Cindyrk23~Info re Esophageal Cancer-Herceptin-Radioembolization (Liver treatment) & hospital ratings

Cindyrk23 ~ (I’m writing as though I were talking to Cindy who is 30 years old and now diagnosed as Esophageal Cancer, Stage IV with metastasis to the Liver although her husband is the one actually posting here.) 

Based on your first post on February 18, 2018 and your last post here, https://csn.cancer.org/comment/1619360#comment-1619360 of March 1^st updating your condition, I felt compelled to add a few comments.  At the first I see that you thought most likely you would be a surgical candidate.  Now you’ve discovered spots on your liver thus making surgery not an option.  So that is the reason for my comments below.

I chose to put them on a “separate forum topic” since so many read here, but never actually post anything themselves.  It’s been my passion to see that those who find themselves in the unfortunate situation of being diagnosed with Esophageal Cancer know where to begin and find the very best hospital and medical team.

If you want to know more about any person writing here on this forum, sometimes they have written additional comments on their “about me” page.  You can access that page by simply clicking on their name.  Seemingly, very few, list anything there, but when they do it gives me more of an insight as to what they have already been diagnosed and/or treated with.  But hopefully my comments below will be of some help.  If nothing else, the ratings for the “James Hospital” and Cleveland Clinic should serve as an impetus for you to seek a SECOND opinion at Cleveland Clinic.  The rankings are compared for you in my reference list. It’s not too late to still schedule an appointment for a second opinion.  So here are my comments:

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Dear Cindy,

Being a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer patient and currently undergoing chemotherapy treatments has put me on the sidelines for a time.  But I see my dependable Cyber pals, “Ed” and “Paul” have been there for everyone as I knew they would.  Having monitored this site for years, I have been in touch with quite a few cancer patients and caregivers.  Among them was a young woman who became my dearest friend.  Her name was Sherri.  Her husband, Jim, was the epitome of health and fitness, ate all the right foods, exercised, etc.  All of a sudden at age 48, he was diagnosed with Stage IV Esophageal Cancer.  (Sadly, this is not unusual.)  They lived in Florida and Sherri & Jim were treated at Moffitt there in Florida.  The doctors gave Sherri the go-ahead to throw everything into the mix.  She made him extra-fattening foods, smoothies, and some supplements.  She was an avid researcher and smart enough to understand medical terms and discussed them with the doctors and challenged them at time.  By challenge, I mean that she would read about something that sometimes the doctors had not brought up.  When she talked to them about it, they agreed that perhaps it would be helpful.  They were totally in agreement with her.  I have kept many of her letters in my file, and I want to share one of them with you. 

In addition, I want to say that Jim’s cancer had spread to his liver.  Moffitt actually treated his liver with what is called “Radioembolization.”  Now I don’t know if this is anything that your doctors would agree to do.  But Moffitt did this for Jim.  They treated one side at a time.  It wasn’t painful and I believe it was done on an outpatient basis, but don’t quote me on that.  I just remember that the procedure was done in two increments—one for the left lobe—then a second for the remaining side for the right lobe.  However, before the second treatment could be given, the cancer had moved on, so the doctors said they would stop the treatment at that point, since the cancer was now in other places.  But as long as it was only in the liver, they did treat him.  He did have a good quality of life for what he went through.  Now Cindy, I am the last person to give one “false hope” and this may not be an option for you at all.  However, I do know it was something that was successful for Jim, if only for a short time.  The cancer simply refused to just stay in the liver.  So if I were you, I would at least “mention” it to whomever is going to be treating you.

And I’m glad you are going to have a medi-port, but I would also ask for a “J-tube” to be put in.  It is placed in the second section of the small intestine known as the Jejunum.  This will give you the extra nourishment you need to undergo the chemotherapy treatments.  Sherri’s husband had a “J-tube” but with his chemo he was able to eat some soft foods.  Sherri made him things that he could swallow more easily.  She bought a pressure cooker and cooked things that were extra tender.  A blender would be nice too.

