feeling of starvation and sick to my stomach

bob0008943

i am wondering if anyone has feelings of intense starvation till you eat, and then you become sick to your stomach. then you feel like your starving again and it cycles over and over again all day. it is so troubling that i asked my doctor, if i could get a feeding tube re-installed. i had half my stomach and my esophagus removed about a year and half ago. the problem seems to be getting more intense.

EagleMark

I've lost 60 pounds in 5

I've lost 60 pounds in 5 months before the diagnoses of esouphogous cancer and it was obvious why I was having a hard time eating. Was dealing with heartburn during this. Now the heartburn is under control I do have some appitite, but still hard to eat so my main food is ensure and protein drinks.

 

I do feel as though I'm starving and the body may be in starvation mode. Once I get some protein drink down I do get a little sick and loose any appitite and it atarts all over...

BruceInFla

Low appetite

I was diagnosed with esophageal adneocarcinoma in September, 2011 at age 42.  I had chemo and radiation, then the Ivor-Lewis esophagectomy in February 2012.  It has since metasticized to my abdomen and I am now on chemo (FOLFOX) every two weeks.

I do not get the feeling of starving, but I often get sick to my stomach after eating.  I have been taking zofran and marinol to fight the  nausea after eating but it does not always work.  For me, the problem has also gotten worse, and I've lost 30 pounds since last June but seem to have stabilized my weight.  I am having a hard time determining what the source of the problem is.  My GI suspects that it is the chemo, and my oncologist thinks it is something else because his patients don't get sick on the FOLFOX.  Or maybe it's the cancer in my abdomen.  I don't know what state you are in but marijuana has also helped with my appetite and nausea.  

I have read other comments by people who have had esophagectomies and most seem to have done very well after surgery.  I would like to hear from others who have problems eating a year or more after the surgery.

mrkenney

BruceInFla said:

Low appetite

I was diagnosed with esophageal adneocarcinoma in September, 2011 at age 42.  I had chemo and radiation, then the Ivor-Lewis esophagectomy in February 2012.  It has since metasticized to my abdomen and I am now on chemo (FOLFOX) every two weeks.

I do not get the feeling of starving, but I often get sick to my stomach after eating.  I have been taking zofran and marinol to fight the  nausea after eating but it does not always work.  For me, the problem has also gotten worse, and I've lost 30 pounds since last June but seem to have stabilized my weight.  I am having a hard time determining what the source of the problem is.  My GI suspects that it is the chemo, and my oncologist thinks it is something else because his patients don't get sick on the FOLFOX.  Or maybe it's the cancer in my abdomen.  I don't know what state you are in but marijuana has also helped with my appetite and nausea.  

I have read other comments by people who have had esophagectomies and most seem to have done very well after surgery.  I would like to hear from others who have problems eating a year or more after the surgery.

Just because your oncologist

Just because your oncologist doesn't have any patients dealing with nausea while on FOLFOX doesn't mean patients don't experience it. I didn't do well on FOLFOX6. I didn't do horrible but I did experience nausea and I was on some pretty good anti nausea meds. The nausea pretty much went away by day 6 and I could tank back up on the food. The difference between you and I is my cancer metasticized to the Liver. I've got a treatment buddy who sounds very similar to you and is having a hell of a time keeping anything down because of the cancer in his stomach. He's not having issues swallowing, it's that it gets backed up in his stomach. Is it nausea that you're dealing with or is it blockage and reflux?

BruceInFla

mrkenney said:

Just because your oncologist

Just because your oncologist doesn't have any patients dealing with nausea while on FOLFOX doesn't mean patients don't experience it. I didn't do well on FOLFOX6. I didn't do horrible but I did experience nausea and I was on some pretty good anti nausea meds. The nausea pretty much went away by day 6 and I could tank back up on the food. The difference between you and I is my cancer metasticized to the Liver. I've got a treatment buddy who sounds very similar to you and is having a hell of a time keeping anything down because of the cancer in his stomach. He's not having issues swallowing, it's that it gets backed up in his stomach. Is it nausea that you're dealing with or is it blockage and reflux?

I usually get a feeling of

I usually get a feeling of fullness after a few bites, my stomach will tighten up.  I will get cramps, become very fatigued, and occasional vomiting.  It's a lot like dumping syndrome even though my GI does not think it is that.

Josie60

Are you eating small meals frequently?

