Hard time eating
Thanks
Tom
6/1/11 update. Thanks for all the great responses. Two weeks after I posted this things started getting better and Now I am not having any problems at all. I can eat whatever I want and even put on 5 pounds so far. It seems that i did not wait long enough after radiation for my esophagus to heal. So it does take a few weeks and longer than I thought. I go in for an Esophagectomy on Monday june 6th. Wish me luck
Tom
Comments
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I had a lot of pain and
I had a lot of pain and difficulty eating and taking sufficient liquids for nearly 6 weeks after radiation ended (but I also continued to have chemo during that time, so that may have accounted for some of my problems.) Still, the radiation really scorches the esophagus and the swelling persists (mildly) to this day almost a year after the radiation ended.
I suggest that you ask your doctor about getting some extra IV hydration. It's really important when you're having trouble swallowing liquids. I went in several times after radiation ended for extra hydration. It really makes a difference in your overall well-being. Also, serious pain meds will help with swallowing (not that lidocain liquid -- it didn't help at all, just made me gag).0 -
During radiation and chemo,
During radiation and chemo, my husband had great difficulty swallowing. While he was recovering from that ordeal in waiting for his surgery, he needed IV fluids and a jtube. He could just not get enough nutrition. The jtube was very beneficial. I was afraid of taking care of it at first but it was vital. I notice this is your first post. It will be helpful for you to let this group know your stage and plan of care. There is someone on here who has faced the same problem and can give you insight. Good luck and hang in there. We are all pulling for you.0 -
My father is having the exact same issue...
Hi Tom. First and foremost, I am sorry you have "joined the club". Lots of strength and healing thoughts your way.
My father (ECIV w/liver mets, diagnosed in Jan) is having the same exact issue and describes his pain as you do - as if something is blocking food/liquid at his Gastroesophageal junction. Thus far the doctors (we are at MSKCC) have absolutely no reason for his pain or the horrible hiccups he gets when eating. Through a CT scan and endoscopy, they have determined it is not the tumor nor scar tissue. In fact the tumor is actually shrinking so he should in reality feel less blockage. The medical team keep telling him to stick to soft foods but that is not the solution as there are times solids provide no issue and times when he can't get down even a glass of juice or applesauce! He seems to have less of an issue eating in the morning as he does in the afternoon. My sister, who is an Oncology NP, believes it may be related to his stomach not digesting at a normal rate for which there is something he can take; we are meeting with the doctors on Wednesday to discuss. I will update you if we learn anything new. Please let me know if you receive any further answers.
In the meanwhile, the "tricks" we use to keep up my father's weight are that we sprinkle protein powder on everything - muffins, pancakes, sandwiches, etc. so that he is at least getting an extra "boost" with every bite he takes. He is also drinking at least one traditional milkshake (w/protein powder) a day, plus Ensure/Boost when he can.
Hope the tricks help you. Please stay in touch!
Meghan0 -
EC updateunknown said:This comment has been removed by the Moderator
Thnks for all the info. I hae a great support team and also a good friend who went through the very same thing I an going through a year ago. So I am getting a lot of information and doing a lot of research.
I am a stage 2 EC and also have barretts. I live near Lancaster, pa and we have a great doctor here who use to work at Hershey so i am in good hands. My wife also works at the hospital where I will have my surgery. Surgery is planned for the first week in June but that may move due do the eating problem.
I do agree that a j tube is better than a stent and it would only be a couple of more weeks for me. Still have my follow up PET scan, endoscopy and unltrasound to do . I am eating and drinking enough to maintain my existing weight but cannot gain any and not getting dehydrated but it is hard to keep up.
Just had my pacemaker and arterial lead replaced on Friday so that has slowed things down a bit. I need to get some strength back before the next round of testing.0 -
Same issuesMagoo1113 said:My father is having the exact same issue...
Hi Tom. First and foremost, I am sorry you have "joined the club". Lots of strength and healing thoughts your way.
