Need help, dad has stage IV cc with extensive liver mets

[Guest guest]

Hi everyone,

My dad (68 years old, colonoscopy 2 years ago removed benign polyp,

father died of colon cancer at age 57) was diagnosed with stage IV

to the liver and had surgery to remove the polyp on 5/16/04. The

took out 14.2 cm including part of the ileum and cecum. Liver is

involved, both lobes, not resectable according to surgeon. They put

in a port-a-cath on 5/20 and released him from the hospital on

5/21. Surgeon dicharged him and said to eat regular food and sent

him home w/ Tylenol w/ codeine for pain! He vomited on 5/22 and had

no appetite, didn't really eat after that and was readmitted

yesterday 5/25 with severe dehydration and jaundice. I just flew in

from the west coast last night and spent today getting a hold of all

his medical records and talking to various people at the hospital.

They had him on a full liquid diet but he still threw up (pudding?

how is pudding liquid?) and mostly mucous after the pudding.

Finally started the TPN IV at 6 pm, gave him morphine for pain and

Reglan for nausea. I don't know how he will be able to get any

treatment when he is so weak. I have made an appt at Sloan

Kettering for June 14 to see specialist for cc with liver mets. I

am worried he will not be well enough (they wanted to wait 4 weeks

post surgery for appt and when I made it, he was about to be

discharged and I thought he would be on his way to recovery). I

want to get him out of that hospital and somewhere else. There is a

lot more info but I will start with this, does anyone have advice or

suggestions, I have only been home 24 hours and feeling like I

cannot do this alone. At least I did get my hands on all his

records, mainly because the medical records person was so great and

I also went to Patient Relations.

Sorry this is so all over the place, tried to get in the pertinent

info for now.

Thanks for any help,

Ellen

[Guest guest]

Ellen- I am so sorry to hear about the rough time your Dad is having.

Both of you must be so scared and exhausted. I am happy to hear

that you have an appointment at Sloan Kettring. They are one of the

largest of the comprehensive cancer centers, and have lots of

resourses available. Although I have not been there, it was one of

the places suggested that I consider going for treatment of my

rectal carcinoma.

I am suprised to hear that they released your dad from the hospital

without knowing if he could eat. They did not let me escape until I

could eat 1200 calories of solid food. (By the way, I checked the

list they gave me and, in nutritionists speak, pudding as well as

Jello, yogurt, smooth ice cream, thin fruit puree cream soups are all

considered full liquids.) The nutritionist gave me a list of mild

foods to start with- stuff like the above, no heavy meats or fibrous

vegetables to start out with. I am happy to hear that your Dad has

been put on TPN. I had severe nausea due to unexpected stricture of

a segment of ileum as a result of radiation therapy given prior to

surgery. I lost 14lb (12 percent of my body weight), but with TPN

regained 1.5 lb a week, while able to eat only 400 cal per day on my

own. TPN has to be managed carefully, especially in the face of

liver dysfunction, but with close cooperation of the nutritionists

and internists it can be a god send. TPN allowed me to go into

surgery 8 wks later in good condition. I did this at home. A home

care nurse came once a week to access my port and showed me how to

mix and hook it up. I was feeling well enough to do this on my own,

but they would have come daily if necessary.

There are a number of things that can cause vomiting. Dehydration

can make vomiting and nausea much worse, and cause loss of potassium

which can happen if you are not eating does not help either.

Hopefully fluid therapy and TPN will help out a great deal. If

careful fluid therapy and a few days time to get things settled down

does not help, then I suspect that they will want to further

investigate to try to assess the cause, whether it is a result of the

liver, or whether there is some other additional cause for the

problem as well such as an intestinal obstruction.

One question is what is causing the jaundice. That would be important

for them to know as it could alter how they try to treat it.

You did not mention whether your dad's liver involvement was due to

lots of little nodules, or several larger nodules but in several

sections of the liver. Since people are born with much more liver

tissue than necessary to do its job, the liver can sometimes have a

number of nodules without affecting function if the surrounding liver

tissue is normal. If there are lots of little tiny ones that replace

a large amount of normal liver, there may not be enough liver tissue

to do the work well.

If a tumor nodule presses up against a bile duct however, it can

cause big problems despite being a relatively small size by prevent

bile from getting into the intestine. The bile backs up in the body,

irritates the liver and causes jaundice. If this is the cause,

several people here have had a stent, a wire support put into the

bile duct to keep it open with rapid resolution of jaundice.

