Esophageal Stents~Pros & Cons from patients who have had them~"J" tube is better choice N my opinion

Since stents are not a big subject of discussion here, I have chosen to answer this particular letter from "Joann" on a separate topic form.  Stents do have pros and cons, and a stent is not the "end all and be all" for Esophageal cancer patients who cannot swallow but need nutritional feedings to remain strong during times of treatment.  So I will place her letter here and then my remarks below that.  Having interacted with patients on this forum for a long time, I do remember different cases of patients having stents inserted and most did not like them.  So I am just answering Joann truthfully based on personal observation.  And if I were her, I would follow the doctor's advice and have it removed right away.  There is a better long-term alternative and that is the "J" (Jejunostomy) tube that is surgically placed in the second section of the small bowel.  That bypasses the stomach altogether and serves the patient better for his nutritional needs.  

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"https://csn.cancer.org/node/314752

Jan 31, 2018 - 10:59 am

My husband was diagnosed with stage IV esophageal cancer almost 1 year ago.  It's been quite a struggle but he's incredibly strong (mentally & physically) so he's working hard to fight through the various treatments he's tried.  He recently had a stent insterted into the esophagus (his tumor is in lower esophag...upper stomach) to provide some relief for food to pass.  After the procedure, he was dry heaving for hours but the GI team said that could be a normal reaction to the anesthesia but to call in the morning if it didn't stop.  Well...it hasn't stopped and he's back in the hospital.  He's nauseous, dry heaving, and when he sits up tall he becomes more nauseous and has problems with balance.  Doctors seemed to be baffled by it and want to remove the stent...but my husband doesn't want to because he really wants this to work.  Anyone here have similar problems with a stent?  Could the body reject it?  

I totally trust the GI team...but I sometimes find real life experience to be more reliable. 

Thanks!

Joann "

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[My reply to Joann here:]

Dear Joann:

Needless to say we are all grieved every time a new patient comes here and has been diagnosed with Stage IV Esophageal Cancer.  At that stage, only palliative measures are taken such as chemotherapy and radiation.  Your husband is to be admired for “fighting through all the pain and suffering that this cancer inflicts upon the patient.”  We desperately want to stay alive and maintain some quality of life.  Therefore your husband’s attitude and fight for survival are so understandable.  You’ve raised a very important question about the stent your husband just had inserted in his esophagus.  Obviously he wants it to work, but I would trust the doctor’s judgment in this case.

Doctors are well aware that a stent may not work for many reasons and is not always a “fix” to ease in swallowing.  Although your husband may want to leave the stent in, if this were my husband I would encourage him to listen to the doctors.  I would want it removed as soon as possible.  I commend the doctors who are obviously aware that your husband’s health is obviously being made worse by the insertion of this stent.  I commend the doctors for being so observant, and would totally trust their decision to remove it asap. 

Obviously, stents do work for some patients, but NOT for ALL.  Your husband’s story matches many that I’ve read here through the years.  “One stent does not “fix” or “fit” all patients who suffer with this cancer, and cannot eat.  My comments below lend credence to that statement.  I know of several instances in which a patient’s condition was made much worse by the insertion of a stent, even though it may have been a covered stent as opposed to a simple mesh stent without a covering. 

Having been an observer and contributor to this site for some years now, since my own husband was diagnosed at age 65 with Adenocarcinoma at the Gastroesophageal Junction (GE) Stage III (T3N1M0) in November of 2002, I’ve taken note of stent placements and their effect on the patient.  The general experience with stents here is that they caused more problems than they solved.  I'm familiar with a "J" tube because my husband had one inserted at the time of his Ivor Lewis Minimally Invasive Esophagectomy way back in 2003!  It is a "God-send."  

I remember writing a lady several years ago now and below are some of the videos that I shared with her several years ago.  They are still all available on the web.  I suggest you view them and perhaps share them with your husband.

One video is from Dr. Todd Snyder.  It shows how a stent can “migrate” down into the stomach.  When that happens, it has to be surgically removed.  This is often the case due to effective radiation.  As the radiation shrinks the tumor within the Esophagus, the stent often drops down into the stomach.  Dr. Snyder’s video actually shows the stent position after it dropped down into the stomach thus requiring removal.  That patient in this video was blessed that the stent was able to be surgically removed.

