Symptoms of End of Life?

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RE: Symptoms of End of Life?

by irish_lady0309 on Sun Oct 31, 2010 10:01 AM

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On Dec 05, 2005 12:00 AM ia_Girl wrote:

Hello - I've read several of the message strings & it's not clear to me if there are any consistent sypmptoms that help one recognize the end is near with pc patients? My dad, age 63, was diagnosed on 11/2/04. He went through several months of Gemcitobin, but developed an "allergy" to the chemo. About the same time, they installed stints in his bile ducts. A few days after coming home from the hospital, he was looking jaundiced again. A return to the hospital showed the stint had a kink in it & it had to be replaced. He took a 2 week low dose of Xeloda in the beginning of November. The cancer markers are the same as before. He expressed a desire to start a second dose of the Xeloda, but his appetite declined in the past couple weeks. He was finally admitted to the hospital with extreme confusion, nausea & vomiting and constipation. He was impacted and had a severe electrolyte imbalance. After a few days in the hospital and a potassium drip, he was walking again & making sense. Now after 3 days at home, he's confused again and not eating. He says it hurts his stomach to drink. How do you know when it's time to bring hospice in? We've had so many close calls in the past year, stroke, pneumonia, falls on ice & in the bathtub. The Drs. were pushing hospice in August after his stints were installed and the Gemcitobin "allergy" developed. After an interview with Hospice nurses, they decided it wasn't time yet. Dad's managed to bounce back so many times, but he's down to 150 lbs now. Like so many of you who've written, I live 10 hours away from my folks. I feel so helpless. We've been blessed with so many good times this year, despite Dad's diagnosis. It's so hard to know if I need to go or not. I'd appreciate any perspective on what the end looks like. Thanks, Lois

my mother was diagnosed with stage IV pancreatic cancer on July 30, 2010 and she passed away this morning (10/30/10).  She was not a candidate for surgery and she was taking chemo treaments (she had 4), the doctor told us that the cancer was getting better that the turmors shrunk by half after the second treatment, we thought she would one of the few that would beat it.  She was feeling pretty good till about a week ago, she ran a fever we took her to the dr he put her on antibotics and gave her some fluids, she saw him again in two days and it appeared she was doing better, the last three days she very bad nausea and diareha but she had that after chemo treatments. She had been talking to us but told us she was very tired so we let her sleep she did not eat much (but she took her meds)the last few days but this was normal after her treament, she became unresponsive and when she was in pain and lost control of her abilities and we cleaned her up and took her to the hosipital but she did not make it there, they tried to revive her but couldn't.  It was a shock to us as well as to the dr, he told my father that she was really responding to the threapy and that she may have hemoraged and we did not know it. Please when you get your diagnose spend as much time as possible talking and say things you want to say because you never know when they will slip away from you. My heart is breaking as I write this, my mother was 68 and my best friend, she loved life and her family and would do anything to help anybody. I pray they will find a cure so others will not suffer like we have.

RE: Symptoms of End of Life?

by The_Wife on Sun Oct 31, 2010 05:47 PM

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I'm so sorry about your mother. She sounds like a good mother and a good person.

PC is a vicious disease that wreaks havoc on the body's systems. Many PC patients don't die from the tumors but from not eating. This weakens them so much and can lead to organ failure or an inability to fight infection. I'm sure you did the best you could for your mother; you did nothing wrong. It's just a vile disease. My sympathies to you and your father.