Sometimes jaundice can result if the functioning liver cells get

injured, or very swollen. That can be a result of a variety of

causes. Occasionally someone can have an unusual reaction to a drug

that can cause injury, sometimes infection can cause this, and I am

sure there are a number other causes.

You sound like you live quite a distance from your Dad. That makes

it tough. Does he have other family members or trusted friends near

by who could check in on him regularly, as well as keep him company?

I am sure he has got to be very scared. Does he have a primary care

physician who he has a good long term relationship with who could

serve as a go between, as well as offer alternative suggestions if

you feel that the hospital he is in does not have the

resources/expertise to care for him? Perhaps the gastroenterologist

who scoped him could also be a resource.

Unless he lives very close to Sloan Kettring , he will need a medical

oncologist closer to home to continue treatment. Now may be the time

to investigate who might be suitable, if you do not have a

relationship with one yet. If there is a colorectal cancer support

group in his area this may be a helpful resource also. Social

workers at the hospital sometimes know about these, as well as may be

able to make other suggestions for support.

I hope things turn around soon for your dad,

Best wishes,

Kris

> Hi everyone,

> My dad (68 years old, colonoscopy 2 years ago removed benign polyp,

> father died of colon cancer at age 57) was diagnosed with stage IV

> to the liver and had surgery to remove the polyp on 5/16/04. The

> took out 14.2 cm including part of the ileum and cecum. Liver is

> involved, both lobes, not resectable according to surgeon. They

put

> in a port-a-cath on 5/20 and released him from the hospital on

> 5/21. Surgeon dicharged him and said to eat regular food and sent

> him home w/ Tylenol w/ codeine for pain! He vomited on 5/22 and

had

> no appetite, didn't really eat after that and was readmitted

> yesterday 5/25 with severe dehydration and jaundice. I just flew

in

> from the west coast last night and spent today getting a hold of

all

> his medical records and talking to various people at the hospital.

> They had him on a full liquid diet but he still threw up (pudding?

> how is pudding liquid?) and mostly mucous after the pudding.

> Finally started the TPN IV at 6 pm, gave him morphine for pain and

> Reglan for nausea. I don't know how he will be able to get any

> treatment when he is so weak. I have made an appt at Sloan

> Kettering for June 14 to see specialist for cc with liver mets. I

> am worried he will not be well enough (they wanted to wait 4 weeks

> post surgery for appt and when I made it, he was about to be

> discharged and I thought he would be on his way to recovery). I

> want to get him out of that hospital and somewhere else. There is

a

> lot more info but I will start with this, does anyone have advice

or

> suggestions, I have only been home 24 hours and feeling like I

> cannot do this alone. At least I did get my hands on all his

> records, mainly because the medical records person was so great and

> I also went to Patient Relations.

>

> Sorry this is so all over the place, tried to get in the pertinent

> info for now.

>

> Thanks for any help,

> Ellen

[Guest guest]

Ellen- I am so sorry to hear about the rough time your Dad is having.

Both of you must be so scared and exhausted. I am happy to hear

that you have an appointment at Sloan Kettring. They are one of the

largest of the comprehensive cancer centers, and have lots of

resourses available. Although I have not been there, it was one of

the places suggested that I consider going for treatment of my

rectal carcinoma.

I am suprised to hear that they released your dad from the hospital

without knowing if he could eat. They did not let me escape until I

could eat 1200 calories of solid food. (By the way, I checked the

list they gave me and, in nutritionists speak, pudding as well as

Jello, yogurt, smooth ice cream, thin fruit puree cream soups are all

considered full liquids.) The nutritionist gave me a list of mild

foods to start with- stuff like the above, no heavy meats or fibrous

vegetables to start out with. I am happy to hear that your Dad has

been put on TPN. I had severe nausea due to unexpected stricture of

a segment of ileum as a result of radiation therapy given prior to

surgery. I lost 14lb (12 percent of my body weight), but with TPN

regained 1.5 lb a week, while able to eat only 400 cal per day on my

own. TPN has to be managed carefully, especially in the face of

liver dysfunction, but with close cooperation of the nutritionists

and internists it can be a god send. TPN allowed me to go into

surgery 8 wks later in good condition. I did this at home. A home

care nurse came once a week to access my port and showed me how to

mix and hook it up. I was feeling well enough to do this on my own,

but they would have come daily if necessary.

