New member, stage IV esophageal cancer

Hello Bill, 

Sorry you find yourself here, but glad that you're still around.  Unfortunately, a year and a half survival is a long time for stage IV EC.  There just aren't a lot of folks who make it that long.  As such, you have a lot of value to the people on this site.  You can talk first hand to folks who find themselves in a very bad spot.  I hope you stay active here, because there really are (too many) people who would love to get 1st person insight and be offered hope when they feel hopeless.   

My case and yours are parallel in a lot of ways.  I started off stage III in 2008 and was offered chemo, radiation and surgery.  Because I was fairly young (40), we wanted to be as aggressive as possible.  I was looking to survive for decades, not just a few years.  So we did chemo/radiation, then surgery, then a bonus course of stronger chemo just to be as aggresive as possible.  I tested clean by every measure and thought I was done with it.  Unfortunately, life happens on its terms, not mine, and I had a recurrence in 2011.  This time there was a tumor in my lung (which is a bad spot to have one) and I was given 7-8 months life expectancy.  I thought I was free and clear, but it had come back and metastasized and I was now stage IV with a grim prognosis.  Surgery and radiation weren't options, so it was going to be chemo only.  

I was fortunate that I go to a top flight cancer center and they knew to test me for HER2 overexpresion.  (Some folks are still not tested b/c their docs don't know enough.  I feel bad for them and usually recommend they look for better doctors at a better hospital.)  I was HER2+ and fortunately, herceptin had just been approved for metastatic EC.  I was given folfox (brutally harsh) every two weeks and herceptin (quite mild) every week. I responded VERY well to the treatment and have been testing clean (except for a recent lung nodule) for 5+ years now.  I only got 12 rounds of the folfox, but I've been getting the herceptin every week since 2011.   We don't really know if the herceptin is holding off another recurrence, because there's no study of folks taking it as long as me, because there are no folks who have been taking it as long as me.  Regardless, something has worked very well for me so we're not going to fix something that's not broken.  So, the weekly herceptin goes on indefinitely.  

I'v also at one time or another run into a few of the hardships/side effects that you have.  I've had full body baldness.  I had diabetes for years before the EC, but cancer & its treatments does make it harder to manage.  I have permanent neuropathy in my hands and feet from the folfox (would love to hear about how the Lyrica works--please share).  When on folfox, I was so beat up that I occasionally had to crawl to the bathroom (made it every time, but one).  I lost 50 pounds, but I only weighed 165 to start with, so I was a near skeleton at 115.  

There were a couple of other things I wanted to be sure to include here.  First, I know with absolute certainty that I'd be dead now if it wasn't for my wife.  I think it's great that you're giving your wife that same recognition--caregivers' contributions are frequently overlooked.  Another thing is that, unfortunately, EC (both  adenocarcinoma and squamous cell) is not all that rare.  It has been becoming more frequent in the U.S.  Each year brings in about another 17,000 of us.  Also, what was the chemo/clinical trial combination that you were on?  Are you currently on the clinical trial and herceptin, with the chemo dropped?  That's how it sounded.  You never specified exactly why you are stage IV.  Is it the lymph nodes, or was there spread further than that?  Finally, I mention sometimes to folks how much benefit can be derived by having a positive attitude and a will to fight this SOB.  You are an example of both of those.  Keep it up.

Wishing you the best & hoping you continue living up to your username,

Ed 

LorettaMarshall said:

Bill~Re your ltr~facts re EC~Best hospital listings,welcome

Well good evening Bill,

I see that our friend “Ed” has already answered you, and as a Stage IV Esophageal Cancer patient, he is certainly a dependable source of information.  May as well know, we’re not known for glossing over and sugar coating Esophageal Cancer.  First I say “welcome”, but wish I could say, “You’re not welcome.”  This is not the kind of place we like to meet “friends” that have things in common.  Nevertheless, here we are.  Your enthusiasm is evident, but as we all know it takes more than a positive attitude to “kick cancer.” And as a newbie, you certainly need to be in the company of others who have already “been there—and done, or are doing Esophageal Cancer, especially Stage IV.

