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Hello Chicko,

I was in a very similar situation to your husband my first time around with EC, in 2008.  I was 40.  I was having trouble swallowing for a few months, so I went to my gastroenterologist who found adenocarcinoma at the gastric junction.  I had had pretty severe reflux for over 20 years (I actually had pancreatic surgery to relieve it in 1995).  My cancer was stage III and, being only 40, I wanted to be as aggressive as possible in fighting it.  I was looking  to extend my life by several decades, not a few months or years.  

I did a full course of chemo/radiation prior to surgery.  The surgery revealed that I had had a "complete response" to the chemo/radiation.  There was no evidence of cancer in the pathology reports. I still did a "bonus course" of chemo after the surgery, just to bayonnette the cancer corpses and make sure they were really dead.  Like I said, we were trying to be as aggressive as possible.  The bonus chemo was full strength, not the lesser dose given alongside radiation.  This time I had much harsher side effects and even lost all of my hair.  I had about 6 scraggly hairs left forming what used to be my goatee, but my wife wouldn't let me shave it, so I walked around with the most pathetic facial hair you've ever seen for a few months.  And I had to go to court regularly for my job.  Fortunately, the security folks knew me and were cool with my 5-FU fanny pack and wearing my flat cap in the courtroom to cover my baldness.

I went around enjoying life as "cured" for a couple of years, until I had a recurrence in 2011.  It wasn't a good recurrence.  It had metasasized to a lung and I was now stage IV.  I was given 7-8 months and told to get my affairs in order pretty quickly.  As you may have noticed, 2011 is much further away than 7-8 months.  I tested HER2+++ and was able to replace the clinical trial I was considering with herceptin.  Some combination of herceptin and folfox worked wonderfully for me.  Even now (after many years of weekly herceptin), my doctor and I still don't know if it is what's been fighting off another recurrence.  But we don't know that it's not working either, so we aren't going to fix something that's not broken (thus I'm still getting herceptin every week).  Herceptin had just (a couple of months) been approved for metastatic EC at the time I was diagnosed, so there's nobody, much less a whole clinical study of folks out there to guide our decisionmaking.  The TLDR version is, get tested for HER2.  

I understand, personally, several of the points you make.  38 is WAAAAAAYYYYY too young for this crap.  You & your husband want decades and decades (weddings and grandchildren, great-granchildren would be nice, too), not to extend his life by a few months or years.  I get why you want to be as aggressive as possible.  I know full well that the surgery is no "walk in the park".  I was supposed to have the laproscopic surgery, but previous scar tissue interfered, and I had to have the open surgery.  It took two surgeons and nine hours and 17, yes 17, holes put in me.  Recovery wasn't any better than the surgery itself.  I also feel your anxiety at his upcoming scan.  Folks call it "scanxiety", and although I dislike that term, it seems to fit.  I tested clean for 5+ years after my recurrence.  My last scan (this month) showed a nodule on the same lung I had my recurrence in.  Odds are that it's nothing, but my wife is terrified and I'm quite a bit unhappy about it as well.  It's now a death sentence hanging over future tests and appointments.  I get the fear/anxiety.  

Know that you are not alone here.

Wishing you guys all the best,

Ed

Dear Wife of Dustin:

Welcome~you’ve come to a site where we have “been there—done that”.  Consider this a chat between “wives” of EC patients.   

One of the first things we asked the doctor was if there was anyone we could talk to who had been diagnosed with this cancer.  We wanted to “pick their brain”.  We didn’t find anyone.  At first we were thrust on such a “fast lane” that we didn’t have time to do a lot of research.  But believe me, we vowed that “if we make it through this”, we’re gonna make it our mission to help others along the way.  And we are people of faith as well, but that doesn’t keep us from the “suffering side” of life for sure.  As a matter of fact, all our suffering will be felt this side of Heaven—certainly not on the other side.  And we have prayed and sought God’s guidance all the way. 