My father (ECIV w/liver mets, diagnosed in Jan) is having the same exact issue and describes his pain as you do - as if something is blocking food/liquid at his Gastroesophageal junction. Thus far the doctors (we are at MSKCC) have absolutely no reason for his pain or the horrible hiccups he gets when eating. Through a CT scan and endoscopy, they have determined it is not the tumor nor scar tissue. In fact the tumor is actually shrinking so he should in reality feel less blockage. The medical team keep telling him to stick to soft foods but that is not the solution as there are times solids provide no issue and times when he can't get down even a glass of juice or applesauce! He seems to have less of an issue eating in the morning as he does in the afternoon. My sister, who is an Oncology NP, believes it may be related to his stomach not digesting at a normal rate for which there is something he can take; we are meeting with the doctors on Wednesday to discuss. I will update you if we learn anything new. Please let me know if you receive any further answers.
In the meanwhile, the "tricks" we use to keep up my father's weight are that we sprinkle protein powder on everything - muffins, pancakes, sandwiches, etc. so that he is at least getting an extra "boost" with every bite he takes. He is also drinking at least one traditional milkshake (w/protein powder) a day, plus Ensure/Boost when he can.
Hope the tricks help you. Please stay in touch!
Meghan
Sorry to hear your father is having the same problem I am having. It's no fun and very annoying. I also have a hiatal hernia which compounds the problem. Our symptoms sound exactly the same. Good luck with the dr visit on Wed.
My wife saw my dr this morning ( works at the same hospital) and he thinks I will need a j tube or stent and I should call him on Wed. Lets keep each other posted on our progress
I haven't used the protein powder yet but need to try it.
Tom0 -
Welcometomh140 said:Same issues
Sorry to hear your father is having the same problem I am having. It's no fun and very annoying. I also have a hiatal hernia which compounds the problem. Our symptoms sound exactly the same. Good luck with the dr visit on Wed.
My wife saw my dr this morning ( works at the same hospital) and he thinks I will need a j tube or stent and I should call him on Wed. Lets keep each other posted on our progress
I haven't used the protein powder yet but need to try it.
Tom
Hello Tom and welcome to our EC family discussion board. My dad passed away March 9, 2010, from ec at the gi junction with mets to the liver. Your story sounds almost identical to my dad's. He too had chemo and radiation. Because he was dx at stage IV, he was not able to be operated on. He also had 5 bypass surgery in the past, and the drs at UVA thought it would be too much of a risk. Long long story short.....my dad also had to have a stent put in. The dr. found a lot of scar tissue in the esophagus area, she said it was from radiation. After he had stent put in...he did pretty well with the eating. It is just unfortunate that his ec had to travel to his liver. With you being able to have the surgery, that is wonderful. You are also at an excellent hospital. University of Pittsburgh Pa is also excellent. Once you have surgery, you will almost definitely need to have the j tube. I will be thinking and praying for you. Keep us posted.
Tina in Va0 -
My personal opiniontomh140 said:Same issues
Sorry to hear your father is having the same problem I am having. It's no fun and very annoying. I also have a hiatal hernia which compounds the problem. Our symptoms sound exactly the same. Good luck with the dr visit on Wed.
My wife saw my dr this morning ( works at the same hospital) and he thinks I will need a j tube or stent and I should call him on Wed. Lets keep each other posted on our progress
I haven't used the protein powder yet but need to try it.
Tom
From my husband's experience and from what I have read here, go with the jtube. It is below the stomach area. The little pump does the work for you and is easy to operate. I have read of some on here having trouble with the stent. Of course, your medical team's reasons are the defining factors, but I go for the jtube.0 -
This comment has been removed by the Moderatortomh140 said:EC update
Thnks for all the info. I hae a great support team and also a good friend who went through the very same thing I an going through a year ago. So I am getting a lot of information and doing a lot of research.
I am a stage 2 EC and also have barretts. I live near Lancaster, pa and we have a great doctor here who use to work at Hershey so i am in good hands. My wife also works at the hospital where I will have my surgery. Surgery is planned for the first week in June but that may move due do the eating problem.
