Hello Jonna,

You seem to be running into very frequent problems that EC folks run into.  It is definitely a struggle to get proper hydration and calories through chemo/radiation.  I did chemo/radiation prior to surgery.  I lost weight and strength.  I had to return to the infusion center for IVs b/c I was dehydrated.  I struggled to eat b/c the radiation basically fried my esophagus shut.  The good news is that these were just temporary side effects of my treatment.  The bad news is that those side effects really sucked.  A key thing to do is to get as many calories (ensure, supplements, etc...) as you can out of the fluids you ingest.  That way you get two for the price of one (hydration + calories vs. water=just hydration, no calories).  

Bad news coming up is that the esophajectomy is very much similar to a gastric bypass in effect.  That means even more struggles eating & losing weight/strength.  It sucks, but there's no way around it.  I was 165 lbs (not overweight) pre-cancer.  I dropped to 115.  I jokingly (grim, dark humor) said I looked like a cancer afflicted holocaust victim.  I was quite literally skin and bones, and I even had a deathly grey pallor.  It took me 8+ years to regain all of my weight.  In between these points I had a recurrence of the EC and dropped down to 115 again.  Two of the things my doctor had me doing when I was where you are (pre-surgery chemo/radiation) was taking liquid morphine to help me be able to get things down and using "magic mouthwash" (lidocaine based) to also help me to get things down.  I actually had a half liter bottle of morphine (opiods weren't as much of a crisis then).  

I'm not telling you these things to depress or scare you.  My experience is not unusual from what I've read.  I just want to tell you that you're going to hit down times/ struggles on your way.  Everyone does.  It is referred to as your "new normal" and eveyone has to figure out ways to deal with it.  The upside is that just about everyone figures it out for themselves and would do it again if they had to.  

Best wishes to you,

Ed

Dear Jonna:

Just out of curiosity, could you tell us…

1.      What symptoms you had that first caused you to see a doctor?

2.      What medical facility diagnosed you with Esophageal Cancer and what was the official stage?

3.      Did you have a SECOND OPINION?

4.      What type of Esophagectomy did you have?—Transthoracic, Transhiatal or Ivor Lewis Minimally Invasive?

5.      Why are you having TPN feeding rather than a Jejunostomy feeding tube? 

If I understand correctly, the difference between “enteral” and parenteral” is that parenteral is intravenous feeding (via a vein) whereas “enteral” is via a feeding tube.  This is the first time I’ve encountered someone that did not have a J-tube inserted during their esophagectomy.  A “TPN” feeding is unusual in my opinion.

 During the surgery itself, patients will have a “J” tube (Jejunostomy feeding tube) placed in the second section of the small intestine (Jejunum) to aid in nutrition. There is no way one can keep from losing weight after the surgery because the food intake is so limited quantity wise for quite some time.  It takes time to work up to being able to eat anything like a “normal” portion.  As a matter of fact, Dr. Luketich gave my husband a special card that indicated that William had had gastric surgery and was entitled to order a child’s portion if he so desired.  We never had a problem when we ate out when we explained the situation to the waiter-- except for one smart little waitress at an Olive Garden Restaurant.  William had ordered a dinner that came with unlimited salad.  I asked for an extra plate so I could eat the salad since it that was more than my husband could eat.  She said, “I’ll have to charge you for it.”  So I didn’t eat the salad, and I left her a penny tip.  Now in hindsight, I should have gone to the manager and complained about the waitress. 

 My husband’s first “meal” consisted of 2 tablespoonsful of Cream of Wheat.  The “lifesaver” was his Jejunostomy tube.  He used it for 3 weeks after his Ivor Lewis Minimally Invasive Esophagectomy, but some keep it in much longer.    The good part about the “J” tube was that he could hook it up at night, and the feeding could take place even while he slept.  This freed him up to be doing more things during the daytime.  He was even supplied with a small “portable pack” that could be taken with him so as not to always confine him to home during feedings.

 Osmalite was the formula recommended by our Dr. James D. Luketich at the University of Pittsburgh Medical Center.  He also recommended that William supplement his post-esophagectomy diet by using BOOST.  This is a high protein drink and comes in more than one flavor.  It has 15 grams of protein in each bottle.

All post-surgical patients will go through the same kinds of “new adjustments”.  Eating and sleeping adjustments will change.  I’m assuming you’re sleeping in an elevated position high enough to prevent gastric reflux during the night.  Eating too late at night is one of William’s problems.  Why who doesn’t need a snack while you’re watching sports on TV?  The “cost” comes in about 3:00 A.M. when he wakes up with a terrific coughing spell and burning in his chest.  So our oncologist has prescribed a 40 mg. Omeprazole tablet which is to be taken occasionally—but not every night of his life.  My husband knows when he has “overdone” the eating bit!  Eventually you will be able to return to a more normal diet, but it will be gradual. Paul has given you some good suggestions relative to diet after an esophagectomy.  Believe it or not, many patients try to go right back to their normal way of eating soon after surgery, and that just isn’t possible. 