First of all, waiting 3 months to get an endoscopy is totally UNACCEPTABLE.  This is part of the reason we have so many Stage IVs present at the very start.  That, and of course, the doctors prescribing antacids instead of setting up the patient with a gastroenterologist for an endoscopy.  Of course an upper endoscopy is only the beginning of the required tests to correctly ascertain the problem.

So with regard to tests, can you tell me how many tests you took that determined that you were Stage IV?  Precisely, what is the exact diagnosis?

So for me, a stickler for detail, can you tell me:  Was it the Ireland ARMY hospital in Fort Knox, KY that you went to that put off your appointment with the gastroenterologist for 3 months?  If so, that explains why the VA hospitals need a “jacking up”!  And thank you for your service in the military.  If the Army weren’t any more prepared to go to war than the VA hospitals are to “fix the broken soldiers”, we would be in bad shape I fear!

 Secondly, I always root for the Phillies, although my husband, the EC survivor, is a Redskins diehard.  Since I’m not a real football fan, I make “emotional” connections to teams.  I like Phillies because of UPMC.  I like the cowboys because my oldest grandson likes them.  Other grandchildren like different teams, so I root for any of the teams that they like.  And since MDA in Houston is not the very best hospital for treatment of Esophageal Cancer (see stats) it’s good that you did not go there and be subject to the humiliation of being in a city filled with “Cowboys”!  And I wouldn’t have the slightest inclination to play Fantasy Football.  Stayin’ alive is enough of a gamble for me! 

My husband William, aka Bill or Billy at home, was diagnosed with Esophageal cancer in late 2002.  His diagnosis was “Adenocarcinoma at the Gastroesophageal Junction (GE), Stage III, T3N1M0).  Dr. James D. Luketich at the University of Pittsburgh Medical Center performed the Ivor Lewis Minimally Invasive Esophagectomy May 17, 2003.

Now we don’t expect you to understand what’s going on when you’re a newbie, but we do want to be certain that you have had all the tests you need, and that you have had a SECOND OPINION at a major medical facility that makes Esophageal Cancer one of their specialties.  You say, “I am on like treatment 40, and the drive is starting to beat me down. 700 miles every other week would wear a healthy fellow out, much less one with your condition. You might want to check out the USNews&World Health report rankings and locations and see if there is one closer to home.  I’ve given you some references below.

Furthermore, we would hope that it would be at a hospital where there are surgeons trained to perform the very latest Esophagectomy, the Ivor Lewis Minimally Invasive Esophagectomy, (MIE), just in case you were misdiagnosed and were actually eligible for an Esophagectomy.  There can be “nodal involvement” and still be less than a Stage IV you know.  My husband was a Stage III, meaning that the tumor had infiltrated all 4 walls of the Esophagus, and also 2 local lymph nodes. 

Now, if the nodes were “near” or “in” another major organ, then that could be a Stage IV diagnosis, but I’m not quite sure that you mentioned any other organ.  That’s the reason for my question.  I see that my friend “Ed” who posts as “DeathorGlory” has answered you and he is asking the same question.  So you will benefit greatly by interaction with Ed, and as he says other Stage IVs will benefit by your input.  Unfortunately, we have way too many Stage IVs who might have presented in with a lesser stage had they been given better attention by their primary physicians.  Just writing a prescription for “omeprazole” isn’t sufficient.

And Bill, although you weren’t aware of the potential cancer possibilities, like many others, procrastination and changing your eating habits, is NOT the first recommendation.  But as I say, all too often, it is the patient not knowing that acid reflux and heartburn can cause Esophageal Cancer.  And when one reads the instructions on the bottle, it says, this is not to be taken more than 2 weeks in duration.  If the patient has to take one every day, they should have “long ago” had an upper endoscopy to check for obstructions.  However, many seem to think that heartburn is just such an “ordinary” result of eating the wrong kinds of food—not so!  Moreover, as noted in the "CancerConnect" reference, the Upper Endoscopy is only the FIRST of a series of tests to determine the exact stage of EC.

Now Bill, as good as MD Anderson is in Texas, they are NOT the #1 hospital for Esophageal cancer, although I commend your wife for “stepping in” and saying to the doc who wanted to start treatments the very next day-- “Not so fast Sir!” Actually the MAYO Clinic in Rochester, Minnesota is ranked #1 in the Gastroenterology & GI Series category of specialties. 