I do agree that a j tube is better than a stent and it would only be a couple of more weeks for me. Still have my follow up PET scan, endoscopy and unltrasound to do . I am eating and drinking enough to maintain my existing weight but cannot gain any and not getting dehydrated but it is hard to keep up.
Just had my pacemaker and arterial lead replaced on Friday so that has slowed things down a bit. I need to get some strength back before the next round of testing.0 -
difficulty swallowing
Dear tom140, I as diagnosed as a stage iv in August of 2009, and had much difficulty swallowing BUT and I must say BUT I never did radiation we went right ahead with chemo and that last from Sept. 11, 2009 until November on 3 diff. chemo's, surgery Dec. 10, 2009 on Dec. 17, 2010 after complaining to the doctor that I was again having difficulty swallowing which sometimes included liquids, they did another endoscope with a balloon and stretched out the wall which has since allowed me a great deal of comfort with most foods. I know it isn't the exact same thing as in your case but perhaps this should be discussed with your doctor.
And if I may be so bold as to say this, I'm not saying your doctor is not qualified but with New York being so close it may be worth a visit to a doctor that specializes in this field in NYC. It can't hurt and not for anything I have never heard of anyone flying to Pa. for specialized treatement it's D.C, New York or Boston.
Good luck in whatever you decide, just my thoughts.0 -
difficulty swallowing
Dear tom140, I as diagnosed as a stage iv in August of 2009, and had much difficulty swallowing BUT and I must say BUT I never did radiation we went right ahead with chemo and that last from Sept. 11, 2009 until November on 3 diff. chemo's, surgery Dec. 10, 2009 on Dec. 17, 2010 after complaining to the doctor that I was again having difficulty swallowing which sometimes included liquids, they did another endoscope with a balloon and stretched out the wall which has since allowed me a great deal of comfort with most foods. I know it isn't the exact same thing as in your case but perhaps this should be discussed with your doctor.
And if I may be so bold as to say this, I'm not saying your doctor is not qualified but with New York being so close it may be worth a visit to a doctor that specializes in this field in NYC. It can't hurt and not for anything I have never heard of anyone flying to Pa. for specialized treatement it's D.C, New York or Boston.
Good luck in whatever you decide, just my thoughts.0 -
difficulty swallowing
Dear tom140, I as diagnosed as a stage iv in August of 2009, and had much difficulty swallowing BUT and I must say BUT I never did radiation we went right ahead with chemo and that last from Sept. 11, 2009 until November on 3 diff. chemo's, surgery Dec. 10, 2009 on Dec. 17, 2010 after complaining to the doctor that I was again having difficulty swallowing which sometimes included liquids, they did another endoscope with a balloon and stretched out the wall which has since allowed me a great deal of comfort with most foods. I know it isn't the exact same thing as in your case but perhaps this should be discussed with your doctor.
And if I may be so bold as to say this, I'm not saying your doctor is not qualified but with New York being so close it may be worth a visit to a doctor that specializes in this field in NYC. It can't hurt and not for anything I have never heard of anyone flying to Pa. for specialized treatement it's D.C, New York or Boston.
Good luck in whatever you decide, just my thoughts.0 -
difficulty swallowing
Dear tom140, I as diagnosed as a stage iv in August of 2009, and had much difficulty swallowing BUT and I must say BUT I never did radiation we went right ahead with chemo and that last from Sept. 11, 2009 until November on 3 diff. chemo's, surgery Dec. 10, 2009 on Dec. 17, 2010 after complaining to the doctor that I was again having difficulty swallowing which sometimes included liquids, they did another endoscope with a balloon and stretched out the wall which has since allowed me a great deal of comfort with most foods. I know it isn't the exact same thing as in your case but perhaps this should be discussed with your doctor.
And if I may be so bold as to say this, I'm not saying your doctor is not qualified but with New York being so close it may be worth a visit to a doctor that specializes in this field in NYC. It can't hurt and not for anything I have never heard of anyone flying to Pa. for specialized treatement it's D.C, New York or Boston.