RE: Symptoms of End of Life?

by rlstopgun on Wed Nov 03, 2010 11:56 PM

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My husband was diagnosed with pancreatic cancer in December 2009 after a couple of months of terrible stomach pain and misdiagnosis. He had to have an emergency procedure to insert an external drainage tube from his bile duct, or he would be dead soon. At the time, he was inoperable due to the location of the tumor (5cm on head of pancreas), but the doctors felt he could take chemo and radiation to possibly shrink the tumor and make him a candidate for surgery. He took chemo (5-FU) continuous through a pump for 5 days a week and had 28 radiation treatments, also 5 days a week. His tumor shrank, but the surgeon was still hesitant on performing the whipple due to the location of the tumor in relation to the celiac artery, the portal vein, and the superior mesenteric artery and vein. Even before the treatments, he was very sick and had problems with naseau and vomitting, but that continued. My husband basically told the surgeon that if she did not try to remove the tumor, he was a dead man anyway, and if she at least tried, he might have a chance. She reluctanly agreed, but advised us on a number of scenarios that would cause her to halt the operation immediately - metastasis, actual encasement of arteries and veins, etc. In the early morning hours of April 26, 2010, my husband went into the operating room at Duke University, with Dr. Rebekah White as the head surgeon. I cannot say enough about the woman. She was absolutely wonderful before the surgery, during and after. After 10 hours on the operating table, Dr. White came out and explained that the whipple was successful in that the tumor had been removed. However, the area close to the arteries and veins had some abnormalities that she could not remove (the tumor was abutting the arteries and veins). She did feel that more chemo could prolong his life, especially since he responded so well initially to the chemo. After 10 days in the hospital, my husband was released and recovered well from the whipple, but still had the naseau and vomitting. We were both very happy he was rid of the external drainage bag, which Dr. White removed during surgery and placed an internal stent. At the end of May 2010, he began his chemo treatments, this time with gemzar. He was to have four cycles (two weeks on, one week off). He did not tolerate the gemzar well at all. He had flu like symptoms, fever, etc. His CA19-9 levels slowly started rising, but I tried to keep an open mind, since many things could cause that. When we went for one of his treatments around the beginning of August 2010, the doctor (oncologist) decided to halt the treatments and have a scan. My husband's bloodwork was very out of range and he was very swelled in his stomach, ankles and legs. The doctor (oncologist) said what was the point in doing the treatments if he wasn't getting any benefit from them. My husband was scheduled for a scan two days later and scheduled to see the doctor the following week. When we went for the scan, the radiologist didn't like what he saw and had the doctor (oncologist) take a look. He was then sent to another area of the hospital to have fluid (ascites) drained from his stomach ... 3.5 liters worth! I knew from some of the research I had done that this was a very bad sign. When we went for the follow-up with the oncologist, our worst fears came to a head. The chemo was not working ... the cancer was spreading ... there wasn't anything else that could be done, at least nothing acceptable to my husband. He had been through so much that he had decided long ago if this treatment didn't work, he wasn't trying anything else. We were told that we could call for anything we needed, and the doctor would order hospice when we were ready, but not to wait too long. Hospice came to our home during the last week of August 2010 to begin the paperwork and get the ball rolling. Talk about a very empty, sick feeling in your stomach! My husband and I decided we would enjoy what time we had left and make the most of each and every day. That is what we have done, but in just the last few weeks, he has taken a sharp decline. He now sleeps most all the time; he eats and drinks very little; when he is awake, he is confused quiet often; he has problems swallowing his meds; he does get out of bed, but it takes all the energy he has to go from one room to another and can hardley lift his legs to even walk; he is skin and bones (220 lbs at diagnosis to 100 lbs); he has problems with incontinence and has decreasing urine output. I really don't know how much more he can go down. I cannot stand the thought of burying my soulmate, but I also cannot stand to see him suffer anymore. He has not felt good or at himself since his diagnosis, even with the treatments and surgery. Before the cancer, he was so full of life, love and laughter. He was and still is the strongest man I have ever known. Hospice is wonderful, but they tell me there is no way to know when his time will be. I see the signs all around, but I have seen them for over a month or so. He tells me he is tired and worn out. I constantly tell him how much I love him and how much I will miss him, but that I will be okay, and I will join him in Heaven when God is ready for me, but it's not my time yet. People used to tell him that they were praying for him to be healed, and he began telling them it was not meant for him to be healed in this life. God was calling him home, and he was ready to go and would be healed when he entered Heaven's door. I know this is long, but I wanted to share our story. I pray for anyone that has ever been affected with this awful disease ... patients, caregivers, family and friends. It takes its toil on everyone involved.

