What to expect in the last stages

klbk · June 2003

Hello. I do not know exactly where to begin this email or even if I am doing the right thing. My mother, who is 58, is in the final stages of primary liver cancer. On Wednesday 6/4/3, her physician indicated she has approximately 4-8 weeks to live. Last night, Saturday 6/7/3, she fell into a hepatatic (sp?) coma. Her physician and two friends of ours who are also physicians, indicated that she was not in any pain, so we could still keep her at home, but that she was probably very close to death. Accordingly, her priest came and adminstered last rites. In the middle of the night - at around 4:30 this morning, however, she awoke suddenly and asked for two Dannon yogurts and a large glass of Vernors. She had a third yogurt this morning around 9:00 a.m.

I guess my question, is, what is happening? None of the physicians seem to have an answer, and I am feeling really confused and scared. Last night I thought it was the end and stayed by her side for hours until I fell asleep. My Dad is also taking this very hard.

I have never posted a mesage before or been involved in any kind of chat room, so I am not sure how this works. But, if anyone could lend some guidance, I'd be very appreciative.

belle20904 · June 2003

Hi,

My Mom had liver cancer too. I know that this is a hard time for you and your family. When Mom was in the final stages of her disease she slept quite a bit -- maybe because of the disease, maybe because she was taking pain meds. Like your Mom, sometimes she felt like doing unexpected things like doing the dishes or sweeping the front porch. It was hard to know what each day would bring. I wish you and your Mom and family the best at this difficult time.

rjchiodi · January 2004

KLBK: My heart goes out to you. I suspect that your mother has died by now, and you will have discovered for yourself what happens in the end stages of liver cancer.

My wife has liver cancer also, but hers is metastatic, which originated from a colon tumor discovered just a few months ago.

We are seeking a radiological procedure, yttrium-90 infusion, at John's Hopkins, and hope to hold her cancer at bay. We both have no expectations in this regard, but are enjoying our lives one day at a time.

The reality of life is that we grow old and die. You, me, and the next guy are included in this scenario. There is only one way to deal with death, and that is to go through it.

Love, compassion, and joyful sympathy for you and your family in these times.

Ron

jeril · January 2004

Hello. I'm brand new to this website, and found your email just hanging out there. My husband has rectal cancer which metastisized to his liver and lungs. He was diagnosed at stage IV. That was three years ago. Since this past November, he;s been going downhill pretty fast. We have Hospice now, but none of the nurses really want to tell me what I can expect in these last days. He's sleeping alot, has lost an enormous amount of weight, sometimes he eats, sometimes not. I'm not sure if the sleeping is because of the meds, or the progression of the disease. I guess what I need to know is the plain and honest truth about what's going to happen. At least an idea. I'm his only caregiver, his parents have chosen to "remember him the way he was before he got so sick". Now I sound pretty nasty, don't I? Anyway, I feel all alone out here, and thought maybe you could help.

Dianaedes · February 2004

Hello,
I am new to this but lately felt the need to see if others out there feel just as confused as I do. My father was diagnosed with Liver and Lung cancer last September. Up until about 2 months ago, he was active, alittle less energetic, but still wanting to live. Now he doesn't eat, he has lost 8 to 10 pounds a week, and sleeps all the time. We have hospice now that comes once a week, and the nurse says that it has mestatesized to his brain. Can anyone give me some light on what I may be seeing in the next few weeks, or does he even have a few weeks left. I know only god knows the exact time he will take my dad, but i am hoping someone can give me alittle info. Thank you all....and God Bless anyone going through this. Diana

mjones2108 · June 2012

I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

agpnancy · June 2012

mjones2108 said:
I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

Thank you!
Hi. I wanted to thank you for sharing your story. My husband was diagnosed with Sage 4 liver cancer a little over a month ago. He won't talk much about what's going on in his mind, so your story has given me a lot of insight into trying to comprehend this.

He had advanced liver disease (cirhossis and Hep C) prior to being diagnosed with the cancer, which has taken over the entire right lobe of his liver, but has refused any treatment for the past few years. His ascites is really bad, he's having TAPs every couple of weeks to drain fluid from his abdomen, but it's building up more quickly all the time. His mental state is deteriorating very fast - he totally spaces out more often and for longer intervals daily it seems. He was put on Nexavar after the diagnosis, but they stopped that this week, because it was doing more harm than good. The doctors don't want to commit to a timeline for his life expectancy, especially since the liver function is failing as much from the cirhossis as the cancer. At the rate he's declining both physically and mentally, I don't expect more than a couple of months, at the most. He's also taking a lot of pain meds, which I know aren't helping with his mental state, but I want him to be as comfortable as possible.

