I am so sorry to hear that your husband finds himself in this situation at such a young age. Esophageal Cancer used to be called an “old man’s disease” but we are seeing many more folks diagnosed at a younger age.

I am a bit surprised to read that your husband had a “failed procedure to place a feeding tube”. If we are talking about the placement of a jejunostomy feeding tube (J-tube), is a fairly straightforward procedure. Can I ask what the issue might be? I completed chemotherapy without a feeding tube, but I have to admit that having a j-tube to assist with nutrition and hydration would have made my journey easier.

Traditional chemotherapy administration is typically done in 21 or 28 day cycles depending on the chemotherapy agents used; so taking one month to assess the benefit of a targeted therapy seems reasonable. I assume your husband’s oncologist has had a biopsy tested for HER overexpression. There are some that believe that HER positive esophageal cancer can be more aggressive. I am definitely not a healthcare professional, so my comments are based on my personal experience, and what I have seen as a survivor of esophageal cancer over the last seven years. I have seen many people take as long as six weeks to complete staging and beginning treatment so a month does not seem excessive.

Of course when diagnosed with something like cancer we all want to get treatment started as soon as possible but a successful targeted therapy might be much easier on your husbands immune system than traditional chemotherapy.

It sounds like you have found a surgeon that has some experience with esophagectomies. I would urge you to insure his/her experience is with minimally invasive laparoscopic surgery. I would also be careful to qualify the facility where your husband will recover from surgery. Even as “minimally invasive” surgery; this is a complicated surgery with an extended recovery time. Having an experienced recovery facility can make a major difference in potential complications after surgery. Sloan Kettering has a good reputation, if that is the facility you are considering. It is a National Comprehensive Cancer Network (NCCN) member institution. Since this is a Phase Ib/II Study your husband should get very close monitoring to assess both drug benefit and safety.   

Wishing your husband the best as he completes treatment.

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
Seven Year Survivor

Hello Magicbeans,

Sounds like you're on the right path, getting a second opinion at a world class cancer center and looking into a trial at another top center.  You are doing right by your husband; EC is major big deal stuff and should be treated as such.  I wouldn't worry very much about the trial delaying the chemo/radiation by a month.  That's fairly quick and likely worth the potential benefits of the durvalumab.  Please stay in touch as you travel down this road.

Best Wishes,

Ed

Hello again “MagicBeans”

Your letters of April 2 and April 3, 2017, required some intense research.  You told us of several appointments you were planning to make relative to your husband’s recent diagnosis of Esophageal Cancer, Stage III.   You spoke highly of the surgeon at Georgetown.   Would her name be Dr. Blair Marshall, Chief of Thoracic Surgery at MedStar Georgetown University?

Here is an 18-minute video in which she explains what Esophageal Cancer involves.  She stresses the Ivor Lewis Minimally Invasive Esophagectomy.  When I listened to her video, I was impressed.  As Dr. Marshall points out, some older surgeons have not updated their skills, and prefer to perform the “open” (TransThoracic Esophagectomy – Ivor Lewis).  But, the patient’s comfort and recovery should be the primary concern, therefore the MIE with small band-aid size incisions is preferable.  So based on the assumption that she is the surgeon with whom you and your husband consulted first, here is that video link.  And the rest of my letter will have links as well. 

1. https://www.youtube.com/watch?v=A3vC3hy8XYw

_____________________________________________________________________

Here is a testimonial from a patient re Georgetown and Esophageal Surgery.

2.  https://www.medstargeorgetown.org/2016/11/10/removing-esophageal-cancer-without-cracking-the-chest/#q={}

_____________________________________________________________________

By now you have had an appointment with Johns Hopkins.  You will be interested to know that they rank #3 nationwide relative to Gastrointestinal and GI surgery.  Incidentally the hospitals will have different ratings for different kinds of specialties.  That’s why it is so important to go to a hospital where multiple Esophagectomies are performed.  And I would personally stress the MIE.  The larger the volume, the more experience hospitals have with difficult cases, and the MIE is major surgery, believe me.