  6.        How many hydration treatments have you received and how often?

 Surely your doctors have given you hydration.  If they haven’t, you should ask for it.  I always say, “Esophageal cancer patients shouldn’t have to beg for water!”  As soon as I learned that I had cancer and would be undergoing chemotherapy, I told our oncologist that I wanted a medi-port and that I wanted hydration after every treatment.  He said, “No problem!” 

             Since Paul and Ed both had difficulties, I almost hate to say how well my husband fared before the surgery, and afterward during the “readjustment to a new normal.”   However, he didn’t escape the “dreaded dumping” syndrome.  This is an adjustment that all patients must go through.  My husband did lose 60# during the first 9 months.  However, he was very much overweight at 6 ft. and 275#, so he needed to lose the weight.  This is the only time I think it helped to be “fat.”  He went from a size 46 waist to size 38.  He has maintained a weight of between 205 and 215 since early 2004.

7.       What kind of antiemetic are you taking?

  Did you know that “Granisetron” (KYTRIL) has been proven to be better for nausea than Zofran for instance.  Zofran is a popular antiemetic but clinical trials have proven that Granisetron excels.  So, if I were you, I would ask the doctor to change your antiemetic since nausea still persists. Furthermore, I would insist because you are the one who is nauseous.  He/She will go home after work, enjoy a good meal no doubt, and never become nauseated.  Remember, sometimes you have to become a bit adamant about what you think you need. 

  In my own case, during each of my chemo regimens, I took a Granisetron anti-nausea pill the very first thing each morning.   That served as a “pre-emptive” strike since nausea was certainly a common side effect.  So since nausea seems to be a “sidekick”, have you thought of taking your anti-nausea med the first thing upon awakening each morning?  This might help you as much as it did me.  It’s worth a try I would think.

 Like Paul, I ate at regular times even when I wasn’t hungry.  I did concentrate on having lots of protein every day.  I kept a record of what I ate and tried to have at least a 60-gram intake of protein daily.  I bought a whey isolate powder from Costco.  My husband would make me a milkshake every day.  He would use the Boost as a liquid, plus a scoop of whey isolate that had 30 grams of protein per scoop.  Then he would add a tablespoon of peanut butter, and a scoop of vanilla ice cream.  He would also break up part of a candy bar into small pieces.  I liked a Reese’s Peanut Butter cup.  I preferred the ice cream mixture thick so I could eat it with a spoon instead of drinking it through a big straw.

 (And speaking of straws, I finally found a way to gulp down that awful-tasting contrast that I have to drink when I have CT scans.  I find the fattest straw that I can and have the liquid as cold as I can.  It goes down much better.  Now when I have a PET scan, the tech says it has to be room temperature, and I find that much harder to drink.)

 For breakfast my husband would always fix me a couple of cheese eggs with a piece of toast.  I didn’t have nausea during my chemo.  (Only once when I got a NEUPOGEN injection that had awful side effects.  I was nauseous for 2 days.  So I switched to Neulasta to build up my WBC and I’ve had no side effects since then.)   I credit that to taking the anti-nausea med Granisetron early each morning.  But I did have to “drag my body around during the first chemo session”. Fatigue is still my constant companion.  But as for my husband, his energy level increased quite rapidly after his surgery.  He never suffered with nausea before or after his surgery. 

  8.      How frequent are your post-op checkups?  Only 7 weeks out, you should be being seen every couple of weeks at the least by your doctors?

9.      Have you asked them why you are on a TPN regimen when usually EC surgical patients have a “J” tube?

 10.  Have they ever given you a Neulasta injection to boost your white blood cell count?

  My habit was to have hydration, a Neulasta injection and steroids the day following each of my chemo treatments.  And although you’re not now on chemo, you’re definitely “worn out”.  But I’m thinking that you would fare much better with the “J” tube than your present TPN supplemental feeding.  So if I were you, I would press the doctors for a good explanation as to why they prefer one over the other.  Traditionally a “J” tube is preferable.

 And Jonna, sometimes even a 3rd opinion might be in order if your current doctors have seemingly “run out of answers!”   But for now, I think the most I can do is provide you with a few references on nutrition, since we’ve all fought that battle.   Paul, Ed and I all agree that chemo is rough and side effects unpredictable and sometimes almost unbearable, but it is still “the only game in town” thus far for Esophageal Cancer patients.

  The ability to be deemed a candidate for surgery is a second chance at life, so we wage the war, hoping to win the prize—life after an Esophagectomy.  Plenty of people have checked in with their doctors only to find that they are Stage IV, and only palliative measures can be given, so don’t forget to be thankful for what you do have—a SECOND SHOT at life with those you love.