My thoughts and prayers are with you through your struggle, and I applaud your bravery in trying to deal with this.

Keep in touch and let me know how you're doing.

Nancy

slg · June 2012

agpnancy said:
Thank you!
Hi. I wanted to thank you for sharing your story. My husband was diagnosed with Sage 4 liver cancer a little over a month ago. He won't talk much about what's going on in his mind, so your story has given me a lot of insight into trying to comprehend this.

He had advanced liver disease (cirhossis and Hep C) prior to being diagnosed with the cancer, which has taken over the entire right lobe of his liver, but has refused any treatment for the past few years. His ascites is really bad, he's having TAPs every couple of weeks to drain fluid from his abdomen, but it's building up more quickly all the time. His mental state is deteriorating very fast - he totally spaces out more often and for longer intervals daily it seems. He was put on Nexavar after the diagnosis, but they stopped that this week, because it was doing more harm than good. The doctors don't want to commit to a timeline for his life expectancy, especially since the liver function is failing as much from the cirhossis as the cancer. At the rate he's declining both physically and mentally, I don't expect more than a couple of months, at the most. He's also taking a lot of pain meds, which I know aren't helping with his mental state, but I want him to be as comfortable as possible.

My thoughts and prayers are with you through your struggle, and I applaud your bravery in trying to deal with this.

Keep in touch and let me know how you're doing.

Nancy

AgpNancy
I can only suggest you take advantage of every single minute and day that you have. Say all the things you want and make sure you know what his wishes are.
I speak from experience. My husband also had Hep C, Cirhossis and Cancer and was on Nexavar, had TACE and Y-90 and an RFA procedure before they told us there was nothing left for him.
That's when they called in Hospice... He started Hospice on Dec 23rd and was gone on January 14th..
I shope this helps and that's it's not too gloomy for you. I was lucky enough to have someone helping me with what to expect and gave me suggestions to help me after he was gone.
Best wishes.
Sue

agpnancy · June 2012

slg said:
AgpNancy
I can only suggest you take advantage of every single minute and day that you have. Say all the things you want and make sure you know what his wishes are.
I speak from experience. My husband also had Hep C, Cirhossis and Cancer and was on Nexavar, had TACE and Y-90 and an RFA procedure before they told us there was nothing left for him.
That's when they called in Hospice... He started Hospice on Dec 23rd and was gone on January 14th..
I shope this helps and that's it's not too gloomy for you. I was lucky enough to have someone helping me with what to expect and gave me suggestions to help me after he was gone.
Best wishes.
Sue

Thanks, Sue
We started with
Thanks, Sue

We started with hospice care today, and I'm very grateful and relieved to have all their help. I'm having a lot of trouble dealing with how fast he's deteriorating. At the beginning of last week, he was able to hold a conversation with occasional bouts of confusion. The past three days, he's only had a few moments of clarity. I know this is a blessing for him, since he's pretty much unaware of the pain, etc., but I'm having trouble being "ready" to start letting go just yet.

I do have a lot of support from hospice, friends, and family, and being able to vent my feelings in these groups is saving my sanity right now (I think.)

I'm so sorry for what you've been through, but appreciate the support. He's up wandering around again now, so I better go.

Thanks,
Nancy

slg · June 2012

agpnancy said:
Thanks, Sue
We started with
Thanks, Sue

We started with hospice care today, and I'm very grateful and relieved to have all their help. I'm having a lot of trouble dealing with how fast he's deteriorating. At the beginning of last week, he was able to hold a conversation with occasional bouts of confusion. The past three days, he's only had a few moments of clarity. I know this is a blessing for him, since he's pretty much unaware of the pain, etc., but I'm having trouble being "ready" to start letting go just yet.

I do have a lot of support from hospice, friends, and family, and being able to vent my feelings in these groups is saving my sanity right now (I think.)

I'm so sorry for what you've been through, but appreciate the support. He's up wandering around again now, so I better go.

Thanks,
Nancy

Hospice
I so know what you are going through.. I do feel for you. I had mixed feelings in the end. Part of me wanted him to go peacefully and part of me wanted him not to leave me. I was torn. But he was not the man I knew or could remember so as hard as it was it was a blessing. We can only hope they go peacefully, without pain and not alone. I am gratefull that I accomplished all and them some. And I hope you can too. My thoughts and support are with you. Keep in touch.

Kaitk15 · June 2012

agpnancy said:
Thank you!
Hi. I wanted to thank you for sharing your story. My husband was diagnosed with Sage 4 liver cancer a little over a month ago. He won't talk much about what's going on in his mind, so your story has given me a lot of insight into trying to comprehend this.