There are a number of things that can cause vomiting. Dehydration

can make vomiting and nausea much worse, and cause loss of potassium

which can happen if you are not eating does not help either.

Hopefully fluid therapy and TPN will help out a great deal. If

careful fluid therapy and a few days time to get things settled down

does not help, then I suspect that they will want to further

investigate to try to assess the cause, whether it is a result of the

liver, or whether there is some other additional cause for the

problem as well such as an intestinal obstruction.

One question is what is causing the jaundice. That would be important

for them to know as it could alter how they try to treat it.

You did not mention whether your dad's liver involvement was due to

lots of little nodules, or several larger nodules but in several

sections of the liver. Since people are born with much more liver

tissue than necessary to do its job, the liver can sometimes have a

number of nodules without affecting function if the surrounding liver

tissue is normal. If there are lots of little tiny ones that replace

a large amount of normal liver, there may not be enough liver tissue

to do the work well.

If a tumor nodule presses up against a bile duct however, it can

cause big problems despite being a relatively small size by prevent

bile from getting into the intestine. The bile backs up in the body,

irritates the liver and causes jaundice. If this is the cause,

several people here have had a stent, a wire support put into the

bile duct to keep it open with rapid resolution of jaundice.

Sometimes jaundice can result if the functioning liver cells get

injured, or very swollen. That can be a result of a variety of

causes. Occasionally someone can have an unusual reaction to a drug

that can cause injury, sometimes infection can cause this, and I am

sure there are a number other causes.

You sound like you live quite a distance from your Dad. That makes

it tough. Does he have other family members or trusted friends near

by who could check in on him regularly, as well as keep him company?

I am sure he has got to be very scared. Does he have a primary care

physician who he has a good long term relationship with who could

serve as a go between, as well as offer alternative suggestions if

you feel that the hospital he is in does not have the

resources/expertise to care for him? Perhaps the gastroenterologist

who scoped him could also be a resource.

Unless he lives very close to Sloan Kettring , he will need a medical

oncologist closer to home to continue treatment. Now may be the time

to investigate who might be suitable, if you do not have a

relationship with one yet. If there is a colorectal cancer support

group in his area this may be a helpful resource also. Social

workers at the hospital sometimes know about these, as well as may be

able to make other suggestions for support.

I hope things turn around soon for your dad,

Best wishes,

Kris

> Hi everyone,

> My dad (68 years old, colonoscopy 2 years ago removed benign polyp,

> father died of colon cancer at age 57) was diagnosed with stage IV

> to the liver and had surgery to remove the polyp on 5/16/04. The

> took out 14.2 cm including part of the ileum and cecum. Liver is

> involved, both lobes, not resectable according to surgeon. They

put

> in a port-a-cath on 5/20 and released him from the hospital on

> 5/21. Surgeon dicharged him and said to eat regular food and sent

> him home w/ Tylenol w/ codeine for pain! He vomited on 5/22 and

had

> no appetite, didn't really eat after that and was readmitted

> yesterday 5/25 with severe dehydration and jaundice. I just flew

in

> from the west coast last night and spent today getting a hold of

all

> his medical records and talking to various people at the hospital.

> They had him on a full liquid diet but he still threw up (pudding?

> how is pudding liquid?) and mostly mucous after the pudding.

> Finally started the TPN IV at 6 pm, gave him morphine for pain and

> Reglan for nausea. I don't know how he will be able to get any

> treatment when he is so weak. I have made an appt at Sloan

> Kettering for June 14 to see specialist for cc with liver mets. I

> am worried he will not be well enough (they wanted to wait 4 weeks

> post surgery for appt and when I made it, he was about to be

> discharged and I thought he would be on his way to recovery). I

> want to get him out of that hospital and somewhere else. There is

a

> lot more info but I will start with this, does anyone have advice

or

> suggestions, I have only been home 24 hours and feeling like I

> cannot do this alone. At least I did get my hands on all his

> records, mainly because the medical records person was so great and

> I also went to Patient Relations.

>

> Sorry this is so all over the place, tried to get in the pertinent

> info for now.

>

> Thanks for any help,

> Ellen