  Yes, while MDA has a good reputation overall, according to the USNews&Health Report, hospitals rank differently ACCORDING TO THE SPECIALTIES that they are most noted for.  According to USNews&World Report, MDAnderson is NOT noted for being the best hospital to receive care for Esophageal Cancer.  That may surprise you.  Keep in mind, we’re talking about “Gastroenterology and GI series” treatment facilities. 

  So definitely Ireland Army Hospital would not even be in the ranking.

 I will give you references below and you can “travel around on the sites and see hospitals possibly nearer home that are better than MDA in Houston and possibly even SITEMAN Cancer Center.   For instance, by the reference below I see that “Houston Methodist Hospital - Houston, TX 77030-2707 ranks #12 in Adult Gastroenterology & GI Surgery Hospitals.  Houston Methodist Hospital in Houston, TX is nationally ranked in 8 adult specialties.  (73.1/100 Gastroenterology & GI Surgery Score)…”

 By comparison, Barnes Jewish Hospital ranks #20, and MDAnderson is not even ranked as one of the top hospitals for treatment of patients diagnosed with Esophageal Cancer.  EC falls in the category of Gastroenterology and GI Series.  So it pays to do one’s homework when going for a SECOND opinion and possible treatment.

Incidentally, MAYO clinic in Rochester, MN is ranked #1.  Now all Mayo clinics have different rankings but we are being specific as it relates to Esophageal Cancer—just so you know.  As I’ve said, hospitals are ranked differently according to their specialties, and we all know some are better than others.  Not all doctors graduate at the top of their class—unfortunately.  So it’s pretty much up to us to do our “own homework” in deciding where to go.  I certainly wish you were somewhere closer than 700 miles (round trip) to get your treatments. 

 Are you at the Barnes Jewish Hospital in St. Louis?  SITEMAN has several affiliates.  Rankings for different hospitals are referenced below my name.

 Now will you please do us a favor?  Find out the name of the clinical trial and tell us what chemicals they are giving you?  Granted that they have improved your condition, but at what price?   I note that there are 31 trials for EC going on at SITEMAN. 

 So we will be waiting to hear more “specifics” as to the duration of the clinical trial, chemicals used, as well as the “specific” diagnosis for which you are receiving treatment?  Who actually diagnosed you as Stage IV?  What specific tests did they run before suggesting this particular trial?

 What is the goal of this trial?  Currently there is no immunotherapy trial that has been approved by the FDA for Esophageal Cancer patients, although there are some in the works.  But the bottom line for the clinical trials is to find a “better” treatment plan to curtail the cancer, no matter the type, than what is currently approved by FDA today. 

 It’s good that you can still remain “positive” with the condition you’re in since January of this year.  Exactly what date did you start these treatments at St. Louis and how long are they supposed to continue?

 You say, “Since January I have remained there, no shrinkage and no growth. At the time of my third scan my quality of life was very bad.  I could hardly walk, severe neuropathy in my hands and feet, my toe nails and hair fell out, I developed diabetes and my vision was failing bad.”

 ·         How long does each treatment at SITEMAN last—a few hours—several days or what?

• ·         What are the doctors saying about all these side effects?
• ·         When is this clinical trial ending?
• ·         What are the doctors saying about your “progress at this point?”
• ·         What is the stated “end goal?”

 I’m assuming that your wife is accompanying you on all these trips.  Yes, side effects are dreadful!  Many of us know about that but we expect to be better when it’s all over.  We expect a period of “progression free survival” (PFS) that makes the ordeal worthwhile.

  My husband was treated (post op) with Carboplatin and 5-FU.  He also had 25 consecutive treatments of radiation (Monday thru Friday—I guess cancer takes the weekends off!)  Those neoadjuvant (pre-op) treatments completely eradicated the tumors, and no additional cancer was found during the (MIE) Esophagectomy in any of the 22 lymph nodes removed for biopsy.