He had advanced liver disease (cirhossis and Hep C) prior to being diagnosed with the cancer, which has taken over the entire right lobe of his liver, but has refused any treatment for the past few years. His ascites is really bad, he's having TAPs every couple of weeks to drain fluid from his abdomen, but it's building up more quickly all the time. His mental state is deteriorating very fast - he totally spaces out more often and for longer intervals daily it seems. He was put on Nexavar after the diagnosis, but they stopped that this week, because it was doing more harm than good. The doctors don't want to commit to a timeline for his life expectancy, especially since the liver function is failing as much from the cirhossis as the cancer. At the rate he's declining both physically and mentally, I don't expect more than a couple of months, at the most. He's also taking a lot of pain meds, which I know aren't helping with his mental state, but I want him to be as comfortable as possible.

My thoughts and prayers are with you through your struggle, and I applaud your bravery in trying to deal with this.

Keep in touch and let me know how you're doing.

Nancy

Just like you wanted to
Just like you wanted to thank someone else, I wanted to thank you. It's hard when they don't talk about it. My dad also had chirrosis and now cancer. You sound very strong, and it's very motivating to me to be as strong. My dad was refused the chemo pill bc we don't have the money so he's medicationless as he declines. Your story on nexavar gives me hope that maybe my dad wouldn't have benefitted from it anyway. Thanks for sharing.

abackhou · July 2012

mjones2108 said:
I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

To M Jones: Best wishes
My very best wishes to you and I hope all goes well for you. You certainly have a good grasp of whats happening to you and what may eventuate. I too have secondary liver/lung cancer from the colon primary Stage IVB, DX Apr 2009. Now having problems with Ascites.
God bless you.

Andrew

offutt9 · August 2012

mjones2108 said:
I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

survival,faith,hope
Hi! I too was given only 3 months or less to live 9 years ago....my liver had several lesions,,,some very large...I had RFA done...Radio frequency ablation...done laproscopely (can't spell) no hospital stay and it shrunk the tumors..Please read my story called Miracle In Work....Don't give up...I'll be praying for you whatever you decide...But think about talking to your doctor about RFA,,,In Gods Love Barbara

kayelynn · August 2012

mjones2108 said:
I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

Thank you
Just wanted to thank you for sharing your life living with liver cancer. My brother was recently diagnosed and has several of the symptoms you have mentioned that confirm that he is in the final stages. He is jaundiced and has begun to have swelling in his feet ankles and lower legs. I don't know if this means that his liver is shutting down or if is something else. He is living in a skilled nursing facility where they are administering medications for pain. He has begun to complain about pain in his shoulder and stomach. This post has really helped me understand alot more about what he may be experiencing in the next couple of months. He has chosen not to have chemo. I'm so sorry to hear about your wife dying of ALS. I had a very dear friend die from that horrible disease in May, 2009. I don't know if you are a Christ follower or not, but I do know that my brother has accepted Christ as his personal savior and will be with Him in heaven when he dies. It comforts me to know that we will see one another again in heaven. I hope that you will find that kind of peace. I will pray for you.

momfriend · August 2012

mjones2108 said:
I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

mJones

Thank you For all your info. My son-in-law was diagnosed in Feb. He is taking the Nexavar and the liver tumors are "stable" The disease has spread to lymph and other organs.
Have you heard about the trial being offered at Sloan? We head there in a couple of weeks.
I wish you all the best. I think you are very brave and hope you will consider the Nexavar.
God Bless you and please stay in touch. momfriend