Another video is from a doctor at the Mayo Clinic.  He explains that before “covered stents”, when the stents were placed within the Esophagus, the tumor actually embedded with the tumor making removal impossible.  This has happened in some cases here.  

In another case, a young lady who was carrying for her father, was writing back and forth here.  He was a Stage IV EC patient.  His doctor placed a stent in the father’s esophagus.  His daughter wrote that her father never had another well day after that.  Right away he began to experience intense back pain and coughing.   She wrote advising us to “avoid stents.”  Since I’ve read many stories through the years, I would concur with the doctors who now want to remove the stent they just placed.  I know your husband so wants to live and thrive that he is willing to endure the pain, but the pain may not go away.  So why suffer when a feeding tube can be implanted that will benefit him in a far greater way?

There was another case of a Stage IV patient who corresponded here regularly.  Her brother had a stent placement that made things much worse.  The stent stayed open, but the problem was that once the food entered the esophagus, the food just “pooled” at the base of the stomach instead of passing on through as it should have done. 

That is why it is best to have a “J” tube placed for proper nutrition while one is undergoing treatments.  This bypasses the esophagus and stomach together.  It is placed in the second section of the “Jejunum” (small bowel).  From there the body distributes the food to the necessary organs.  It is called a “Jejunostomy” tube.  It is placed in the patient in an operating room setting.  Could you ask the doctors if they could place a “J” tube after they remove the stent?  He will probably say, “YES”.

From my experience in conversing with patients here, a stent does not enjoy a favorable reputation.  I only remember a couple of patients who say they had no problem, but for most patients and caregivers, they were unhappy with the insertion of the stent for reasons outlined in this letter, and spoken about in the videos below.  It pleases me to know that the doctors want to remove it.  I believe it is because they know that things will not improve with time, and they want to be as helpful as possible, and not inflict more pain.  If this were my husband, I would be agreeing with the doctors that the stent should be removed.  

At this point, even though it may be a “covered stent” that is more easily removed, the placement of same is not agreeing with your husband.  However, I would ask for a “J” tube to be inserted in its proper place. This will enable your husband to have the much-needed strength essential to undergo the chemo treatments and not lose a large amount of weight.

No doubt they have placed many during the time of their practice, and they quickly recognize that this is “not a good fit for your dear husband.”  A “J” tube is a better preference, and if your husband isn’t aware that it is often used to aid in nutrition.  Placement of a “J” tube is standard operating procedure when patients are able to have Esophagectomies, but are often also placed in Stage IV patients as well who are not eligible for surgery.  This is a palliative measure. 

For patients who are having an esophagectomy, placement of a “J” tube as part of the surgical procedure is necessary.  It’s necessary because the new “gastric tube” has a definite limited intake capacity and yet the patient needs energy to recoup after surgery.  The length of time one keeps it in place will depend on his/her specific diet.

In the case of my husband, in addition to the IV set-up at home, he was also outfitted with a “fanny pack” of sorts that was filled with a nutrient called “Osmalite”.  This meant that he wasn’t confined to home in order to have a “feeding.”  He could travel and just take the pack with him and receive nutrients wherever he wanted to travel.  Moreover, with a “J” tube, patients can “eat while they sleep.”  The tube hangs from an IV pole and there are indicators on the “box” as to how fast a “drip” works best for the patient in order to adequate supply the patient’s needs.  Also it is good for hydration, which is also vital to energy levels.  There is a video here in which a nurse is instructing the patient on how to use his “J” tube. 

So please view the videos and info below.  It will give you a better idea of how your husband’s nutritional needs can be met.  People that have had a “J” tube have fared far better than those who had an esophageal stent.  So your husband won’t be “losing anything” by having it removed and having it replaced by a “J” tube instead.  I hope this is the choice. 

I would also include two letters from a dear friend “Sherri”, and although she doesn’t post here now, she has given me permission to share any of her letters that I happen to have on file.  (I have several.  We became good personal friends and spoke often on the phone.)  And so I will share that with you as well. 