3.  http://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

Since reading your letter of April 2 and April 3, 2017, I did some additional research relative to the clinical trial you mentioned.  You told us about your upcoming appointments, and the scheduled visit to Sloan Kettering on April 11, 2017 re the “clinical trial.”  To be honest, my husband and I both came to the same conclusion as to what we would do if we were in your shoes.  We came to the conclusion that “A bird in the hand is worth 2 in the bush.”  We say that after researching this clinical trial for Durvalumab.   No conclusions have been reached—no study results have been posted.  At this early stage, it has not been proven to be better than the standard treatment for Esophageal Cancer patients.   And with a Stage III diagnosis, time is of the essence.  According to the “Clinicaltrials.gov” reference for this clinical trial, no definitive results will appear before November of 2018.

So by now, I suppose you’ve planted all your magic beans.  We will all be anxious to know “how many have sprouted”.  We care about everyone that writes here, and we certainly want you to give us a progress report when you have the time.  Knowing how hectic this time in your life is, you may not be giving us an answer right away, but we’re praying that you will make the very best decisions possible, and that you’ll be writing here 14 years later telling us about how your “garden grew”!

Praying for all the best for you and your husband and your twins,

Loretta (& William)

_____________________________________________________________

The references below cover info about feeding tubes, minimally invasive surgery, and the clinical trial you told us about. 

I know you are not considering going to the West Coast for surgery, but I’m sending you a video by Dr. Ninh Nguyen—an extremely gifted young thoracic surgeon who actually worked with Dr. James D. Luketich back when Dr. Luketich pioneered the Ivor Lewis Minimally Invasive Esophagectomy (MIE) in the mid-90s at the University of Pittsburgh Medical Center.  (UPMC)  Dr. Nguyen now operates out of UC-Irvine in California.  So strictly for the purposes of instruction this video will let you see exactly how the laparoscopic MIE is performed.  It’s about 45 minutes.  Now at first you might get a bit “queasy” when seeing all those tools moving around inside the abdominal and chest cavity, but it’s how the GIANT is slayed!

5.  https://www.youtube.com/watch?v=hx4hS21AbuI

“Minimally Invasive Esophagectomy featuring Ninh T. Nguyen, MD, Professor of Surgery Chief, Division of Gastrointestinal Surgery, University of California, Irvine Medical Center (SDMK13CD0800259)”

____________________________________________________________________

While I have several videos on file relative to the different Esophagectomies that can be performed, MIE is the “King of the Hill”.  I prefer this particular video because of the way Dr. Nguyen explains what is taking place during the MIE.    

Interestingly, in the introduction to the operation (excerpts) Dr. Nguyen specifically states that this patient has a Gastrostomy tube and he does NOT like for his patients to have a Gastrostomy tube (G-tube.)

In your letter, you were disappointed that your husband had not yet been able to have a feeding tube inserted and he was losing a lot of weight.  Even though the J-tube is preferable, if I were in your shoes at the time, I would not have quibbled about which kind as long as my husband had some immediate help with nutrition. 

 Dr. Nguyen says that prior to performing the MIE, he has to remove that “G” tube.  Insertion of a “J” tube is part of the surgical procedure of the MIE.  So when possible, it’s best to start with the J-tube to begin with.  It’s my understanding that the G-tube can actually be put in place “bedside” by a trained nurse, whereas the “J-tube” insertion is an operating room procedure. 

Here is a video with a doctor narrating an instructional video on how a G-tube should be inserted into the stomach.  Now you will understand why Dr. Nguyen states in his video that the presence of a G-tube makes his surgery more difficult.  He states that it must be removed before he can proceed with the MIE procedure which involves the insertion of a “J-tube”.  However, no doubt by this date, April 12^th, your husband has some kind of a feeding tube in place.  So this reference will probably be “out of date” for you.  Surely your husband has been able to have some nutrition to give him strength by now.  I can certainly understand the urgency of a feeding tube insertion!  Since other patients may follow postings on this forum, I will leave this information in for the benefit of anyone considering feeding tubes.