And we believe God answered our prayers.  You see at the time, (2002) here in the Tidewater area of Virginia, there was no surgeon trained to perform the Ivor Lewis Minimally Invasive Esophagectomy.  William (aka Billy) was only 10 days out did we learn that there was indeed a better way than the Ivor Lewis Esophagectomy, the TransThoracic Esophagectomy (TTE) commonly called the “OPEN”, and man is it ever!  William had already had pre-op chemo and radiation and scans revealed complete eradication of the tumor.  But we were told even if the post-treatment PET scan showed that the treatments had been effective that an Esophagectomy would STILL be necessary.  It was explained that often cancer cells are detected during the surgery that had not shown up on the previous scans. In our talks with patients, this is so often the case.  So no one should be deceived—surgery is a must.  And so we called Dr. James D. Luketich at the University of Pittsburgh Medical Center who agreed to review my husband William’s records plus perform some tests of his own.  Upon completion of those tests, Dr. Luketich said, “You would be a good candidate for this MIE and we will be happy to do the surgery!”  So I like to say, “We flew home on the wings of angels” because it was such an answer to prayer.  So on May 17, 2003, William then age 66, was operated on successfully.  And when others are having such a hard time, I hesitate to say how great everything went.  Nevertheless I must say that William was only in the hospital 5 days and downtown shopping with me on Day 8.

Now I’ve skipped over the normal readjustment to a new way of eating and sleeping and the time it takes to get accustomed to this, but I’ve included some references below my name.  That included the “mini” meals—the dumping syndrome, etc.  That is going to have to be experienced by EVERY newbie after surgery.  The sad part is that for instance, Paul, who faithfully posts here had the “OPEN” surgery without the benefit of pre-op (neo-adjuvant) chemo and/or radiation.  Then, when nodes were biopsied for residual cancer, there were nodes that had cancer in them.   So he had to undergo chemo AFTER his surgery, and that “doubled his trouble”.  It’s difficult enough in the adjustment period when one only has to recuperate from the surgery.  But the wonderful thing is that there can be patients who are diagnosed, have surgery, and are still alive to tell their story.  So Paul will identify with your pain of having the chemo after surgery.  He can tell you what it’s like to be recovering from the OPEN surgery as well as having post-op chemo at the same time. 

Because of Dustin’s “weakened” condition just after surgery, having the additional, often awful, side effects of more chemo is much more difficult to endure and certainly understood.  In my own chemo treatments, the anti-emetic called KYTRIL (Granisetron) worked well for me.  I took it each morning as soon as I awoke and before I felt nauseous.  And I never had nausea, except on one occasion when I had an injection of Neupogen (to boost white blood cell count).  After that I switched to “Neulasta” and no longer had that side effect.  My routine was to return the day following each of my chemo treatments of Carboplatin/Paclitaxel (Taxol) for hydration, a booster shot of Neulasta, plus some steroids.  And still it wasn’t a “piece of cake!”  If you’ve read much about William and me, you will know that I was diagnosed with my own terminal cancer, Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, in November of 2012.  So I speak from the standpoint of a caregiver to my husband and as a cancer patient myself.  “It’s indeed a whole new world.” 

At the time of my husband's diagnosis, we were raising 4 grandchildren, youngest age 8! so I know the fears you fight, wondering how you will cope with the awful possibility of being a single mom with 5 beautiful children to raise.  You’re doing everything you can at the present to see that this will not be a reality in the future, so even though it lurks always in the back of your mind, this really falls in the category of “borrowing troubles from tomorrow.”  And if you’re like me, there is a still small voice saying, “Sufficient for the day is the trouble thereof!”  And we can’t add one whit by concentrating on things that happened YET when we are trying to cope with what’s happening TODAY.  And believe me, I can’t tell you the days I’ve attended “my own funeral” before my time, and God has said, “Loretta—get back HERE—you’re not THERE yet!”  One of our EC friends shared this saying with us, "Yesterday's history, tomorrow's a mystery, today is a gift.....that's why it's called 'The Present'. And yes, I “buried my husband” the day I learned Dr. Ryan, our gastroenterologist called me on the phone.  He said, “Mrs. Marshall, I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband has CANCER!”   But here we are now 15 years later thanking God that we’re still both alive. 