 And while it is NOT good to be HER2 positive, meaning that you have an oncogene that causes the cancer to spread even MORE rapidly, the drug Herceptin (not a chemo drug) has proved to be exceptional in causing this gene’s overexpression to cease.  “Ed” is our “go-to-person” to attest to the benefits of Herceptin. 

 Lastly, I’m in agreement with both you and Ed, as to the value of allowing the wives to have a “say” in where you go and what you do.  However, there is a limit.  When a Stage IV EC patient wants to quit treatments, and the wife or some other close family member wants them to continue, it is the patient that MUST be given the liberty of making the final decision.  Thankfully, none of us are at that point yet. 

 And speaking of God, I’m pleased to hear that you are going to church.  For me, I fare best when I put God first in my life.  He isn’t a puppet whose strings we can pull and make every problem disappear.  So in my life, that doesn’t mean that He will always heal us, but we can sense His presence and His peace while we are traveling this often “booby-trapped minefield-laden” course.  I have several favorite Bible verses that give me comfort.  I believe strongly in Psalm 139.  My paraphrasing--David said to the Lord, “I can’t go anywhere that You are not already there.  You even saw me when I was being “knit together” in my mother’s womb, and in Your Book, all the days of my life were written when as yet there were none of them.”  I choose to believe that I serve an omnipotent, omnipresent, omniscient God who knows all about me.  And I firmly believe that I, myself, as a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer patient, will not live one day longer, or die one day sooner that my “allotted” days on this earth. 

No one else has to believe as I do, and I don’t wish to argue with anyone but my faith in the Lord sustains me in the most difficult of days.  And I do pray for many that write here, as I know that others do as well.  So consider yourself a welcome member of this family in which none of us wished to be “born”!  But here we are.  And as such, many of us here are thankful for each new day that we can hug our family members, our kids, grandkids, and see another sunrise and feel a gentle breeze while the birds chirp merrily in the trees.  Life really is made of simple pleasures, rather than fame or fortune.  Not to disparage “fortune” but in reality I am rich when I realize that I’m blessed to live another day and be in the company of those that I love.  I’m sure you feel the same way.

 Lastly, Bill, you and Ed speak wisely when you credit your wives as being the catalyst for your survival thus far.  I’ve always said, “When my husband has cancer, I have cancer!”  We’re in this thing together.  We wives like to think that we are indispensable and it doesn’t hurt to tell us that!    In Genesis 2:18, the New Living Bible says it quite well, “Then the LORD God said, "It is not good for the man to be alone. I will make a helper who is just right for him."  I rest my case.

Loretta (caregiver & instructor & wife of William, who is now into his 15^th year of survival from EC, Stage III (T3N1M0)

 

P.S. Can you do me a favor?  Bill, for ease in reading, I find it easier to read if the person writing will break down their different thoughts in different paragraphs. 

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1.      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 --- 

If you’re diagnosed with an illness, you might want to get a second opinion.

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..."
• ______________________________________________________________________

 2.       https://www.youtube.com/watch?v=jwPfq0xYqCk

Video telling about Herceptin and its usage. - Published on Oct 21, 2015

Herceptin (trastuzumab) is an approved #targetedtherapy cancer treatment for breast, stomach and esophagus cancers that are HER2-positive - positive for the Human Epidermal growth factor Receptor 2 protein. Breast cancers with too much of this protein tend to grow and spread more aggressively without special treatment. About 20% of breast cancer cases and 10-20% of stomach cancers are HER2-positive. In this video, oncologist Stephen Lemon MD describes how this cancer treatment works, as well as what types of side effects it may cause.

#Herceptin is an artificially created antibody that works to fight off cancer cells much like naturally produced antibodies which fight off germs. Herceptin is a targeted drug therapy that attacks a specific protein called the HER2 protein, which causes cancer cells to grow. 

Herceptin is made by Genentech. Dr. Stephen Lemon is a medical oncologist with Oncology Associates and is not affiliated with Genentech. Visit Http://www.oacancer.com to learn more about #StephenLemonMD and Oncology Associates. #breastcancer #HER2positive

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3.      http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

4.      http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/esophageal-cancer-overview/

[This site will give exhaustive info relative to the treatment of Esophageal Cancer.

