Have questions about Dad-going on 4 weeks post chemo/radiation

MissF

Hi all

My Dad was diagnosed with EC in November. Had a endo US and I don't have the staging info in front of me at the moment. It is advanced and I can post specifics if important.

He had 7 weeks of 5 day per week radiation and would have had the same of chemo but his port got infected so he missed 2 weeks. He has underlying health issues that dictated a watered down version of chemo. The plan all along was to avoid any stomach tubes etc. he really isn't a good surgical candiate.

He has a pic line that was put in after the port got infected and had to come out. He finished receiving chemo with it and is now getting TPN nutrition. He is stronger since starting the TPN but is still struggling badly with: exhaustion, nausau/retching/vomiting mucus and his sugar is very high.

He didn't experience any of the classic side effects of radiation/chemo until after it was completed. The doctors were quite amazed. They said that with in a couple weeks he should start feeling better, he seems to be slipping further and further away. Have other people experienced this?

Today he had a cat scan so I'm assuming this week or next we should know something more. I can get more specifics on the grading etc. We were told it was localized advanced.

Thanks,

Missi

Unknown

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MissF

unknown said:

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Hi William,
I will try my
Hi William,

I will try my best to give you some more background:

My Dad is 68 who has been through alot. He was a heavy smoker/heavy drinker unitl about 8 years ago when he he got sober. He has liver disease, beat prostate cancer, has had 2 operations for his circulation and has contracted C-diff twice and struggles to this day with bouts of diarreha.

We live in Eastern part of US and he received his diagnosis from a gastro Dr. here after having a scope down for trouble swallowing/pain. He traveled to UMass in Worcester for an endoscopic US for staging. I would have to get the paperwork from Mom for the exact staging language. It is localized (contained) advanced w/ as far as they could say no nodes. It has not spread (he had a PET scan).

He doesn't make a good surgical patient because of his underlying health. His Dr. did not want to put a stomach tube in and briefly discussed the tube in small bowel (is that a J tube) but opted for a dual port, which promptly got infected. He had a 1 week stint in the hospital fighting infection and the port came out. That was when he contracted CDiff again. The Dr decided to put a pic line in and continue with remaining chemo. My Dad amazed the Dr. with virtually no side effects from radiation or chemo until 7 or 8 weeks in. The reason why 7 weeks of treatment probably was becasue, again due to his health (liver), he received a water downed version of drugs. The drugs used were Carboplatin, Taxotere and 5-FU. He has been DONE with treatment for 4 weeks now.

Yes, Dad cannot eat. He can manage small amts of water and a few spoons of broth. He experiences alot of pain and nausau. Right now his primary care Dr is managing the TPN nutrition and his oncologist is seeing him for followup and just says it's normal that any day now he should be feeling better. The high suguar is from the TPN nutrition, it is a very common side effect. I feel as though it is intensifying the exhaustion and nausau.

My Dad would not come here and post, it's not his style. He relys on me and Mom to take in and process the info at appointments etc. He did not get a second opinion. He is a very complicated case due to the underlying health issues and trust his Dr here. At this point he is discouraged and probably will not do the surgery. The Dr. have mentioned that as a last ditch effort maybe surgery would be do-able. We feel otherwise and I would push for another opinion before doing it. Again, it wasn't the tumor that is inoperable it is his underlying health that makes no surgeon want to touch him.

Missi

Unknown

MissF said:

Hi William,
I will try my
Hi William,

I will try my best to give you some more background:

My Dad is 68 who has been through alot. He was a heavy smoker/heavy drinker unitl about 8 years ago when he he got sober. He has liver disease, beat prostate cancer, has had 2 operations for his circulation and has contracted C-diff twice and struggles to this day with bouts of diarreha.

We live in Eastern part of US and he received his diagnosis from a gastro Dr. here after having a scope down for trouble swallowing/pain. He traveled to UMass in Worcester for an endoscopic US for staging. I would have to get the paperwork from Mom for the exact staging language. It is localized (contained) advanced w/ as far as they could say no nodes. It has not spread (he had a PET scan).

He doesn't make a good surgical patient because of his underlying health. His Dr. did not want to put a stomach tube in and briefly discussed the tube in small bowel (is that a J tube) but opted for a dual port, which promptly got infected. He had a 1 week stint in the hospital fighting infection and the port came out. That was when he contracted CDiff again. The Dr decided to put a pic line in and continue with remaining chemo. My Dad amazed the Dr. with virtually no side effects from radiation or chemo until 7 or 8 weeks in. The reason why 7 weeks of treatment probably was becasue, again due to his health (liver), he received a water downed version of drugs. The drugs used were Carboplatin, Taxotere and 5-FU. He has been DONE with treatment for 4 weeks now.

Yes, Dad cannot eat. He can manage small amts of water and a few spoons of broth. He experiences alot of pain and nausau. Right now his primary care Dr is managing the TPN nutrition and his oncologist is seeing him for followup and just says it's normal that any day now he should be feeling better. The high suguar is from the TPN nutrition, it is a very common side effect. I feel as though it is intensifying the exhaustion and nausau.

My Dad would not come here and post, it's not his style. He relys on me and Mom to take in and process the info at appointments etc. He did not get a second opinion. He is a very complicated case due to the underlying health issues and trust his Dr here. At this point he is discouraged and probably will not do the surgery. The Dr. have mentioned that as a last ditch effort maybe surgery would be do-able. We feel otherwise and I would push for another opinion before doing it. Again, it wasn't the tumor that is inoperable it is his underlying health that makes no surgeon want to touch him.