One suggestion is to eat every 2 hours or so. Scheduling can make that difficult though. For me since they cut the vagus nerve during the surgery and that controls the hunger sensation I need to remember to eat, the only other sign I get is when my intestinal tract starts to hurt a bit.  I still can't eat much at one sitting especially the evening meal. And many foods I use to eat I no longer can digest. meats are particullarly hard for me so getting proteins are a challenge. If you have had a feeding tube before I'm sure you realize that since the body is getting all it needs from the formula it desire to eat is diminished even more.  I had a feeding tube twice once for 4 months and again for eight months. I've been able to stabilize my weight for the last 5 months. But I am now a stage 4 fighter  I would do a feeding tube again if necessary.

 

bob0008943

mrkenney said:

Just because your oncologist

Just because your oncologist doesn't have any patients dealing with nausea while on FOLFOX doesn't mean patients don't experience it. I didn't do well on FOLFOX6. I didn't do horrible but I did experience nausea and I was on some pretty good anti nausea meds. The nausea pretty much went away by day 6 and I could tank back up on the food. The difference between you and I is my cancer metasticized to the Liver. I've got a treatment buddy who sounds very similar to you and is having a hell of a time keeping anything down because of the cancer in his stomach. He's not having issues swallowing, it's that it gets backed up in his stomach. Is it nausea that you're dealing with or is it blockage and reflux?

i am not sure. they did

i am not sure. they did another scope and said it was ok.  my family doctor said he did not know much about it and just doesn't answer any of my questions.  i asked if i should she a cancer doctor and he said no need; but is not listening to me (to busy). 

bob0008943

mrkenney said:

Just because your oncologist

Just because your oncologist doesn't have any patients dealing with nausea while on FOLFOX doesn't mean patients don't experience it. I didn't do well on FOLFOX6. I didn't do horrible but I did experience nausea and I was on some pretty good anti nausea meds. The nausea pretty much went away by day 6 and I could tank back up on the food. The difference between you and I is my cancer metasticized to the Liver. I've got a treatment buddy who sounds very similar to you and is having a hell of a time keeping anything down because of the cancer in his stomach. He's not having issues swallowing, it's that it gets backed up in his stomach. Is it nausea that you're dealing with or is it blockage and reflux?

do you think i need an

do you think i need an oncologist? my doctor said no.

bob0008943

Josie60 said:

Are you eating small meals frequently?

One suggestion is to eat every 2 hours or so. Scheduling can make that difficult though. For me since they cut the vagus nerve during the surgery and that controls the hunger sensation I need to remember to eat, the only other sign I get is when my intestinal tract starts to hurt a bit.  I still can't eat much at one sitting especially the evening meal. And many foods I use to eat I no longer can digest. meats are particullarly hard for me so getting proteins are a challenge. If you have had a feeding tube before I'm sure you realize that since the body is getting all it needs from the formula it desire to eat is diminished even more.  I had a feeding tube twice once for 4 months and again for eight months. I've been able to stabilize my weight for the last 5 months. But I am now a stage 4 fighter  I would do a feeding tube again if necessary.

 

i eat small meals. i eat

i eat small meals. i eat something every hour or two. i try to drink something after an hour and then wait an hour before eating. food selection is very small and yogart, cheeses, putnut butter, and eggs. i drink tea. just about everything else upsets me. they did a eating study, and said i dump to soon.

BruceInFla

bob0008943 said:

do you think i need an

do you think i need an oncologist? my doctor said no.

If you have cancer then you

If you have cancer then you definitely need an oncologist.

bob0008943

BruceInFla said:

Low appetite

I was diagnosed with esophageal adneocarcinoma in September, 2011 at age 42.  I had chemo and radiation, then the Ivor-Lewis esophagectomy in February 2012.  It has since metasticized to my abdomen and I am now on chemo (FOLFOX) every two weeks.

I do not get the feeling of starving, but I often get sick to my stomach after eating.  I have been taking zofran and marinol to fight the  nausea after eating but it does not always work.  For me, the problem has also gotten worse, and I've lost 30 pounds since last June but seem to have stabilized my weight.  I am having a hard time determining what the source of the problem is.  My GI suspects that it is the chemo, and my oncologist thinks it is something else because his patients don't get sick on the FOLFOX.  Or maybe it's the cancer in my abdomen.  I don't know what state you are in but marijuana has also helped with my appetite and nausea.  

I have read other comments by people who have had esophagectomies and most seem to have done very well after surgery.  I would like to hear from others who have problems eating a year or more after the surgery.

it has been about a year and

it has been about a year and a half since my surgery. eat is ALL together different now. the foods i eat are very limited. no sweets, no fresh fuits or veges, limited meat and must watch fiber. it hasn't seemed to change with time. i remind myself that this is the price for living longer.

bob0008943

BruceInFla said:

If you have cancer then you

If you have cancer then you definitely need an oncologist.

but my family doctor said

but my family doctor said that i am now cancer free and unless there is a change i don't need one.