Going back to your first post, I was disappointed to read about the “snail’s pace” at which the hospital “James” center in Ohio operates.  You wrote: “Initially I thought this is big center with research but our experience till now is not giving me confidence, they seem to go standard route of treating her case as any other 70-80 yr. old case. 

Thinking if we should consider Cleveland clinic for surgery. The process here at James is also so slow with appointments for MRI , Doc , PET scan taking at least 1 week for each , since 3 weeks we just 1 doc initial visit and MRI.” 

Cleveland Clinic is an excellent facility and if you haven’t been there yet, I would still go there for a SECOND opinion, especially since Mayo Clinic in Rochester issued their report about how many “first opinions” were not accurate.  I would think that Cleveland would be more cooperative and more aggressive by far. 

And speaking of Cleveland Clinic, Scott Hamilton, former Olympic ice skating champ, is affiliated with that clinic.  And you can key in the site “Chemocare.com” to find out all the information you need to know about the drugs and their possible side effects.  I say, “possible” because each of us respond differently to the same drugs.  My husband took Carboplatin, and 5-FU, plus 25 radiation treatments prior to his surgery, but he was EC, Stage III (T3N1M0).  He then had the Ivor Lewis Minimally Invasive Esophagectomy at the University of Pittsburgh Medical Center.  I always like to mention that because although you aren’t going to be having surgery, others that may read this letter might.  Everyone needs to know that there are different approaches to performing an esophagectomy, and the Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY is totally laparoscopic and barring any unforeseen complications, will have the quickest recovery time because it is the LEAST INVASIVE!

And as for being tested for HER2+, let’s hope that “James” has gotten around to scheduling that.  And if the results are positive, by all means you should have Herceptin added to the chemo regimen.  In itself, it is not a chemotherapy drug, but is given during the same time period that you will be having chemotherapy.  But “ED” is our expert on the efficacy of that drug.  He’s been “through H_E_L_L and back, and is still living to tell about it since he originally was operable, then had a recurrence.  But no one should ever say, “I don’t think I’ll have the surgery—since it might come back.”  Well, there are survivors that are still telling their story and they have not had a recurrence, and for those considering foregoing surgery—they should “think again.”  Cancers are alive and well, and for those who are ELIGIBLE for an esophagectomy, and think that just having chemotherapy and radiation and thinking you are cured, is “fool’s folly!” 

It’s always heartbreaking to read of another Stage IV, but here you are, so don’t give up without giving it all you’ve got. 

Love & prayers for sure,

Loretta

P.S.  If you're like me, when we first talked to our surgeons and doctors, they were using words totally foreign to me and my husband.  So here is an excellent "NIH dictionary of terms" to help you better understand what is going on. It also has an "audio" symbol so you can hear the word!

https://www.cancer.gov/publications/dictionaries/cancer-terms

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1.      https://www.cancer.gov/types/esophageal/patient/esophageal-treatment-pdq

[My note:  Please review each topic on right side of this article to understand what Esophageal cancer is and how it is treated.]

 “Esophageal Cancer Treatment (PDQ®)–Patient Version”

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 2.      https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032744/

“PDQ Cancer Information Summaries [Internet].

Esophageal Cancer Treatment (PDQ®)

Health Professional Version - PDQ Adult Treatment Editorial Board.

Published online: February 6, 2018.

This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about the treatment of esophageal cancer. It is intended as a resource to inform and assist clinicians who care for cancer patients. It does not provide formal guidelines or recommendations for making health care decisions.

This summary is reviewed regularly and updated as necessary by the PDQ Adult Treatment Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH)…”

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3.      https://www.cancer.gov/about-cancer/treatment/drugs/fda-trastuzumab#Anchor-Gastric

“…HER2-overexpressing Metastatic Gastric or Gastroesophageal (GE) Junction Adenocarcinoma

On October 20, 2010, the Food and Drug Administration (FDA) granted approval for trastuzumab (Herceptin®, made by Genentech, Inc.), in combination with cisplatin and a fluoropyrimidine (either capecitabine or 5-fluorouracil), for the treatment of patients with HER2-overexpressing metastatic gastric or gastroesophageal (GE) junction adenocarcinoma who have not received prior treatment for metastatic disease…”

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 4.      http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG

By Melissa Turtinen - April 4, 2017 12:17 pm

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

       Only 12 percent of patients left the Mayo Clinic with the same diagnosis.