________________________________________________________

6.  https://www.youtube.com/watch?v=09UxdjLVAvE

However, since it appears your husband’s “T3” status will make him a viable candidate for an Esophagectomy, a “J” tube is preferable.  Your husband needs to be strong for the chemo/radiation pre-op (neo-adjuvant) treatments.  All or part of the diseased Esophagus will be removed.  The stomach will be “spliced in a certain fashion” and elongated to make a new “gastric conduit”.  The J-tube is critical to the recuperation of the patient.  The reason being, there is no possible way that one can begin a normal eating pattern immediately following surgery.

As I’ve often stated before, my husband’s first meal consisted of 2 tablespoonsful  of Cream of Wheat.  Moreover, liquid intake is critical, but should be done between meals—not with the meal.  But we’ll “climb that part of the beanstalk” when we get to it!

Relative to the “J-tube” here is more information.  Here is a link detailing the use and care of a J-tube.

_____________________________________________________________

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

“Jejunostomy feeding tube

A jejunostomy tube (J-tube) is a soft, plastic tube placed through the skin of the abdomen into the midsection of the small intestine. The tube delivers food and medicine until the person is healthy enough to eat by mouth…”

Now I’m moving on to a different part of the beanstalk here.  These are some instructions on what to do upon discharge from the hospital.  It references the J-tube.  There is good information on the side bars as well.

____________________________________________________________

9.  https://medlineplus.gov/ency/patientinstructions/000241.htm

“Esophagectomy – discharge

The esophagus is the tube that moves food the throat to the stomach. You had surgery to remove part, or all, of your esophagus. The remaining part of your esophagus and your stomach were rejoined.  If you had surgery that used a laparoscope, several small cuts (incisions) were made in your upper belly, chest, or neck. If you had open surgery, larger cuts were made in your belly, chest, or neck.

 What to Expect at Home

You may have a feeding tube for 1 to 2 months after surgery. This will help you get enough calories to help you gain weight. You will also be on a special diet when you first get home.  Your stools may be looser and you may have bowel movements more often than before surgery…”

__________________________________

10.  http://www.pat.nhs.uk/downloads/patient-information-leaflets/gastroenterology/152 Having a jejunostomy feeding tube.pdf

“Having a Jejunostomy Feeding Tube (Surgical Jejunostomy) This information will help you to make the decision about whether to have a jejunostomy tube…

What is jejunostomy feeding? A jejunostomy tube is a small polyurethane tube which is inserted into your jejunum - the beginning of your small intestines, just below your stomach. Jejunostomy feeding is a safe and effective method of giving liquid nutrition, fluid and medicines to people who need to be fed in a way that bypasses the stomach…”

___________________________________________________________

11.  https://www.merriam-webster.com/dictionary/anastomosis

The place where the new gastric tube is rejoined is called the “anastomosis”.  An anastomotic leak is a serious setback and must be attended to immediately.  You will hear this word used often along with the word “gastric conduit or new gastric tube.”

Here’s the link for a definition and pronunciation.  There is also a small “audio” symbol so one can hear how it is pronounced.  That sure helps me.

________________________________________________________________

You said in your letter that you would be having an appointment at Sloan Kettering on April 11, 2017.  So by now, April 12, 2017, you have probably narrowed your choices, and reached some conclusions.  I, for one, would be eager to learn of your decisions. 

Based on the info you gave us, Relative to the clinical trial at Sloan Kettering regarding the immunotherapy drug Durvalumab, at this point the trial is very early and has produced NO conclusive evidence that it excels the STANDARD treatment of care approved by the FDA for Esophageal Cancer patients.  While EC can be a deadly cancer, and often is, there are survivors. Every time my husband and I read about another person being diagnosed with Esophageal Cancer, we immediately pray they will be a survivor.  The patient’s stage of cancer will determine the treatment options. 

