What can I expect to happen to me in the end stage?

On 1/16/2008 eaglessoar wrote:

 My sister,BP, has just been diagnosed with Bile Duct Cancer and I am trying to learn as much about this disease as I can to help her through this trial she must pass.

I want to make sure the diagnosis is accurate, best treatments, ways to relieve symptoms.

What to expect, even though I don't really want to know.

How do we know what stage my sister is in? 

 Is there a possible genetic link and how can our children be tested for this , in order to catch it in its earliest stage possible.

Thank you, and Blessings to your mom.

 

 

 

On 1/11/2008 JamiefromGA wrote:

I surely don't have an answer for you, but will be remembering you in my prayers.  My mother was just diagnosed as well.  She is currently hospitalized with an infection (doing much better today) after stents were inserted earlier this week.  We are praying for a miracle, believing that God still performs them.  However, we are accepting the awful prognosis (4-6 months) and asking for good quality of life for the remaining time.  I will pray the same for you.  God Bless...

Hi,

My husband was diagnosed with the same Cancer, Bile Duct  in June 2007 and had a Whipple Procedure done July 2007.

They took part of his stomach.  40% of his pancreas, all his gall bladder and 31 lymph nodes.  The cancer was in the Bile Duct, tumor on top of the pancreas  and 2 lymph nodes.  He did fantastic l from the surgery. 

 In Sept. he started with chemo. (Gemmzar)  1X week for 3 weeks on and one week off for 2 cyces.  Had a 2 wek break and then Radiation with a chemo. bag of Five FU for 7 weeks, every day.  Two weeks before Christmas he finsihed up with both these things.  Three weeks ago he started back up with Gemzar, 1X week for 3 weeks on one week off.  He is now on the week off.  He has one more cycle og Gemzar and they say that will be the last of it.  YYYEEEAAAHH.

His levels have been great.  The side effects with Gemzar have been not bad, very, very tired, nausis at times, light sensitive at night. 

The Radiation/Five FU side effects have been mouth sores, very nausis at times, tired, night sweats and his incision has been red and weeping which it still is.  But it has not gotten infected inside.  He is now on Keflex, antibiotic.

 Because part of my husbands stomach has been removed he is nausis more.  It is difficult for him to eat small more frequent meals, which they recommend.

He should be done with everything in March 2008, YYYEEEAAAHHH. 

I will pray for your Mom.  I know what you are going through.  It is truely great that we can e-mail.

 Take Care.

 

 

On 1/21/2008 TnFishersWife wrote:

I wish I still had your positive attitude. My husband, only 45 years old past away Monday Jan. 14th from bile duct cancer. We fought long and hard to beat this disease or to at least buy us more time together. He was diagnoised March 2007. We spent many days in & out of the hospital. He could not have surgery due to the spread of the cancer to the lining of his body cavity. He had 4 months of chemo when an absess was discovered and the chemo was stopped at the beginning of Sept.. His health declined rapidly and he spent almost the entire month of Oct in the hospital. The doctors at the major University hospital refused to do any test that we requested - my husband started vomitting and couldn't even keep water down. However, they kept telling us that the chemo was working and the tumor had not grown - which we found to be untrue. We decided to seek the help of our original doctors at a community hospital. They did the test we requested and found that the cancer had blocked his stomach from his intestines. A PEG tube was put in his stomach to drain it externally and stop the vomitting. We went home with hospice at the beginning of Nov. I cared for my husband 24/7. He chose to have IV nutrition which gave us more time. I spent almost every waking moment praying, begging and pleading with God for a miricale from the time he was diagnosed. Now I spend every moment asking "why?". I am lost without him.

But you wanted to know what the end would be like. On Friday Jan 4th, he became disoriented & confused during the middle of the night. During the day he would be better - not as confused. The same thing happened on Saturday. Sunday night when he became confused, disoriented, agitated and constantly picking at everything: clothes, IV's and anything around him...it just continued into Monday. He remained in this state until Thursday  the 10th. During the day he was with us. He knew people and was able to acknowledge them. By 5 pm on Thursday he was back in his confused state. Thursday was our calm before the storm. He continued to fight up to the end. I know he knew family and friends were around but he was unable to communicate with them. I could tell by his body language that he was not giving up. He passed away between 12:30 and 1:00 am on Monday the 14th. He waited until I couldn't stay awake any longer. I typically stayed up until 1am, but I was so tired because I had not slept in days. So he waited and slipped away when I closed my eyes. I hope I have answered your questions. I'm glad that you seem to be ready to die. I hope those around you are ready too. My Love did not want to die, he wanted to live and grow old with me.

Feb. 24, 2008 is our one year wedding anniversary.

Good luck - TnFisher's Wife

So very, very sorry about your husband.

As I read these stories one after the other, it is heart felt.  I am so HAPPY that we have this message board. 

My husband was diagnosed with Bile Duct cancer, June 2007.  We are there for each other.

Nvike,

My heart goes out to you and your husband. I don't know what to say to you, except I hope ya'll are able to have more time together - to kiss, hug, hold each other and tell each other how much you love one an other. How long have ya'll been married? Any loss of a loved one is horrible, but I don't know what's worse... being newlyweds or married for 50+ years. Jim and I were just starting out life together. We had plans to build a home, go on a honeymoon and just to love and enjoy each other for many years to come. Friends tell me to do all the things we had talked about in his memory. But right now all I want to do is crawl into a hole and never come out. I have trouble going out in public - seeing happy people since I'm hurting so badly. I can't even go to a store that plays piped in music...too many love songs and I just start to cry and have to leave. I'm so very hurt and angry right now. I've asked God to forgive me for my anger,to give me strenght and to please help my heart to heal. I've been told life gets easier with time, but right now I don't see how. While Jim was alive I felt like there was hope, but now I feel like there's no hope. I always believed God was caring, loving and compassionate...so it makes it more difficult for me to understand why He would call Jim home at this time. A dear friend of ours told me that he can't figure out what could have been so important in Heaven for God to need Jim. What could be more important than leaving him here on Earth to protect and love me and my daughter (9 years old)?? So many unanswered questions. Yes, I know that all our questions will be answered in the end, but that doesn't give me comfort right now - it doesn't help me understand why bad things happen to good people.

I do hope that you and your husband have a better survival % then Jim and I had. Where is your husband in his treatment? Did he have surgery and was it successful?

Try to stay strong.

TnFisher's Wife

Hi,

I don't have words to comfort you...my mom was with me 2 weeks ago but not any more.She had Bile Duct C.

She was given 6-8 months, and she fought bravely for 8 months.

The loss  is irreparable but  my only consolation is the fact, that she did not suffer the way such patients suffer. She was active, shopping, enjoying life with her family to the fullest. She prayed with all of us. I was hoping for a miracle,but I guess....our days on earth are all predestined. 

God did listen to our prayers and caused her no sufferings at all.. till the end she had a good appetite and a zest for life. The pain was under control with a  pain killer once in 24 hours. She didn't have to take morphine(which we were dreading). She had cardiac failure and none of the wasting syndromes of the disease.

My only advise to you is to take care of yourself, do yoga, eat a good diet and stay positive and happy and PRAY a lot. God does listen in his own way. Prolonging life  is up to him, but lessening the pain and suffering is what our prayers can. I am sure there won't be any dreaded end stage for you, stay positive and keep your faith. God Bless.