BruceInFla

bob0008943 said:

but my family doctor said

but my family doctor said that i am now cancer free and unless there is a change i don't need one.

That's great that you are

That's great that you are cancer free.  You just said that your surgery was only a year and a half ago.  I assume you are getting regular CT scans.  I personally would rather have my oncologist look at those scan results than my primary.  Are you seeing a GI?  He may be a better person to discuss your dumping issues with.

bob0008943

BruceInFla said:

That's great that you are

That's great that you are cancer free.  You just said that your surgery was only a year and a half ago.  I assume you are getting regular CT scans.  I personally would rather have my oncologist look at those scan results than my primary.  Are you seeing a GI?  He may be a better person to discuss your dumping issues with.

i had one ct when i went to

i had one ct when i went to the er with pain in my abdamen that doubled me over. no one has ever said anything about regular ct scans.

paul61

bob0008943 said:

i had one ct when i went to

i had one ct when i went to the er with pain in my abdamen that doubled me over. no one has ever said anything about regular ct scans.

You are not getting appropriate follow up care

Bob,

I am not a medical professional but based on my experience and the experience of many of the survivors I have had contact with over the last few years it does not appear that you are getting appropriate follow up care. The National Comprehensive Cancer Network (NCCN) guidelines suggest regular physical exams, blood work, and if indicated radiological scans to identify potential recurrence. You can find a copy of the guideline here: http://www.nccn.org/patients/guidelines/esophageal/index.html.

I would suggest, given our current symptoms, that you should be under the surveillance of an oncologist that follows NCCN guidelines and possibly evaluation by a gastroenterologist  that is familiar with the gastric changes that result from "esophagectomy with gastric pull up".

 From a personal perspective, I had Ivor Lewis surgery four years ago and I am still receiving six months exams with blood work and CT scan and endoscopy exams annually.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Four Year Survivor 

 

JKGulliver

bob0008943 said:

i eat small meals. i eat

i eat small meals. i eat something every hour or two. i try to drink something after an hour and then wait an hour before eating. food selection is very small and yogart, cheeses, putnut butter, and eggs. i drink tea. just about everything else upsets me. they did a eating study, and said i dump to soon.

Stomach pain after eating

Post surgery, my husband also experienced pain in his stomach and sometimes nausea after eating.  It varied from mild to absolutely flattening.  You don't say where you were treated or under what circumstances, but your followup care is curious and verges on inapproriate, based on what we've experienced.  After EC surgery, you should have regular followup for five years.  

My husband discussed his after-meal problems with both his oncologist and surgeon.  It was the surgeon who prescribed medication to deal with the problem.  The medication worked.  He takes it prior to eating and the pain/nausea have not ceased, but are now under control.  It has made life alot easier.  We were also told, through a friend, that mints and gum containing xylitol had the unintended side affect of relieving this kind of pain.  We tried it.  The mints worked but not the gum. My husband uses the mints when he is snacking and starts to feel something in his stomach.   

bob0008943

JKGulliver said:

Stomach pain after eating

Post surgery, my husband also experienced pain in his stomach and sometimes nausea after eating.  It varied from mild to absolutely flattening.  You don't say where you were treated or under what circumstances, but your followup care is curious and verges on inapproriate, based on what we've experienced.  After EC surgery, you should have regular followup for five years.  

My husband discussed his after-meal problems with both his oncologist and surgeon.  It was the surgeon who prescribed medication to deal with the problem.  The medication worked.  He takes it prior to eating and the pain/nausea have not ceased, but are now under control.  It has made life alot easier.  We were also told, through a friend, that mints and gum containing xylitol had the unintended side affect of relieving this kind of pain.  We tried it.  The mints worked but not the gum. My husband uses the mints when he is snacking and starts to feel something in his stomach.   

i had my surgery at toledo

i had my surgery at toledo hospital in toledo, ohio. i will admit i wanted the cancer treated quickly and did not get a second doctors opion. i feel that my doctors treated me and no follow up or plan for follow up was thought of. i feel that my doctors (family and GI) have failed me. they make me feel like i am waisting their time. i hoped things would get better as time pasted. it has become worse and they are no help. my surgery was july 3, 2012 and as i look back, i wish i had not had the surgery.

dfd24

paul61 said:

You are not getting appropriate follow up care

Bob,

I am not a medical professional but based on my experience and the experience of many of the survivors I have had contact with over the last few years it does not appear that you are getting appropriate follow up care. The National Comprehensive Cancer Network (NCCN) guidelines suggest regular physical exams, blood work, and if indicated radiological scans to identify potential recurrence. You can find a copy of the guideline here: http://www.nccn.org/patients/guidelines/esophageal/index.html.