Hoping this is helpful for you.

Loretta (Wife of William DX Nov. 2002 @ age 65 with EC Stage III—MIE surgery on May 17, 2003 @ University of Pittsburgh Medical Center by Dr. James D. Luketich.  My husband is still blessed to be cancer free—blessed indeed!

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1.  https://www.gastroendonews.com/download/BB1168WallFlex_WM.pdf

Advances in Stent Technology for Esophageal Cancer

“…A prospective study assessed the clinical efficacy and safety of the esophageal Wallflex stent for dysphagia palliation in 37 patients with esophageal cancer.  Stent placement was successful in 36 of 37 patients, who experienced significant palliation.  Major complications occurred in 3 patients (pneumonia in 1, severe pain in 2); 8 patients developed recurrent dysphagia because of stent migration, food impaction, or tissue ingrowth or overgrowth…”

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1.      https://www.youtube.com/watch?v=WiryKHEmI5o&feature=related

BostonScientificEndo - Published on Apr 6, 2011

 “Polyflex® Esophageal Stent case studies and procedural footage - Dr. Snyder

“Procedural Footage and case studies from Dr. Todd Snyder, Elms Endoscopy Center in Charleston, SC. Learn how the Polyflex® Esophageal stent was used to treat a patient with chronic dysphagia, and a refractory esophageal stricture even after multiple dilations.”

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 2.      https://www.youtube.com/watch?v=pcX6deWRZiw&feature=related

“Esophageal stent placement and removal

Mayo Clinic - Published on Jul 15, 2011

Todd H. Baron, Sr., M.D., of the Department of Gastroenterology and Hepatology discusses the placement and removal of esophageal stent and the different techniques being used at Mayo Clinic.”

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3.      https://www.youtube.com/watch?v=Lnpbi0P2PjI

J Tube Feeding- LCI Patient Education

“Published on Aug 7, 2017

 This is an instructional video illustrating how to properly use your jejunal (J) tube pump. The information in this video is not intended to replace any medical treatment. If you have questions regarding your specific diagnosis and/or treatment, please contact your doctor or medical professional.”

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4.      [One of my letters from Sherri whose husband was diagnosed Stage IV EC @ age 48.]

"APRIL 15, 2010 - 6:29 P.M. - FOR THE NEWLY DIAGNOSED

You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual and that they don't know you as an individual.  Since coming on in June of '09, I have read many stories where the patient or the spouse is afraid to confront the doctors or to get a second or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.

Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.

 Don't hesitate to ask them about the HER2 gene and has my tumor been tested?

 Remember to ask about supplements that can help you while you are on chemo or radiation. Ours allowed us to do what we wanted, especially for chemo related neuropathy.

When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight.  The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on "I should haves or I could haves," it's too late for that.  Get going on the cure or the treatment.  You can still lead a productive life.  Push yourself and do not give up hope.  Ever!!!  Only god knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us.  We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success.  We have our not-a-surgical-candidate patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.

Good luck and best wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others. You are never alone! - Sherri"

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5.      Sherri's post - what every Stage IVb patient needs to know

 July 12, 2011 - 4:55pm

"Unfortunately stage IV's sometimes have limited resources at diagnosis. We are quite shell shocked at the news that we are hearing. We aren't equipped at that time to have gained the knowledge or the insight on the "Best Game Plan." Unfortunately, things need to happen and the need is NOW, immediately!

Most stage IV's already present with swallowing difficulties and weight loss. To have the best fighting chance, one cannot muster the strength without the proper nutrition.  Without the means to eat, a spiraling, downward effect will occur, dehydration.  You can ask any stage IV patient's caregiver here on what the downward trend in decline in health is.

Weight loss, dehydration, not wanting to eat, no appetite. When one is already dehydrated, then there will be no "wants to eat." They are struggling to get in anything under an already-reduced stomach. If by chance they can get in some food, then they will have no room for liquids. If they take in liquids, they will already have become full and will not want to eat.