       In 21 percent of cases, the diagnosis was changed completely.

       In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said…”

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5.      http://chemocare.com/chemotherapy/testimonials/scott-hamilton-a-survivor.aspx

Have questions about chemotherapy?

Call the Cancer Answer Line at Cleveland Clinic – 1-844-268-3901.

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6.      http://www.chemocare.com/

“Drug Information

Find the latest information about chemotherapy drugs including how they work, their potential side effects, and self care tips while on these therapies…”

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 7.      https://www.youtube.com/watch?v=MC6kpPuXxbE

“Sarel Gaur MD - Published on Mar 17, 2016 -

An overview of Y-90 (yttrium 90) radioembolization treatment also known as Selective Internal Radiation Therapy (SIRT). #SARELGAURMD”

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8.      https://www.youtube.com/watch?v=3WwSfGPQq9g

“Interventional Oncology - Radioembolization - DVD Series, Video 1

Stanford Health Care - Published on Jul 21, 2010

 Daniel Sze, MD, interventional radiologist, discusses radioembolization and how it can help patients with liver tumors. Learn more: http://stanfordhealthcare.org/stanfor... “

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9.      https://www.youtube.com/watch?v=YndyQkSZl5I

SIR-Spheres Y-90 resin microspheres Mode of Action Video

Sirtex Medical US

Published on Jan 14, 2016

 This animated Mode of Action video has been created by Sirtex Medical to serve as an educational resource that provides a narrative look at Selective Internal Radiation Therapy (SIRT) using SIR-Spheres® Y-90 resin microspheres. SIRT using SIR-Spheres microspheres is a targeted liver tumor treatment that delivers millions of radioactive microspheres directly to inoperable liver tumors. SIR-Spheres Y-90 resin microspheres are the only fully FDA-approved microsphere radiation therapy for the treatment of colorectal liver metastases. This video covers explanation and animation of the SIR-Spheres® Y-90 resin microspheres procedure.

Category - Science & Technology”

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10.  This is a letter Sherri wrote back in 2010. 

“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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11.  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!”

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12.  https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

Cleveland Clinic

Cleveland, OH 44195-5108

 #2 in Adult Gastroenterology & GI Surgery Hospitals

Cleveland Clinic in Cleveland, OH is nationally ranked in 14 adult specialties and 9 pediatric specialties.

88.4/100 - Gastroenterology & GI Surgery Score

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13.  https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-james-cancer-hospital-6410008

Ohio State University James Cancer Hospital 

Nationally Ranked in 1 Adult Specialty

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Rankings & Ratings

The U.S. News analysis of hospitals includes data from nearly 5,000 centers across multiple clinical specialties, procedures and conditions. Scores are based on a variety of patient outcome and care-related factors, such as patient safety and nurse staffing. U.S. News ranks hospitals in 16 adult and 10 pediatric specialties. Hospitals also receive a rating in 9 common procedures and conditions, including hip replacement and COPD. Read more about how we rank and rate hospitals.

Specialties at this Hospital

• Cancer

Procedures and Conditions at this Hospital

• Colon Cancer Surgery

• Lung Cancer Surgery

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14.  https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-james-cancer-hospital-6410008#adult-rankings

This Hospital's Performance

Adult Specialties Rankings and Ratings

U.S. News evaluates each hospital in up to 16 medical specialties. In most specialties, the top 50 hospitals nationally are numerically ranked. Hospitals that nearly made the top 50 may be recognized as high performing.

Adult Procedures / Conditions Ratings

U.S. News evaluates hospitals in certain procedures and conditions and assigns each hospital a rating of high performing, average or below average in each procedure or condition. Eligibility to be rated is based on the number of patients treated during the evaluation period. U.S. News includes Ohio State University Wexner Medical Center in evaluating the performance of Ohio State University James Cancer Hospital.

Doctors at This Hospital…”

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