 Here’s hoping and believing that things will improve in the near future. 

Sincerely ~ Loretta & William

Loretta Marshall (DX Peritoneal Carcinomatosis/Ovarian Cancer Stage IV – Nov. 2012)

William – DX Nov. 2002 – Adenocarcinoma @ the GE Junction – (T3N1M0) Neoadjuvant chemo Carboplatin/5-FU plus 25 radiation treatments-Ivor Lewis Minimally Invasive Esophagectomy  (MIE) @ the University of Pittsburgh Medical Ctr. By Dr. James D. Luketich on May 17, 2003.  Currently William has no evidence of recurrence.  That’s a miracle!)

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1.       http://www.nutritioncare.org/about_clinical_nutrition/what_is_parenteral_nutrition/

What Is Parenteral Nutrition

All people need food to live. Sometimes a person cannot eat any or enough food because of an illness. The stomach or bowel may not be working normally, or a person may have had surgery to remove part or all of these organs. When this occurs, and you are unable to eat, nutrition must be supplied in a different way. One method is “parenteral nutrition” (intravenous nutrition).  Below are some basic facts about parenteral nutrition.

 Who Receives Parenteral Nutrition?

People of all ages have received parenteral nutrition. It may be given to infants and children as well as to adults. People can live very well on parenteral nutrition for as long as it is needed. Many times, parenteral nutrition is used for a short time; then it is removed when the person can begin to eat normally again.

Normal digestion occurs when food is broken down in the stomach and bowel, then absorbed in the bowel. These absorbed products are carried by the blood to all parts of the body.

Parenteral nutrition bypasses the normal digestion in the stomach and bowel. It is a special liquid food mixture given into the blood through an intravenous (IV) catheter (needle in the vein). The mixture contains proteins, carbohydrates (sugars), fats, vitamins and minerals (such as calcium). This special mixture may be called parenteral nutrition and was once called total parenteral nutrition (TPN), or hyperalimentation.

How Is Parenteral Nutrition Supplied?

A special intravenous (IV) catheter is placed in a large vein in the chest or arm. It can stay in place for as long as needed. The nurse cares for the catheter. Proper care is required to avoid infection and clotting. Different kinds of catheters may be used. Common names of these catheters are Hickman, Broviac, PICC, triple lumen, double lumen or single lumen catheters, and ports. Nutrition is given through this large vein. Your health care team (doctors, nurses, dietitians and pharmacists) can talk with you about the different types…”

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2.       https://medlineplus.gov/ency/patientinstructions/000181.htm

“Jejunostomy feeding tube

3.       https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589130/

“Advantages of enteral nutrition over parenteral nutrition

David S. Seres, Monika Valcarcel, and Alexandra Guillaume…

Abstract

4.       http://www.ncbi.nlm.nih.gov/pubmed/22081189

“Ondansetron versus granisetron in the prevention of chemotherapy induced nausea and vomiting in children with acute lymphoblastic leukemia…

5.       http://www.oncolink.org/support/nutrition-and-cancer/during-and-after-treatment/post-esophagectomy-diet

“Post-Esophagectomy Diet

Karen Wagner, MS, RD, LDN and Katrina Claghorn, MS, RD, LDN

Abramson Cancer Center of the University of Pennsylvania - Last Modified: June 16, 2017

Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

6.       http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

“Dumping Syndrome Diet

Dumping syndrome sometimes happens after stomach surgery.

Dumping syndrome is caused by large amounts of food passing quickly into the small intestine. This causes symptoms like abdominal pain, cramping, nausea, diarrhea, dizziness, weakness, rapid heart beat, and fatigue. This diet will help stop the symptoms of dumping syndrome.

7.       http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

Diet After an Esophagectomy

An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months.

What can I expect after surgery?

For the first few months after surgery, you may have problems such as:

•   Weight loss
•   Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)
•   Excess gas
• Trouble swallowing

Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating.

What type of diet will I have?

You will have several types of diet. Your diet will change slowly based on your rate of recovery and how well you can tolerate food. The amount of liquids that you are permitted to have at one time will vary based on your doctor's recommendation. In general, your diet plan will advance as follows:

1. Clear liquid diet, for the first few days after surgery
2. Full liquid diet
3. Soft diet

Each person tolerates food in a different way. Your doctor will advance your diet plan based upon your progress after surgery…”

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8.       https://medlineplus.gov/ency/patientinstructions/000294.htm

“Diet and eating after esophagectomy

You had surgery to remove part, or all, of your esophagus. This is the tube that moves food from the throat to the stomach. The remaining part of your esophagus was reconnected to your stomach.

What to Expect at Home

You will probably have a feeding tube for 1 to 2 months after surgery. This will help you get enough calories so that you start to gain weight. You will also be on a special diet when you first get home…”