RE: Symptoms of End of Life?

by callista on Thu Nov 04, 2010 12:15 AM

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I am so sorry to hear what you are going though with your husband. My father is not quite as weak as your husband but certainly exhibits alot of the same symptoms you speak of. Its so sad to see them suffer through the treatments, disease and the final days... Peace be with you and him ...

RE: Symptoms of End of Life?

by Yaziza on Thu Nov 04, 2010 03:02 AM

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ristopgun

Thank You for sharing your story filled with Love.

Yaziza

RE: Symptoms of End of Life?

by Bumbles on Thu Nov 04, 2010 03:09 AM

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Mom just passed 10/8 of this terrible disease. I will comment as I took care of her 24/7 and she exhibited the signs of death from this disease textbook. She was on a feeding tube, and the food stopped going in as her body rejected it or did not need as much of it. Then, she became dehydrated and could not retain potassium so she became bedbound. The nervous system shuts down to protect itself from pain and to prepare for death. She stopped being able to hold anything or wipe phlegm or anything. She was kind of paralyzed except for her eyes, but with intermitten use of body. Then, she began emptying her bowels and bladder profusely. We cleaner her up a final time, and she began having a pneumatic gurgling sound known as the death rattle. The lasted for 8 hours textbook. We repositioned her upright and her breathing was quieter and shallow. Then, they grew further apart and she took ehr last breath inmy arms and was pronounced dead. The week before her death she became inward and slept a lot. She often murmured in her sleep and was rarely 'with us" and when she was she was reflective and quiet. She was preparing to leave this world. I hope this helps some.

RE: Symptoms of End of Life?

by jimmyreturns on Thu Nov 04, 2010 03:13 PM

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On Oct 31, 2010 5:47 PM The_Wife wrote:

I'm so sorry about your mother. She sounds like a good mother and a good person.

PC is a vicious disease that wreaks havoc on the body's systems. Many PC patients don't die from the tumors but from not eating. This weakens them so much and can lead to organ failure or an inability to fight infection. I'm sure you did the best you could for your mother; you did nothing wrong. It's just a vile disease. My sympathies to you and your father.

It's so heartbreaking and sad to read all the stories here posted her the cargivers. I swollowed my tears and my deepest sympsies to all of you.

I agree with "the wife". At the end of the disease, the organ started to shut down, especially liver, kidney. Patient will die from that. Eating and keeping a good immunity are the key to fight the diseas and go throug the Chemo treatment.

My wife has PC stage III. She was diagnosed at 8/17. She was misdiagnosed on March (JHkH looked at the images done back to March and comfirm that.) She would be a candidate for surgey if it's back on March, but now the tumor encased with several major arteris and she is not operable.

She started Chemo (Gemzar) 3 weeks on 1 week off for 3 or 4 cycles. Now she just completed her 3rd cycels. She developed jaundice again from the 2nd Cycle. I noticed her face and eyes getting yellower again. Her doc ordered blood work and her bilirubin was 6.9. She developed a fever right after the last round Chemo at the 2nd round. I measured her temp at home (102.7 F), so I checked the website which said there are 2 possiblities causing the fever - one is from the side effect of the Gemzar (from Gemzar website), the other one is from Bile Duct obstruction (from JHkH website). So I called the hospital righ away and I drove her back to the ER that night. The doc did a CT and confirmed the her bile duct was obstructed again. She had the plastic stent about 1 month ago and was told it could last up to 3 moths, but we didn't know it got bad so quickly. So they replaced it with a metal stent this time. Wife was in the ER with antibiotic IV for 3 days and then released. I collected all her bloodwork and tracked them. Her billirumin, AST, ALT was the big concern to me and they were always elavated due to her liver function. At that time, whatever she took, either her medicines or food, she would diarrahed out instently.  I think the metal stent worked very well and did get her life back again. I also tried AHCC, Coriolus, Selenium, Silymarin, Alpa-Lipoic Acid, V-B complex and V-D3, etc for my wife since from the week off chemo. After the 3rd cycle of the Chemo,  her blood work showed her biliirubin was dropped to 1.4, AST and ALT dropped to 40. But her WBC, RBC and platelet were very low now. The doc are ording the human growth factor to boost her blood cell count to have her go thru the 4th cycle of the Chemo.