Fear is a legitimate emotion—don’t get me wrong.  BUT we can’t let it control our every thought or we will be a basket case and unable to make the best decisions.    I remember a good description of the word “Worry”.  “Worry is interest paid on a debt that is not yet due.”           

But let me tell you that you MADE the RIGHT DECISION to opt for the pre-op chemo and radiation, as well as finding surgeons proficient at performing the Ivor Lewis Minimally Invasive Esophagectomy.   Clinical trials have shown that those who have the “tri-modal” treatments of chemo/radiation/surgery fare better than those who do not.  So take consolation in that fact. 

So thank God for that.  Just think of where else this cancer could have spread if you had not “put a check” on it pronto.  Yes ma’am, you did the right thing.  And so we can understand how there was just so much debilitating circumstances you could live with. And we will hope that this PET scan on Monday will show that the tumors have been killed. 

As for clinical trials, there is nothing presently that has been shown to work BETTER than the traditional chemo treatments.  Would to God that there were something “promising” but as yet nothing that the FDA will approve—even on a fast track.

I will ask if your husband was tested for HER2+?  That is an overactive gene that some EC patients have.  If not, there is a drug (not a chemo) called Herceptin that works well to cut down the excessive activity of that particular gene.  Some patients have it and for them Herceptin has been a “plus”.  Ed, who posts as “DeathOrGlory” has been on that for several years and credits it for his longevity, even though he had a recurrence after his Esophagectomy.  He will be sharing his own story with you as well.

But for now, let me say welcome and “we are open for questions!”  We don’t claim to be doctors, but there is nothing like talking with others who have already “been there—done that!” 

During one of my many trials in my 78 years of life, my dear Mom sent me a most comforting letter.  On the outside of the envelope, she wrote these words:

“PRAY FOR A FAITH THAT WILL NOT SHRINK WHEN WASHED IN THE WATERS OF AFFLICTION.”

Knowing this that “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain!” 

And we’ve found that God’s presence has continually sustained us in all the weary waters of life.  His grace has been sufficient.  May you know His presence and His peace even in the midst of this storm is our prayer.  While we can’t tell you that all will be well, we can still “hold your hand” because we have a heart that understands. 

Most sincerely,

Loretta (& William) –

In case you didn’t know about HERCEPTIN and why it is used, this reference may be helpful.  Originally, breast cancer patients were often presenting with this over-expressive onco-gene which caused the cancer to spread more quickly, and originally Herceptin was approved based on that fact.  Then it was later learned that Esophageal cancer patients were also presenting with this when they were tested for HER2 positive.  So since this article was written, it has now been approved for both BC and EC patients.  HER2 stands for “human epidermal growth factor receptor 2”.   

1.  http://www.cancernet.co.uk/herceptin.htm

“What is Herceptin? It is not chemotherapy or a hormone therapy.  It is called a monoclonal antibody which utilises the natural immune system to kill tumour cells. Although cancers grow mainly beyond normal growth control, they are sufficiently similar to the own body’s cells to enable them to hide from the immune system (the body’s defence mechanism against “foreign” attack). There are, however, some subtle differences between cancer cells and normal cells. Some of these differences may be detected with special sensitive laboratory tests. In the case of breast cancer there may be too many copies of a cancer-causing gene called an oncogene. This oncogene called HER2 is part of a family of genes called c-erbB-2 (otherwise known as her-2-/neu). Each HER2 gene results in the expression of a receptor on the surface of the cell. If the gene makes too much receptor, it is referred to as being “over expressed".  Cells that over express too much of the HER2 gene can be a specific target for therapies such as Herceptin. Technology now exists to make antibodies in the laboratory called monoclonal antibodies.  Specific antibodies have been made to detect and attach to the HER2 receptors. The antibody is therefore known as anti-HER2 called trastuzumab or its commercial name Herceptin…”

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

Diet After an Esophagectomy

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3.  https://medlineplus.gov/cancerchemotherapy.html

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Chicko7 said:

Thankful for your response

Ed,

Thank you for your response! I love how you guys joke about the “fanny pack”, we did too! I am amazed that you worked through that treatment. Dustin has not been well enough to.