momfriend · August 2012

mjones2108 said:
I have reached stage iv-a in my liver cancer as it has metastisized to my lymphs, that is as of a little over 2 mos. ago. I have multiple tumors in my liver that are unresectable, they are too large, and they are also invading my portal vein causing a tumor thrombus. I found out this information approximately 8 mos. ago and was not expected to live this long, especially without treatment. Since I have decided on my own to not take the chemo, nexavar, which is the current standard, some doctors disagree, and yet some agree with my decision. Also, I am trying not to take pain medications unless absolutely necessary, though I have them available. I can assure you that without pain control, sometimes it is very painful, but the pain medications cause constipation which increases my abdominal pain, even with stool softeners. I have intense pain in my right shoulder and the right side of my neck, as well as my abdomen. I have tried some alternative therapies to try and alleviate some of my symptoms, but I don't feel that I am winning this war. I am slowing going downhill. The pain attacks ended after a few days at first, now they last longer and come more often. Due to the tumor thrombus, it is possible that I may die suddenly due to esophogeal bleeding from portal hypertension caused by the blockage in the portal vein. I may also die suddenly if a tumor ruptures, if the thrombus ruptures, or if the capsule of the liver ruptures from internal pressure. These first methods of death would be due to loss of blood and are preferable to the others as I would probably just get tired and go to sleep. If it is esophogeal varices, I could spit-up blood. The other causes of sudden death is if part of the clot breaks loose and goes to my heart, my brain, or my lung. These could cause a heart attack, a stroke, or an embolism. If I am hospitalized at the time one of these things occurs, it is possible that I may be kept alive a while longer, but it is doubtful that I would survive even in a hospital setting. These first sudden deaths are only seen in patients with the tumor thrombus (well, except for the capsule of the liver rupturing). The other method, due to liver failure, is much slower, and less pretty. So far, I have not been affected by the hepatic encephalopathy I have heard about. I wonder if that may be more of a symptom of the treatment with chemo as the chemo is hard on the liver. Anyway, when the liver fails in its functioning, it no longer cleans impurities out of the blood. This causes a brain fog, an inability to think clearly, confusion, and possibly, coma. So far I have no apparent signs of liver failure, which include jaundice (yellow skin, yellow eyes, pale stools, etc.), ascites (a build-up of fluids in the abdomen causing the abdomen to swell to very large proportions. The longer I survive without dying from the thrombus, the more likely it will be for me to go into full liver failure. My current prognosis is about 3 mos., but there is no way to tell for sure. It is, however, fatal in most cases and I am almost certain it will be in mine. The tumors in my liver are causing me to feel excessively full due to pressure on my other internal organs, and I am only able to eat small meals currently. Larger meals cause me a great deal of pain. The only symptom of liver failure I may have is generalized pain, the doctor calls it arthralgia/myalgia, joint and tissue pain. This is caused by the build-up of toxins in my blood. It is the normal function of the liver to cleanse these toxins from the body for eimination. Since the tumor is still growing, I am losing weight, I have lost approximately 65 lbs. I have been trying to eat healthy foods such as organic fruits and vegtables in order to keep myself as healthy as possible. I expect if I advance to the final stages in the next few months I will be in a lot more pain, my stomach will swell and my mind will no longer be clear. There is nothing modern medicine can offer but a short extension of my life, while being subjected to the side-effects of chemo. I will allow more pain medicines when I need them, but so far I have been able to stand it most of the time. When I can't, I take small amounts so I don't build-up a tolerance to the pain meds. That way it will work when I truly need it. Some people think I'm brave, some people think I'm stupid. However, I choose to go out on my own terms. I don't want to be a guinea pig or be recovering from surgical procedures the last few days of my life. Some days I feel better and can actually go out and do things, though these days are becoming fewer and farther between. I choose to die of cancer, not chemo or complications from surgery. That is my decision, and I will live or die with it. Sometimes I cry-out in pain, sometime I just cry. Yes, it really hurts bad, sometimes I am doubled-over and cannot get comfortable. But, I am still functioning and I will do this as long as I can. I lost my wife of twenty-six years to ALS almost two years ago. I didn't even know while I was taking care of her that this cancer was probably already growing inside me. The doctors I went to didn't find anything, one even referred me to a psychologist. I guess he was wrong. I wish anyone affected by this terrible disease the strength to deal with all the facets of it. God bless you. m.jones

mJones

Thank you For all your info. My son-in-law was diagnosed in Feb. He is taking the Nexavar and the liver tumors are "stable" The disease has spread to lymph and other organs.
Have you heard about the trial being offered at Sloan? We head there in a couple of weeks.
I wish you all the best. I think you are very brave and hope you will consider the Nexavar.
God Bless you and please stay in touch. momfriend.

march00 · September 2012

momfriend said:
mJones

Thank you For all your info. My son-in-law was diagnosed in Feb. He is taking the Nexavar and the liver tumors are "stable" The disease has spread to lymph and other organs.
Have you heard about the trial being offered at Sloan? We head there in a couple of weeks.
I wish you all the best. I think you are very brave and hope you will consider the Nexavar.
God Bless you and please stay in touch. momfriend