Again, having her eat often is the main goal to keep her strong enough. He doc tried all kinds of prescription to stimulate her appetite, nothing worked until one day I asked her doc to prescribe the medicinal Marijuana. It's amazing and instently helped her appetite - she was hungry and ask for foods 30 mins after took one small ball. She wanted to eat KFC, i got it for her, she wanted to have hamgerger, I will get it for her, even I know they are unhealthy, but felt lucky enough she just wanted to eat. She has lost 50 Lbs since from the early this year, but last few weeks she kept a relavent stable weight.

I don't know when that day will come to my wife, I really don't want to know, cause it sacres me when i think of it and I can't face it and dont' want to talk about it. I am strong guy in front of every one including my wife, but i am very weak to myself. I said to people I know "She is doing great, she will beat the shit and she will survive", but I cried very much after behind them.

I hate the disease, it destryed so many loved one lives. I didn't know this until my wife got it. I wish we can find a cure one day. We have to, for those sufferring and those will be diagnosed. 

Love, Dream, Hope and Believe!

RE: Pancreatic Cancer

by ninshay on Sat Jun 30, 2012 02:09 AM

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my husband was dignosed with esophageal cancer oct 2011,went thru all the chemo and radiation and was to have to surgery but while in the operating room the dr did one more ultrasound that required a biopsy. they found the cancer on the outside of stomach so no surgery as had spread and was stage 4.this was in April.We are under hospice care at home for now as condition not bad enough yet for hospice in patient.My question is what symptons should I be looking for when time gets near the end? He has started vomiting, very weak,no appettite.

RE: Symptoms of End of Life?

by luvmysister on Wed Jul 11, 2012 05:04 AM

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I too will sing the praises of hospice.  My sister was in a lovely suite that was so quiet and peaceful in comparison to the hospital.  For two days she was able to recognize and speak a little to us.  The last three days were spent watching her body shut down.  I don't know if she would have been able to get the meds at home like she did there. She started with Oxyfast liquid, and Dialaudid (Spelling?).  Then she had a morphine pump that the nurses could boost if necessary.   The nurses were wonderful to the whole family.  They explained everything as they did it.  Even when my sister was nonresponsive, they would still tell her they were going to raise or lower the bed to check her port, catheter, etc.  When I arrived the last day the nurse said to me, "You know your sister is nonresponsive.  There is not even a slight lifting of the eyes."  Later that day she told us there was no output from the catheter.  She was gently preparing us for what was to come in the next 12 hours. 

I know that most people say that they want to die at home, but after my experience with hospice I would say look around at what your options may be before you have need of them.

My sisters symptoms prior to hospice were she was sleeping a great deal of the time and had no desire to see or talk to anyone on the phone.  Even her beloved daughters.  From the time she quit talking it was just short of 3 full days for her body to shut down completely.  My mother was the same way in 2009. 

My prayers will be with you at this difficult time.  Take advantage of all the resources you can because it is an exhausting journey.

RE: Symptoms of End of Life?

by Tony11 on Wed Jul 11, 2012 01:21 PM

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My dad passed away 3 months ago from Pancreatic cancer. He was only 52 years old. We knew the end was really near when he was always sleeping, didn't eat or drink anything, very delusional and turning yellow.He also got angry towards the end and always fell when he got up from the couch.

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