 So “MagicBeans”…using the beanstalk analogy, since you asked our advice, neither my husband, nor I, would venture that far out on a limb.  We say, “A bird in the hand is worth 2 in a bush!”  In this case, the “bird in the hand is the standard treatment” and the “two in the bush” are still flying around and not sure where they will land.  But that decision is certainly yours to make, and we respect that.

In my research, I see that there are 30 different Durvalumab clinical trials being conducted for many types of cancer.

________________________________________________________________   

  13.  https://www.mskcc.org/cancer-care/clinical-trials/16-1405

A Phase I/II Study of Durvalumab and Chemoradiation before Surgery for Esophageal Cancer

Full Title - IIT: Pilot Phase Ib/II Study of Durvalumab (MEDI4736) and Chemoradiation for Esophageal and Gastroesophageal Junction Adenocarcinoma

Purpose - The purpose of this study is to assess the safety of adding the investigational drug durvalumab (also called MEDI4736) to chemoradiation using two standard chemotherapy drugs, carboplatin and paclitaxel, before surgery in patients with cancers of the esophagus or the junction between the esophagus and stomach (gastroesophageal junction). The medications used in this study are given intravenously (by vein).

Eligibility - To be eligible for this study, patients must:

1. Have operable esophageal or gastroesophageal cancer.  Have not had prior chemotherapy.  Have an ECOG status of 0 or 1.  Be age 18 or older.  For more information about this study and to inquire about eligibility, please contact Dr. Geoffrey Ku at 646-888-4588.

   Protocol 16-1405 – Phase Pilot- Investigator Geoffrey Y. Ku - Co-Investigators - Abraham J. Wu Pari Shah Daniela Molena  Disease - Upper Gastrointestinal › Esophageal Cancer - Locations - Memorial Sloan Kettering Memorial Hospital

   ClinicalTrials.gov Visit ClinicalTrials.gov for full clinical trial description

   ________________________________________________________

2. 14. https://clinicaltrials.gov/ct2/show/results/NCT02962063

This study is currently recruiting participants. (see Contacts and Locations)

Verified December 2016 by Memorial Sloan Kettering Cancer Center…

No Study Results Posted on ClinicalTrials.gov for this Study

About Study Results Reporting on ClinicalTrials.gov

__________________________End of references_______________________

Wow!! The two of you have certainly had a very busy and information packed week. It sounds like you have done your research very thoroughly and talked to all the right people. My esophageal cancer tumor was also right in the middle of my gastroesophageal junction in fact the radiologist who read the scan commented that it was unclear if the tumor had originated in the esophagus or in the cardia of the stomach.

I had the traditional “open” Ivor Lewis surgery, and some of the unpleasant complications. So if I had it to do over again; I would find someone who felt they could do a good job with the newer minimally invasive laparoscopic approach. There are lots of survivors out there who have had good results with minimally invasive surgeries.

It sounds like you are in a bit of a holding pattern until the peritoneum biopsy results come back. I will be sending prayers for benign results. It is always difficult waiting for test results, something that unfortunately those of us who are survivors live with.

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
Seven Year Survivor

Hello again ~ You had me worried when you started mentioning the words "Peritoneal Carcinomatosis"--that really would have been a game changer!  You know that's the "neck of the woods" where I live.  So this good news is a great relief. 

Keep the faith, take the long look, but make the most of each day God gives you.  We rejoice with you today.

Love & prayers,

Loretta

Well hello Magicbeans-

It's late August now.  One more day and September will be here.  How did your garden grow?  We sure would like to know how things progressed for your husband.  You told us that you anticipated chemo/radiation would begin right around Mothers' Day, and then surgery in early August.  Now we know caregivers are always busy, but we’re “bean counters” too, you know.  We are left to wonder what on earth happened?  Was the neo-adjuvant and surgery possible?  What kind of chemo was administered?  Which doctors did you choose?  Did Dr. Marshall perform the MIE? 

In other words, we think the “harvest” should be “in” by now, and we want to know about the “crop”.  Was it bountiful—that would mean “successful”?  If so, let us know.  If not, let us know please.

Eager to know,

Loretta aka EC Bean Counter