Good luck in whatever you decide, just my thoughts.0 -
Dear Tom,My father is aCrankyFranky said:difficulty swallowing
Dear tom140, I as diagnosed as a stage iv in August of 2009, and had much difficulty swallowing BUT and I must say BUT I never did radiation we went right ahead with chemo and that last from Sept. 11, 2009 until November on 3 diff. chemo's, surgery Dec. 10, 2009 on Dec. 17, 2010 after complaining to the doctor that I was again having difficulty swallowing which sometimes included liquids, they did another endoscope with a balloon and stretched out the wall which has since allowed me a great deal of comfort with most foods. I know it isn't the exact same thing as in your case but perhaps this should be discussed with your doctor.
And if I may be so bold as to say this, I'm not saying your doctor is not qualified but with New York being so close it may be worth a visit to a doctor that specializes in this field in NYC. It can't hurt and not for anything I have never heard of anyone flying to Pa. for specialized treatement it's D.C, New York or Boston.
Good luck in whatever you decide, just my thoughts.
Dear Tom,
My father is a Stage IV EC patient. He had several stents inserted during his early treatment when he was Stage III --- which dropped into his stomach and caused serious health issues and hospitalizations. They had to stop chemo and he was in rehab for over a month. By the time he recovered and was looking at the surgery they discovered his cancer had spread to his liver. The stents can create many complications and in my personal opinion I would shy away from using a stent and consider a J-Tube.
By the way one of the best Esophageal Surgeons in the entire country and an exemplary team of oncologists are at the University of Pittsburgh Medical Center in Pittsburg, PA. I have travelled with my dad (I live in Delaware and he lives in New Orleans) and attended many doctor appointments over the last two years. I have been at a regional hospital, Sloan Kettering in NYC, MD Anderson in Houston and UPMC in Pittsburg. I can tell you that the care he has received at UPMC is the best he has received during this fight with the monster. I would be happy to discuss my experience with you.
And I must say I have heard from others on this site of caring experienced physicians in many other locations --- the key isn't necessarily where the doctor is located but more that he or she is an expert and focuses on EC and then that they are doctors who want to treat the whole patient and have compassion and an ability to discuss difficult issues openly and honestly with the patient and the family.
Good luck,
Cindy0 -
Eating and Drinking Problems
Hi everyone, I am from Australia and my partner has been diagnosed in March 2011 with ec Stage 3, he has had 2 lots of chemo and the second has given him an ulcerated throat. Had his pikk removed Monday 2/5 and Dr looked at his throat but didn't give him any medication if it worsened, which ofcourse it did. On Wednesday I suggested to him for me to ring the hospital to see if there was anything they could give him for the pain and to help him at least drink more fluid, but he waited until Thursday 5/5 for his appt with the Dr and then obtained medication. It is now Saturday 7/5 he is drinking better, but can't even eat icecream and extremely stubborn, I thought the medication would have helped a lot more by now.
We have another appt with the Dr on Monday for blood tests and check. He is due for the operation on Monday 30/5. I think this discussion page is great and just came across it by accident. Helps to read the other comments and to hear other people going through ec. Good luck.0 -
Think twice before a stent!!
I am not a cancer patient but my dear brother is. He is stage 4 and was diagnosed in August of 2010. They immediately placed a stent in him as he was having such difiiculty swallowing. My brother thought having the stent would help him finally eat but he has had trouble ever since. The doctor actually told him that many believe the stent is for eating but that is not so it is to keep that area of the esophagus opened so it does not completely close.
Most of my brother's pain and his heavy morphine medication has come from the stent. How we all wish he never had that thing put in.
To this day after aggressive chemo and much shrinking of that horrible tumor he still has difficulty eating and holding anything down.
I heard dilating (stretching of the esophagus) helps and of course the Jtube that everyone is talking about which so far my brother keeps trying to avoid for some reason.