Missi

This comment has been removed by the Moderator

MissF

unknown said:

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Wow that's a long post! I'm
Wow that's a long post! I'm going to quickly reply to a couple things and go back later tonight and re-read your post.

My Dad did radiation. He received 35 treatments of radiation and 5 rounds of chemo. Missed 2 weeks of chemo because of infected port. I agree that something needs to be done about his nutrition. He has rounds of appointments next week and I plan on attending all of them. My parents tend to be passive with Dr. but I am not so I sense alot of tension coming

We live a couple of hours from Worcester and about 3 or so on a good day from Boston. I am educated on the liver (yes it is cirrhosis) and yes he was forced to quit drinking/smoking from a serious medical emergency 8 years ago.

I would never allow the Dr. here to do this surgery but I'm not sure how my Dad feels. I suspect that they are not set up to do the min evasive type here because they keep telling us that the surgery is a very big surgery. I agree no surgery unless second opinion, however we need to get Dad feeling stronger and more upbeat and positive again so that he'll be open to the surgery.

I think that you have misunderstood what his primary physician's involvement's are. The primary care Dr. is involved only to the extent of being part of a team that discusses medication choices and the coordinator of TPN. The oncologist didn't want any part of monitoring the TPN becasue he said it wasn't something he had enough experience in. I suspect that that TPN vs tube was picked becasue of failures in the past with supplements aggravating diarreha in my Dad. But that isn't working either.

I am not sure if my parents even talked with a surgeon regarding removing the tumor. Most surgeons don't want to touch him for liability reasons....he is a big risk because of his health. It is hard to even find Dr. willing to discuss feeding tube placements. My Dad had to have one put in 7 years ago and we begged and pleaded for the surgeon to do it. His reply was well if we don't do anything he's going to die anyways so I might as well do it. Great huh??

UPDATE: I saw my Mom and she had the paper from UMass which states T3Nx esophageal mass spanning from 32 cm to 35 cm in the mid esophagus. One enlarged node was visualized (level 7)FNA obtained. Hyperechogenic region of left lobe of liver of unclear significance FNA obtained. Esophageal varices (we already knew this). 2 Gastric angioectasias in the body of the stomach. 1 gastric erosion in the body of the stomach. No cancer was found in samples they took.

I also forgot to mention that Dad can not tolerate any type of general anethesia or pain meds. It sends him into an altered mental status that requires a nursing home stay and a prayer that he comes out of it. He had a consult appt with the surgeon to put in a J tube but as a team it was decided against becasue of his problems with his stomach/bowel as mentioned above and scar tissue.


Missi

Unknown

MissF said:

Wow that's a long post! I'm
Wow that's a long post! I'm going to quickly reply to a couple things and go back later tonight and re-read your post.

My Dad did radiation. He received 35 treatments of radiation and 5 rounds of chemo. Missed 2 weeks of chemo because of infected port. I agree that something needs to be done about his nutrition. He has rounds of appointments next week and I plan on attending all of them. My parents tend to be passive with Dr. but I am not so I sense alot of tension coming

We live a couple of hours from Worcester and about 3 or so on a good day from Boston. I am educated on the liver (yes it is cirrhosis) and yes he was forced to quit drinking/smoking from a serious medical emergency 8 years ago.

I would never allow the Dr. here to do this surgery but I'm not sure how my Dad feels. I suspect that they are not set up to do the min evasive type here because they keep telling us that the surgery is a very big surgery. I agree no surgery unless second opinion, however we need to get Dad feeling stronger and more upbeat and positive again so that he'll be open to the surgery.

I think that you have misunderstood what his primary physician's involvement's are. The primary care Dr. is involved only to the extent of being part of a team that discusses medication choices and the coordinator of TPN. The oncologist didn't want any part of monitoring the TPN becasue he said it wasn't something he had enough experience in. I suspect that that TPN vs tube was picked becasue of failures in the past with supplements aggravating diarreha in my Dad. But that isn't working either.

I am not sure if my parents even talked with a surgeon regarding removing the tumor. Most surgeons don't want to touch him for liability reasons....he is a big risk because of his health. It is hard to even find Dr. willing to discuss feeding tube placements. My Dad had to have one put in 7 years ago and we begged and pleaded for the surgeon to do it. His reply was well if we don't do anything he's going to die anyways so I might as well do it. Great huh??

UPDATE: I saw my Mom and she had the paper from UMass which states T3Nx esophageal mass spanning from 32 cm to 35 cm in the mid esophagus. One enlarged node was visualized (level 7)FNA obtained. Hyperechogenic region of left lobe of liver of unclear significance FNA obtained. Esophageal varices (we already knew this). 2 Gastric angioectasias in the body of the stomach. 1 gastric erosion in the body of the stomach. No cancer was found in samples they took.

I also forgot to mention that Dad can not tolerate any type of general anethesia or pain meds. It sends him into an altered mental status that requires a nursing home stay and a prayer that he comes out of it. He had a consult appt with the surgeon to put in a J tube but as a team it was decided against becasue of his problems with his stomach/bowel as mentioned above and scar tissue.


Missi

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