trials
Hi, do u happen to know the name of the trials at Sloan
Thanks
Nick

nmarchic@twcny.rr.com

thesunlady · September 2012

Liver Cancer
I was diagnoised in 2006 with liver cancer. I did the same thing as ur mom. Drs. were amazed with no explanation & had already told family I would not make it 24 hrs. but I woke up the next morning ready to eat! They said I need Liver transplant to survive, went for testing & prayed so hard for The Lord to let me know if it was right decission he let me no it was not after they made 3 bad mistakes I then spent alot of time in & out of hosptals, hospice & back to hospital. I had a chance to go to Dallas Methodist liver oncology unit for transplant! Upon arrival I had 3 tumors on liver they started me on chemo (Naxavar)& did 2 chemo implants into my liver!! I got so sick after 6 mos. chemo MRI showed 9 lrg tumors only 10% of liver working said to get things in order might make it 30 days. My neighbor (2weeks later) ran into a lady who had cured herself of terminal lung cancer (alernatively)& she asked her if she could help me. The answer was YES & she did help me!! Learn what I had to do & those 9 tumors turned to 1- 2cm tumor in a month!! Needless to say I am still here with my liver & healthy as can be I also am 58!! DON'T GIVE UP HOPE!! MDs do not know everything!!

Dannielle · September 2012

thesunlady said:
Liver Cancer
I was diagnoised in 2006 with liver cancer. I did the same thing as ur mom. Drs. were amazed with no explanation & had already told family I would not make it 24 hrs. but I woke up the next morning ready to eat! They said I need Liver transplant to survive, went for testing & prayed so hard for The Lord to let me know if it was right decission he let me no it was not after they made 3 bad mistakes I then spent alot of time in & out of hosptals, hospice & back to hospital. I had a chance to go to Dallas Methodist liver oncology unit for transplant! Upon arrival I had 3 tumors on liver they started me on chemo (Naxavar)& did 2 chemo implants into my liver!! I got so sick after 6 mos. chemo MRI showed 9 lrg tumors only 10% of liver working said to get things in order might make it 30 days. My neighbor (2weeks later) ran into a lady who had cured herself of terminal lung cancer (alernatively)& she asked her if she could help me. The answer was YES & she did help me!! Learn what I had to do & those 9 tumors turned to 1- 2cm tumor in a month!! Needless to say I am still here with my liver & healthy as can be I also am 58!! DON'T GIVE UP HOPE!! MDs do not know everything!!

How did you do it? My dad
How did you do it? My dad has one tumor and a blocked portal vein and they are not giving much hope...

Dannielle · September 2012

thesunlady said:
Liver Cancer
I was diagnoised in 2006 with liver cancer. I did the same thing as ur mom. Drs. were amazed with no explanation & had already told family I would not make it 24 hrs. but I woke up the next morning ready to eat! They said I need Liver transplant to survive, went for testing & prayed so hard for The Lord to let me know if it was right decission he let me no it was not after they made 3 bad mistakes I then spent alot of time in & out of hosptals, hospice & back to hospital. I had a chance to go to Dallas Methodist liver oncology unit for transplant! Upon arrival I had 3 tumors on liver they started me on chemo (Naxavar)& did 2 chemo implants into my liver!! I got so sick after 6 mos. chemo MRI showed 9 lrg tumors only 10% of liver working said to get things in order might make it 30 days. My neighbor (2weeks later) ran into a lady who had cured herself of terminal lung cancer (alernatively)& she asked her if she could help me. The answer was YES & she did help me!! Learn what I had to do & those 9 tumors turned to 1- 2cm tumor in a month!! Needless to say I am still here with my liver & healthy as can be I also am 58!! DON'T GIVE UP HOPE!! MDs do not know everything!!

How did you do it? My dad
How did you do it? My dad has one tumor and a blocked portal vein and they are not giving much hope...

ronin100 · October 2012

Dannielle said:
How did you do it? My dad
How did you do it? My dad has one tumor and a blocked portal vein and they are not giving much hope...

New Diagnosis
I have just been told that I have HCC - liver tumor with cancer on top of HCV and cirrhosis. The tumor is primary and hasn't spread yet.

I've been give 8 months to live (maybe) or with transhepatic arterial chemoembolization using doxorubicin on the glass beads, up to 16 months. It doesn't sound good for me. I'm not eligible for any other treatment and don't know of any alternative protocols that would help me.

It's like everyone has their hand open to take m money and no proof of single cure. I have been relying on God and Jesus in prayer but I feel like the countdown has begun in earnest.

Doe anyone have any information to share like the sunlady in the pool avatar - that I can use to assist in taking to kill this dreaded tumor?

I've had HCV for 42 years and held it at bay with milk thistle and high lignan flax shell. My liver battery is good except that my platelets are low at 69 instead of around 150 (where I think they're supposed to be.

God bless you all and please if you have something to share with me, my email is porschegt@gmail.com

Chuck

What to expect in the last stages

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