Hope whatever you decide it will work for you.
You will be added to my prayers!
rose0 -
Me Too
Tom,
I'm sorry to hear you're having difficulty eating. I am stage IIa (T3N0M0) and am going to start chemo and radiation in a week or so. Thank you for posting your info because I'm trying to determine what effects it's going to have. I already have trouble swallowing...it seems to vary from day to day. I cut solid food into very small pieces and it seems so far I can tolerate it for the most part although I sometimes have difficulties. Looks like it may get worse with the chemo and radiation from what I've read here. I'm going to be stocking up on Carnation Instant Breakfast. I don't know if I can have a J-Tube inserted or not because I'm on the anti-platlet drug Plavix for a heart condition which pretty much rules out any type of surgery for the near term, but that's a bridge I'll cross when I get to it. From what I've read here I'm definitely going to forgo the stent if they recommend it......seems like there's a lot of problems that can occur with one. In any case, best of luck.0 -
What the doctor finally told my Dad about eating...tomh140 said:Same issues
Sorry to hear your father is having the same problem I am having. It's no fun and very annoying. I also have a hiatal hernia which compounds the problem. Our symptoms sound exactly the same. Good luck with the dr visit on Wed.
My wife saw my dr this morning ( works at the same hospital) and he thinks I will need a j tube or stent and I should call him on Wed. Lets keep each other posted on our progress
I haven't used the protein powder yet but need to try it.
Tom
Hi Tom. After another endoscopy the doctors finally determined that the cause of my father's "fullness" and feeling of something being stuck in his junction is an increase in the rigidity of the upper stomach. It is not the cancer spreading, as the tumor is actually shrinking, and is not the esophagus therefore no need for a stent. It is an issue with the actual stomach wall. They believe it is happening as a reaction to the chemo, though my sister (the Oncology NP) is going to do some research for other case studies. In the meanwhile they simply told him to just guess & check with food - continue to eat regularly foods that don't bother him, and don't eat the foods that do bother him.
Here are a list of foods that have worked for him: ice cream, chicken in small pieces, soup, ice cream, muffins & scones (with a lot of butter), ice cream, egg/tuna/chicken salad, cheese, milkshakes, very chopped up salad, pizza in small bites, ice cream, mashed potatoes, very moist meatloaf & meatballs, did I mention ice cream? (Ben & Jerry's stockholders would love him right now). We mix into almost everything either protein or recovery powder and/or pureed fruit & vegetables. He drinks at least one Ensure or Carnation Instant Breakfast a day.
Foods that are bothering him are: pasta, bread, croissants, rolls, anything "heavy" that expands in his stomach or fills him up.
Our goal is to keep up his 2500 calorie intake and are simply finding creative ways to do so.
I will keep you posted if we find anything else new. In the interim, keep eating what you can and keep up the good fight.
Meghan0 -
Hard time eating
My husband was diagnosed stage IV in October 2010. After two rounds of chemo he also has been having great difficulty eating. This last week we went back to MDAnderson for scans and to get a feeding tube inserted. Scans came back really good that the cancer had shrank in the esophagus and had resolved in the bones,several lymph nodes and thyroid gland. This was great news but we were concerned as to why he could not get anything down but liquids. When the Dr. Did endoscopy to place feeding tube he found the culprit. At the gastric junction the esophagus appears smooth but had tightened with a stricture so tight that he could not get the scope through. He commented, no wonder you have not been able to get anything down! He mentioned that he thinks the cancer might be tracking up the esophagus between the layers. During the procedure he ballooned the stricture and was able to gain access to the stomach. He was unable to insert the feeding tube as he could not get the wire to pass into the stomach, so we will return next week for the procedure again this time with interventional radiology. The good thing is that the ballooning has allowed my husband to eat solid foods for the first time in quite a while. We do not know how long it will last, but in the mean time he is eating as many fattening things as he can! Good luck to you. Hope you get this issue resolved. Will keep you in our prayers.
Cheryl0
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