What Can I Expect To Happen To Me In The End Stage?

On 1/7/2008 8MJM8 wrote:

  Was diagnosed with biliary carcinoma with metastases to the liver & pancreas in Feb. 2007.  On chemo 14 days on & 7 days off since May 2007.  The cancer did not & does not show up in the CATT scans. The surgeons were surprised to find the cancer had spread when they opened me up for a Whipple Procedure.  Instead, they left all the cancer inside of me & closed me back up & did not do any surgery at all.  Have a metal stent with a solid stent inside of that one. Gets infected with sepsis every so often.  Just wondering what will the end be like?  Anyone willing to tell me the truth about your loved ones who had this dreaded disease & have passed on.   Believe in God, Jesus & Heaven & sometimes ask how much longer before I'm on that beautif

I don't know what is coming. I am wondering myself, for my husband is diagnosed with this same cancer in March 2007. Surgery was tried in May, but the liver was too much infected and both bile ducts blocked with cancer. He only got two stents, they couldnot remove anything.

The reason I answer to your message is to hopefully also give you a good message. When Peter went home from hospital, the prediction for his lifetime was a couple of weeks, maybe 2 months. This is 8 months ago and, because of the stents, the quality of his life is high. He has no pain, no itching and a lot of energy. Maybe this is due to the fact that he resumed "living" again. When the operationwound was healed, he went back to work and started playing squash again. We know that nastier times will come, but we celebrated Christmas and New Year and we never thought we would have those wonderful weeks.

So my message to you is, when you're feeling quite well, do the things you allways did. Live your life every day as if nothing is wrong. My Peter did and not only did this good things for his body, it also was much easier on all the loved ones around us. They come a little more often, we have wonderful weekends and, without exaggerating, do the things we like.

I hope that you do this too. Maybe it sounds weird, but we have had such wonderful months behind us, and maybe to come. Don't spoil what you can still have!

I will have you in my thoughts and wish you all the best.

Iris (the Netherlands).

 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...

On 1/7/2008 8MJM8 wrote:

  Was diagnosed with biliary carcinoma with metastases to the liver & pancreas in Feb. 2007.  On chemo 14 days on & 7 days off since May 2007.  The cancer did not & does not show up in the CATT scans. The surgeons were surprised to find the cancer had spread when they opened me up for a Whipple Procedure.  Instead, they left all the cancer inside of me & closed me back up & did not do any surgery at all.  Have a metal stent with a solid stent inside of that one. Gets infected with sepsis every so often.  Just wondering what will the end be like?  Anyone willing to tell me the truth about your loved ones who had this dreaded disease & have passed on.   Believe in God, Jesus & Heaven & sometimes ask how much longer before I'm on that beautiful shore!

Blessings to you. You are so brave to reach out to learn what is next.

Looks as though you have valuable experience for anyone diagnosed with Bile Duct Cancer. My sister was just diagnosed with this type of cancer.

I am seeking ways to aid her with comfort and best information through her walk with this disease. ty

One thing we know : Psalms 46

God is our refuge and our strength, a very present help in trouble.

God bless you 8MJM8, will add you to our prayers.

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

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

On 1/13/2008 Flower1 wrote:

 

On 1/7/2008 8MJM8 wrote:

  Was diagnosed with biliary carcinoma with metastases to the liver & pancreas in Feb. 2007.  On chemo 14 days on & 7 days off since May 2007.  The cancer did not & does not show up in the CATT scans. The surgeons were surprised to find the cancer had spread when they opened me up for a Whipple Procedure.  Instead, they left all the cancer inside of me & closed me back up & did not do any surgery at all.  Have a metal stent with a solid stent inside of that one. Gets infected with sepsis every so often.  Just wondering what will the end be like?  Anyone willing to tell me the truth about your loved ones who had this dreaded disease & have passed on.   Believe in God, Jesus & Heaven & sometimes ask how much longer before I'm on that beautif

I don't know what is coming. I am wondering myself, for my husband is diagnosed with this same cancer in March 2007. Surgery was tried in May, but the liver was too much infected and both bile ducts blocked with cancer. He only got two stents, they couldnot remove anything.

The reason I answer to your message is to hopefully also give you a good message. When Peter went home from hospital, the prediction for his lifetime was a couple of weeks, maybe 2 months. This is 8 months ago and, because of the stents, the quality of his life is high. He has no pain, no itching and a lot of energy. Maybe this is due to the fact that he resumed "living" again. When the operationwound was healed, he went back to work and started playing squash again. We know that nastier times will come, but we celebrated Christmas and New Year and we never thought we would have those wonderful weeks.

So my message to you is, when you're feeling quite well, do the things you allways did. Live your life every day as if nothing is wrong. My Peter did and not only did this good things for his body, it also was much easier on all the loved ones around us. They come a little more often, we have wonderful weekends and, without exaggerating, do the things we like.