Many wait on the J-tube saying, If I need it, then I'll get it later.   But sometimes, later, they are already too weak to receive it and the damage has already been done. When Jim was diagnosed. He had already lost about 30 lbs. I insisted on that tube and with an esophageal stretch, he was then able to eat by mouth and by tube, taking in at least 6000 calories per day. He went from 172 to 198 lbs in just under a couple of months.

The J-tube can also be used to ensure hydration, leaving the caregiver at peace knowing that their loved one is getting the proper balance of both nutrition and fluids.  In fact, medications can be crushed or ordered in liquids to be given in the enteral feeding bags.

 It is my opinion that stents should not be used unless it is a last resort for eating by mouth, but with that being said, I still would have a tube placed simultaneously. Just remember that at any given time, to ask for that esophageal stretch! The J-tube can be pulled out at any time.

Many stage IV's will hear at diagnosis that they are not radiation candidates.  Remember that at stage IV, you will be treated palliatively.  But you're in pain, radiation can then be used to reduce the pain. This is "Palliative" care.

Remember there are many tricks out there for gaining weight.  I, for one, do not recommend going the "Sugar" approach. (Empty calories that fill you up in a short time but satisfies the hunger without really wanting to eat more.) Eat good healthy foods, enriched with Whey protein.

One can make soups, blenderize them and add Half and Half, and Whey to it.

Lentils, cream of anything soups are great too.

Carnation Instant Breakfast shakes, with added yogurt, fresh or frozen fruits, ice cream whey, etc...I even made pancakes with cream and I believe that the calories were almost double.

Get a juicer and a pressure cooker. They worked wonders for me.  And of course don't forget that magic bullet. Hydrate with sugar free popsicles and fudgesicles! Wanting to go out to eat, Panera was a great place for us. I would ask them to put in more cream or water for Jim's soups.

As you approach chemo. Yes, weight loss will probably occur.  So you need to always stay one step ahead of the game. Take care of business before you start. Imodium, stool softeners, anti-nausea (Emend or Zofran) meds, magic mouthwash or melt tabs for taking on the dreaded thrush.

Keep a journal on the reactions experienced after the first dosage of chemo. We were able to pinpoint that on the Wednesday after chemo, Jim would get nauseous, diarrhea and vomit. We knew he would start the dehydration process. So on Tuesday, the next week, we started him up on anti-diarrhea meds, Zofran and IV hydration. In fact, we ordered the hydration for in-home use and I was able to set him up with it here for the duration. It worked wonders.

Jim throughout his journey with EC cancer never had to be hospitalized once. His blood numbers were always up, never needed any blood nor Neulasta shots. This was all due to proper hydration.

As for supplements. We were given the go ahead to try everything and the kitchen sink. The one supplement that I feel is essential in a HIGH GRADE FISH OIL. I gave this to Jim three times per day. If they can't swallow, then pop the pill and add it to the J-tube or soup. It helps with Cachexia, cancer induced weight loss! Just recently I spoke with a woman at our local grocer whose husband had throat cancer. She stated he was given the all clear with the cancer but he was dying of weight loss. No appetite! So I told her about the fish oil and she said she would try. Three months later, she saw me in the store and came over to hug me. Her husband had gained almost 24 pounds and she knew it was the fish oil.

 Our hospital dietician told me to give it to Jim and I do credit this with Jim's ability to maintain weight. It is also great for the circulation system, skin and heart as well. Recently, I was told by my vet to give it to our three year old lab for eczema and allergies.

Don't forget that EXERCISE is very important. Just because you are diagnosed with stage IV, it doesn't mean to curl up in a bed or sit in a chair. Move, walk and exercise. Each day Jim and I would walk 3 miles. He would swim and when he no longer could do that due to bone mets, I bought him hand grips, hand weights and leg weights. An exercised body gets hungry!

As Jim’s cancer progressed, he never stopped the routines. By Jim's last days, he had metastasis to the choroid part of the eye, collar bone, multiple lymph nodes, three ribs, peritoneal cavity, celiac, esophagus, bones and we believe brain.  He said he was feeling great!

Hope this helps and remember that this is my opinion only. I am not a medical doctor, just an experienced Stage IV caregiver. Good Luck and may God Bless. - Sherri"

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