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5.       http://news.cancerconnect.com/clinical-trial-information/clinical-trials/

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6.      https://www.cancer.gov/publications/patient-education/eating-hints

Eating hints before, during and after cancer treatments.

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7.      http://health.usnews.com/best-hospitals/area/ky/ireland-army-community-hospital-6510180

“Overview-Ireland Army Community Hospital is a general medical and surgical hospital in Fort Knox, KY, with 17 beds. Survey data for the latest year available shows that 19,812 patients visited the hospital's emergency room. The hospital had a total of 857 admissions. Its physicians performed 433 inpatient and 2,291 outpatient surgeries.”

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8.      http://health.usnews.com/best-hospitals/area/tx/university-of-texas-md-anderson-cancer-center-6741945/gastroenterology-and-gi-surgery

University of Texas MD Anderson Cancer Center Rankings & Ratings

Gastroenterology & GI Surgery | Overall Score 47.6/100

Gastroenterology & GI Surgery Scorecard - A hospital's overall Gastroenterology & GI Surgery score is based on various data categories, including volume of high-risk patients, nurse staffing and patient survival. The 50 top-scoring hospitals are nationally ranked. See the full U.S. News national rankings in Gastroenterology & GI Surgery or hospital ratings in colon cancer surgery.  National Rank Not Ranked - Overall Score 47.6/100

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9.      http://health.usnews.com/best-hospitals/area/mo/barnes-jewish-hospitalwashington-university-6630930/gastroenterology-and-gi-surgery

“Barnes-Jewish Hospital Rankings & Ratings - #20 in Gastroenterology & GI Surgery | Overall Score 70/100

Gastroenterology & GI Surgery Scorecard - A hospital's overall Gastroenterology & GI Surgery score is based on various data categories, including volume of high-risk patients, nurse staffing and patient survival. The 50 top-scoring hospitals are nationally ranked. See the full U.S. News national rankings in Gastroenterology & GI Surgery or hospital ratings in colon cancer surgery…”

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10.  https://SITEMAN.wustl.edu/treatment/cancer-types/esophageal/our-approach/

“…Washington University Physicians at the SITEMAN Cancer Center treat an average of 130 esophageal patients a year, and are internationally recognized for their expertise…”

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11.  https://SITEMAN.wustl.edu/treatment/cancer-types/esophageal/clinical-trials/

[My note:  Billy, which one of these 31 clinical trials are you participating in?  (Loretta)]

“Clinical Trials - Showing Trials Related To: Esophagus ---Searching...31 results found…”

12.  http://www.learnaboutclinicaltrials.org/#ACT

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13.  http://health.usnews.com/health-care/best-hospitals/slideshows/the-honor-roll-of-best-hospitals

UPMC Presbyterian Shadyside - Pittsburgh, PA 15213-2536

#6 in Adult Gastroenterology & GI Surgery Hospitals

UPMC Presbyterian Shadyside in Pittsburgh, PA is nationally ranked in 14 adult specialties.

77.2/100 - Gastroenterology & GI Surgery Score

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14.  http://health.usnews.com/health-care/best-hospitals/articles/best-hospitals-honor-roll-and-overview

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15.  <a href="http://health.usnews.com/health-care/best-hospitals/articles/faq-how-and-why-we-rank-and-ra

Deathorglory said:

Hello cmpitts

Hello cmpitts,

I am not knowledgeable about your husband's treatment, but I still might have something to offer you.  I am a stage IV guy myself (6 years next month) and you didn't mention your husband's HER2 status.  I was/am HER2+ and I am convinced that receiving herceptin for that is why I am still alive six years after being given 7-8 months to live.  Your husband's docs seem thorough, but I'd still check about that.

With respect to your relatives seeming unsupportive, I've noticed that some folks are so afraid of making things worse that they literally do nothing, in the hope that they at least does no harm.  It doesn't work, but I've found those folks' motives to be in the right place at least.  "If I don't say/do anything, I can't make it worse."

Wishing you guys the best,

Ed

 

He was tested but tested negative for the HER2 receptor. That was one of the treatments considered before the Irinotecan. Tomorrow morning he starts the Cyramza so we will see how it affects him.