 

How long did it take before you felt decent after treatment? We are on week 3 and he is still very ill. I am trying to be patient but worry why he hasn’t started bouncing back yet.

 

I am not sure if he has been tested for HER2+. I’m sure I would have remembered that.

 

‘Scanxiety” is totally fitting! I will be praying for you and your wife. What are they doing about the nodule in your lung? Do you wait? Do they biopsy it? I wonder what would be the next step if they find something like that on Monday.

 

Really, thanks for taking the time to respond, it means a lot!

 

Praying for the best for you and your family.

 

Amie

 

Hello Amie,

I'm at the infusion center now for my weekly herceptin and this is giving me something productive to do.  Sounds like Dustin and I had a similar course of post surgery treatment.  I got 12 rounds of chemo (infused) every 2 weeks and then had the 5-FU fanny pack for five days.  It took nearly six months to finish the chemo.  I was fatigued and bald, but I never was so bad off that a dose had to be postponed or cancelled.  After I finished, it took a few weeks for the chemo to work its way out of me and I was feeling good enough.  I didn't start the chemo until about 3 months after surgery, because of complications.  Maybe that delay allowed me to build up some strength to get through.

With regard to the nodule that just turned up in my lung, there's really nothing that can be done except wait and monitor it.  We're accellerating my CT scans up from every 6 months to something more frequent.  It can't be biopsied because it's too small.  It's great that it's small, but I really wish they could biopsy it and find out for sure.  If it's nothing then great, but if it is something, I'd want to start treatment sooner than later.  Kill it while it's still small before it has a chance to grow and/or spread.

Stay strong, things really do get better---just not as fast as you expect/want/hope.

Ed

Hello Chicko,

My goodness, you have been through the mill.

i just wanted to give you a reason for hope. I too am one of those frantic wives who didn't know where to turn and I found this place. When I was feeling lost, it gave me hope and I truly believe that without it, my husband Rob would not have survived.

Five years on,  this is a brief outline of the struggles to get here, but it was all worth it.

Almost six years ago Rob was diagnosed with stage 111 ardenocarcinoma. We were living in Gran Canaria near my daughter and my grandchildren. Rob had some appointments with a consultant here and after diagnosis was only offered chemo and radiation.

Fast forward to this cite and recommendations to contact Dr Lukditch. He advised me to find a surgeon with lots of experience in this field, at home in England. We flew home the following weekend. What followed was chemo for three months, followed by the Ivor Lewis op. Rob's tumour was too big and at the bottom of his esophagus for minimally invasive surgery. Like your Dustin, it was not a walk in the park. He had an esophagectomy and part of his stomach removed along with all the surrounding nodes. More than 30.

His surgeon felt that he had got it all and Rob was not offered post chemo or radiation.

Rob is fine now and just struggles with the usual dumping and difficulty putting on weight, but other than that he leads a pretty normal life and does most of the things he enjoyed before. Small meals work best and his energy levels are good.

I pray that you will have a similar outcome.

Hugs and prayers,

Marcia x

Hi! 

We're in the beginningish part of all this. My partner has been diagnosed with stage 4- 2 spots in the liver, some cardia, and some lymph nodes. We are at Moores Cancer Center at UCSD  with Dr. Hindera Patel who does studies with immunotherapy. This is something you should look into. Unfortunately, genetic testing showe he didn't have some of the markers or elevation they were looking for so we'r probably going herceptin +. However, this is a distinct option and I would suggest you look into it- and if possible, at a camcer center near you.

Good luck!