybody just to chat. MickieB 

Hi Mikie,

This is Iris from the Netherlands. As you can read on this site (my messages under the name Flower1), my wonderful husband has this kind of cancer and he could not be operated.

I am very glad that for you chances are high. Keep fighting, eat well, keep your spirits up and enjoy every day you have. That way you will last much longer, I am sure of that (looking at my Peter).

Wish you and your family all the luck and please, keep us informed.

Kind regards, iris.

Hi Iris,

My name is Michael and wife Julie thank you for you kind words. Any one who has gone or going through this has my support no matter how far away they are.They (Doctors) say the young have the best chance, but who is to say what is deemed young. It shouldn't matter the age, because life is a life. and we all love some ones life.

I promise to keep you updated, my heart gose out to you and Peter. Take Care of you Michael x

Hi

My fiance was diagnosed with cc in Oct. 06 at 29 years old.  He had surgery in Jan. 07 and even with all of the complications he has had, he is currently doing well.  It has now been 18 months since diagnosis and there are no signs of cancer.  We pray the it does not return.  After seeing everything he has been through and survived even the doctor says he is a miracle.  Keep your faith strong. 

 Don't just pray for a miracle, expect one

Christina

Hiya Christina lovely to hear your great news about how well your fiance doing. This is Julie I'm MikieB wife. I thought my hubby was very young to have this illness. I was wondering how you coping it really hard watching loved ones go through this and not being able to do anything. We going for the Catscan today the big 6 month check up we are praying it all clear. You,ve given me hope as hard wondering how long we have together as you just don't know. Anyway keep me updated and wish your fiance best of luck always and you.

Julie

On 4/2/2008 Christina23 wrote:

Hi

My fiance was diagnosed with cc in Oct. 06 at 29 years old.  He had surgery in Jan. 07 and even with all of the complications he has had, he is currently doing well.  It has now been 18 months since diagnosis and there are no signs of cancer.  We pray the it does not return.  After seeing everything he has been through and survived even the doctor says he is a miracle.  Keep your faith strong. 

 Don't just pray for a miracle, expect one

Christina

Hi Christina,

Thanks for your kind words, it means a lot to me to hear of some one who has had this rare cancer, and is well on to a full recovery. I have a message spot on the Macmillan cancer message board. I would be very pleased if you get a chance to read it. And maybe add you views since at present, you and your loved one are the longest survivors I found following the operation to date. Like you said he upstairs can only answer the call.

Take care, to you both x Michael

PS I'm under the heading Mickieb Bile Duct Cancer.

oh no no no! 

 We are by far the longest survivors.  There is a guy named Jeff who has been living with this cancer for 8 years.  Truly a miracle.  Not that the cancer is gone, but he has been fighting it and so far winning his battle.  You can look him up and others on Cholangiocarcinoma.org.  This is a great site and the response you get from the people is triple what you receive on this site.

How I am dealing...... Wow!  That is a tough questions.  It has been really hard.  When first diagnosed, the hospital we were at deemed him inoperable.  They said that the 8.5 tumor was too big and in a very difficult place to remove.  This was the worst part.  Feeling almost helpless.  I put our lives in God's hands and just prayed everyday for a Dr. that would at least take a chance.  We did find a great Dr. which I am soooo thankful for.  He removed over 70% of the liver in what turned out to be a 16 hour surgery.  My fiance had many complcations while in the hospital including muscle tissue infections, blood infections, fluid build up in the lungs, a vessel that burst in his stomach and starting vomiting up blood but you know what HE IS HERE! With me everyday and how can I say I am dealing.  Pretty well I guess.  The hardest part for me is looking on the positive and being thankful.  Pushing the negative feelings away.  Hearing another ones story and being scared of recurrence.  I try to tell our story and help as much as possible.  I wished someone would have been around for me to life my spirits when first diagnosed and deemed inoperable. 

Dealing to me has just been never giving up.  Take the negative and searching for positive.  Looking to God for strength and praying for a good life.  Not letting fear get in the way of my happiness.  Thanking God for what he has given me and praying that it will stay.  Being strong for myself before being strong for him.  This is important.  I tried being strong for him and it broke me down.  I felt as if "what about what I need" sorry for the long msg. If you would like to know more feel free to contact me. 

Don't just pray for a miracle, expect one.

Christina

Hi there,

How are you doing?

 My mom 78 yrs old, great health otherwise, just got the diagnosis.  Was the main vein replaced the portal vein?  They say for my mom that the 3.2 cm mass/tumor is too close to this vein for surgery.  Did you hear this too?

I haver read surgery and resection are the best cures for this cancer. 

Any helpful news/info appreciated!

Thanks,

Carolyn

Hi ya Carolyn.

Nice to meet you. Yes I was able to have the main vain replaced and the reconstruction went fine. I have just had my main check up and I have been told I'm doing very well. All clear as far as they are concerned,my markers are down to 66 (normal is about 54) so I'm doing well on that front. They wont say I'm all clear yet as it still is only 7 months. But its 7 months on I didn't have pre op. With the fact that I dont have to have Chemo, thats a big plus, and thates down to the fact that they did the reconstruction. So I can say, YES the reconstruction,and vain replacement seem to be the right way forward. But thats just my view.

Again very nice to talk to you.Talk to me any time.

Take care Michael xx

Hi there...

what a great outcome for you! Where was this done, and how old were you? My mom has Klatzins Type 4 I think they call it. we are in Northern CA..... 

thank you so much...this is encouraging...

God bless you and your family..

Carolyn