I hope that you do this too. Maybe it sounds weird, but we have had such wonderful months behind us, and maybe to come. Don't spoil what you can still have!

I will have you in my thoughts and wish you all the best.

Iris (the Netherlands).

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...

  There are enzyme capsules (Creon 10 and others) that are taken with meals to help with digestion.  NO FAT or OILY foods!  This is a MUST!  Eating oily, fatty foods puts you into a gallbladder/pancreas attack about 2 hours after eating. That is a pain scale of 9 or 10 that lasts for 2 hours. Nothing can stop it once it starts. Read labels for how many grams of fat per serving & what a serving size is. I try to keep below 10 grams of fat in my entire meal. Also, eating smaller portions & chewing thoroughly helps. Grilled or roasted chicken, turkey & fish are your staples. If you have a stent, they get clogged every so often. You feel fine and then an hour later you start getting a stomach ache. You feel pain on a scale of 9-10, vomit, shiver with a fever of 103. The pain feels like gigantic hands are squeezing & twisting your insides and won't let go. The infection gets into your bloodstream & you go into septic shock....blood pressure drops to something like 60/45.  You have good days & bad days. The good far outnumber the bad. Chemo extends your days but it is not a pleasant situation.  I compare it to this: Go to a gas station, put the hose nozzle into your mouth, swallow a quart of gasoline.  Do this twice a day for 14 days in a row. Take a break for 7 days. Then start the cycle all over again. Do this for 8 or more months in a row. CATT scans are done repeatedly. They may or may not show the cancer or its progression.  A blood test (CA-119) is a tumor marker. The higher the number, the greater the cancer.  Mine started out at 77 and came down to 16. Then it gradually climbed up to 21. Last week it jumped from 21 to 150 and I am feeling more pain.  Pain pills work, but you feel woozy about an hour later.  Tell your mother you love her every time you talk to her.  Exertion makes the pain worse.  Try to let her do what she wants to do.  Ask her what would make what she wants to do easier for her. For me it was using the electric cart at the grocery store, getting a laundry cart on wheels so I won't have to carry laundry to the washer & dryer, having someone drop me off at the entrance to stores avoiding the long walk from the parking lot, etc. A great investment is a lounging chair for the living room.  Laying down eases the pain. Standing or sitting for a long time makes the pain worse. Sometimes the pain feels like wearing a bra that is two sizes too small.  Other times it feels like a muscle pull in the stomach and grabs your breath away. I still travel to see our children & grandchildren. Let your mother talk about her feelings. A great book to read is "When Your Doctor Has Bad News" by Al  B. Weir, MD.  Most books & people say trite simple things to cheer you up, but this book gets down to the heart of your disease and talks about things your family may not feel comfortable talking about. Cancer is a serious disease and when you have it, you want serious answers.  May the God who loves us give you wisdom & courage as you face the days ahead loving your mother.

 

 

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...

The doctor should tell you what stage.  Stage 4 is the worst & means it has spread to more than one other organ.  A Whipple Procedure is the surgery of choice. It is quite lengthy & only has a 4 year survival rate.  Chemo is another choice. It will extend your days but not get rid of the cancer.  Chemo is not pleasant. I compare it to this: Go to a gas station. Put the hose nozzle into your mouth. Swallow a quart of gasoline. Do this twice a day for 14 days in a row. Take a rest for 7 days. Then start the cycle all over again. Do this for 8 or more months.  There are Creon-10 or other enzyme capsules to help digest food. Absolutely no FATTY or OILY foods. Eating fatty, oily foods puts you into a gallbladder/pancreas attack about 2 hours after eating.  Pain scale of 9-10 and nothing can stop it once it starts. Feels like gigantic hands are squeezing & twisting your insides and won't let go. Exertion makes pain worse. Sitting or standing for any length of time makes the pain worse. A great investment is a lounging chair for the living room....it eases the pain. Pain pills work but you feel woozy about an hour later. Sometimes the pain feels like wearing a bra that is two sizes too small.  Sometimes it feels like a muscle spasm in your stomach & takes your breath. A great book to read is "When Your Doctor Has Bad News" by Al  B. Weir, MD. He tells it like it is & opens up conversation for family members with the cancer patient.   Let your mom do whatever she feels like doing. Using an electric cart at the grocery store gives me freedom. A bile duct stent is very useful in aiding digestion. They get clogged ever so often. You feel fine  & out of the blue you feel a stomache coming on. Then you get a pain scale or 9-10, vomit, shiver with a fever of 103 and go into septic shock with a bloood pressure of something like 60/45.  The good days far outweigh the bad days.  Enjoy the good days & take nothing for granted. Whatever she feels like doing, help her be able to do them. God loves you and now is the time trust that He knows what He is doing. Love is the greatest force on earth. Love your mother and enjoy each day you have with her.