I would suggest, given our current symptoms, that you should be under the surveillance of an oncologist that follows NCCN guidelines and possibly evaluation by a gastroenterologist  that is familiar with the gastric changes that result from "esophagectomy with gastric pull up".

 From a personal perspective, I had Ivor Lewis surgery four years ago and I am still receiving six months exams with blood work and CT scan and endoscopy exams annually.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Four Year Survivor 

 

follow up care and eating

Hello,

I agree with paul.  My husband's recurrence appeared 18 months after his operation on a follow up ct scan which he was getting every six months.  he is under treatment since his recurrence and on the whole feels pretty good. he does a lot of exercise, bicycling. he often feels tired after eating , so limits his food intake when he wants to do a lot of stuff, but he eats quite normally in the evening, just not all at once.

wish you all the best,

danièle

Rank17

it doesn't have to be dire...

Just posted this on another EC blog site after reading a stream of pretty dire post-op experiences...just wanted to provide a more positive view for anyone contemplating the esophagectomy:

"As we all do, i've been reading everything I can on this blight since I first got the news last Friday 13th of September - how ironic was that!
Staging suggested I was at stage 3, with one lymph node impacted. This was enough for my doc to OK an esophagectomy. Ahead of this he got me onto nine weeks of chemo, which went surprisingly well - not so much from a curative perspective...it just didn't knock me about as bad as i'd expected.
The op took place on January 21, so today i'm one day shy of four weeks post-op. 
I know that's nothing compared to many of you survivors, but after some of the tough prognoses i've read here recently, I just wanted to let anyone approaching their own op (with understandable trepidation) to know, if i'm anything to go by, its not all doom and gloom.
I've been eating solids now for almost two weeks. I'm doing the "eat a little, eat it often" approach but i'm already finding my portion sizes and opportunities to eat are increasing. 
Take today...I started with aa glass of freshly squeezed juice (mango, apple, banana, carrot, beetroot and ginger) at 5.00 (i'm an early riser) ahead of a 30 minute walk. At 6.30 I had what i'd call a half serve of home-made cream of chicken soup. At 9.00 I had a half serve of german sausage and baked beans ahead of a session hitting golf balls (i'm a golf tragic and i've been told its ok for me to ease back in). 
Come 11.30 it was a half serve of a lasagne I made yesterday...plenty of chewing but it went down a treat. This afternoon, after my siesta, I had a small bowl of icecream and some crackers with cheese. I'll end the day eating at about six, with a bowl of greek yogurt and mashed banana - my "baby food" indulgence.
So eating has gone well. I'm even managing a glass of white wine mid-afternoon as a treat. I've found the only problem my stomach causes is if I eat too much, too late in the day, so i'm making sure I avoid testing this out too much. If I do, its primarily stomach cramps that get me - though usually for no longer than an hour.
I've been lucky with dumping - i've had it once, and that was triggered by a necessary sugar hit (chocolate and flavoured milk) when my blood sugars dived one evening (i'm a 55 year old male insulin-dependent diabetic). Reflux has also been a rare visitor, thank heavens. Its woken me up once at night - coughing up bile is never any fun, but a glass of milk and a strong mint did the trick.
So there you have it...a month out, still no way near through recuperation, but life already feels like its establishing a new, reasonably acceptable, normal.
Hope that helps any of you approaching the op - I can't guarantee this will be what you experience, but I can tell you that it might."

bob0008943

dfd24 said:

follow up care and eating

Hello,

I agree with paul.  My husband's recurrence appeared 18 months after his operation on a follow up ct scan which he was getting every six months.  he is under treatment since his recurrence and on the whole feels pretty good. he does a lot of exercise, bicycling. he often feels tired after eating , so limits his food intake when he wants to do a lot of stuff, but he eats quite normally in the evening, just not all at once.

wish you all the best,

danièle

thank you all for your info.

thank you all for your info. i now have a new family doctor. i am going to see my gastroenterologist in march. it took me over a week just to get someone in the office. auto phones. i will ask him about ct's ect. thanks again to everyone. it is great to know others like me care.