Mulan1960~Info re Esophageal Cancer Stage IV-Herceptin-Hipec-"J" tube-chemo treatments-Used some "UK

[Note to Mulan1960--Since there are many UK Esophageal Cancer patients that write here, I have chosen to answer your letter https://csn.cancer.org/node/315238

in a separate topic forum so that others may be able to gain some knowledge from the things we are discussing here.  Here are my comments to the letter you wrote today.]   

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 My dear Mulan:

 First of all—you must not blame yourself for not knowing the symptoms of possible Esophageal Cancer.  It was up to the physician to know to “suspect” that some gastric problem might exist.  And all the more so, with a history of Barrett's Esophagus which is often a precursor to Esophageal Cancer!  The doctor should have referred you to a Gastroenterologist for an endoscopy!  My husband only had a hiccup.  When we went to our doctor, he made an appointment for the next day for my husband to have an Endoscopy.  You know exactly how I felt when the Gastroenterologist called me on the phone, and said, "Mrs. Marshall, your husband has Esophageal Cancer!"   

None of us “living here now” knew “way back then” what we know now!about Esophageal Cancer.  It sounds as though the diagnosis is Adenocarcinoma @ the Gastroesophageal Junction (GE junction).  Hindsight is always 20/20 in so many things, is it not?  Mulan, unfortunately your letter is all too typical.  It follows the same tragic progression of Esophageal Cancer that we experience all too often here in the states. Most of the time, as we read the entries of our friends who “present with Stage IV EC “right off, their story is just like yours.

The story goes like this—difficulty swallowing—heartburn or gastric reflux most often.  Patient goes to their regular doctor.  Doctor prescribes omeprazole for the frequent heartburn—patient returns home only to continue with the same symptoms.  Then it often develops into weight loss and more difficulty swallowing.

 Finally patient condition worsens and the doctor refers patient to a Gastroenterologist who then performs an upper endoscopy and finds obstruction in the Esophagus.  And the rest is all too often Stage IV Esophageal Cancer.  Now that isn’t always the case, but the longer the patient continues to subsist on omeprazole and just changes dietary habits to lessen the symptoms, the more the cancer has a chance to spread.  It was reported by UPMC that NEXIUM commonly known as the “purple pill” actually MASKS Esophageal Cancer symptoms and many who have been taking them for some time have come to be diagnosed with Stage IV EC.  I know this doesn’t make you feel any better, but perhaps someone reading this will realize that they need to go to a gastroenterologist and have an endoscopy.  They should INSIST as a matter of fact. 

 Now having observed this site ever since my husband was first diagnosed in November of 2002, I do know that some of the gastric cancer patients have been treated with HIPEC.  I’m sorry to hear that this is not the case for your husband.  Several of the cancers in the peritoneal cavity are treatable with HIPEC.  That said, even though the UK does not make this available to EC patients, that doesn’t mean that there is nothing else that can be done.  I’ve just written a long letter to “Nancykm23” with several references from our National Institutes of Health that give both a patient version of Esophageal Cancer and a professional’s PDQ as well.  You may have read that entry already. So below my name, I will list some that are applicable for you and your husband.  Two letters in particular are from a friend of mine named “Sherri” whose husband was also a Stage IV back in 2010.  And yes, her husband did die in 2 years.  But I did have a friend who lived with her Stage IV EC diagnosis for 5 years before her death.  And we also have “ED” who is faithful to post here and encourage Stage IV patients to press on despite the dire diagnosis at the beginning.  I’m certain you will hear from him as well. 

 There are some preliminary things that should be a “must” for Stage IV patients.  One would be a medi-port for intravenous infusions and the other the implanting of a feeding tube known as a “J” tube.  This is surgically placed in the second section of the small intestine known as the Jejunum.  This allows nourishment to supply your husband with the energy he will need to withstand the chemotherapy which is normally quite discomforting.  I don’t know how much your husband can eat presently, but even if he can still swallow, side effects can include lack of appetite, change of taste buds, nausea, diarrhea, constipation, etc. You will most likely that you and your husband will have to be “proactive” to get the doctors to go the extra mile for you.  Don’t let them take the attitude, your husband is going to die and therefore, we will just let nature take its course.

 So even if the hospitals of excellence in the UK do not offer HIPEC for Esophageal cancer patients, I assume that your husband is seeking treatment there.  I do know that because of the UK national health care system, that you cannot go directly to any doctor you wish at any time.  At least that is what we’ve been told by other patients from the UK.  There seems to be some type of “board” that decides who gets treated and where and for what.  And often treatments are simply not available there in Britain that are available here in America.  Dare I say that “cost” does enter into the picture of who gets treated for what when national health care is the only game in town?  At least that’s my summation. 

 And one more thing that should be a MUST for your husband.  He should be tested to see if he is HER2 positive.  HER2-positive cancer is a cancer that tests positive for a protein called HUMAN EPIDERMAL GROWTH FACTOR RECEPTOR 2 (HER2), which promotes the growth of cancer cells.

 If so, Herceptin is available in the UK for Esophageal Cancer.  Here in the U.S. it was first thought that some Breast Cancer patients had an overactive oncogene that multiplies itself more rapidly.  Then it became apparent that Esophageal Cancer patients were also manifesting this overactive oncogene.  And so the FDA approved the use of this drug called “Trastuzumab” (HERCEPTIN).  Our friend “ED” can tell you how he thinks he has survived these many years after his EC cancer recurred.  He credits it with a continued regimen of Herceptin.  I will give you a reference about Herceptin and who in the UK gets treated with Herceptin. 

 However, even here in the states HIPEC is not being used for gastric cancers as readily as Colon, Appendiceal or Ovarian Cancers.  And even then when they have spread inside the peritoneal cavity, the procedure is not considered “curable”.  But tests have shown that those who are treated with HIPEC as part of their Cytoreductive Surgeries do have a longer period of “Progression Free Survival” (PFS).  My own Cytoreductive Surgery for Peritoneal Carcinomatosis/Ovarian Cancer Stage IV was performed at UPMC in July of 2013.  At that time I had all “non-essential” organs removed to which the cancer would most likely eventually spread.  My surgeon, Dr. David Bartlett, at UPMC, did discuss the possibility that I would be a candidate for the HIPEC treatment.  However, that would only be decided during the surgical procedure itself.  To my disappointment, due to the cancer count and size, in my situation, he felt I would not benefit by the HIPEC treatment.  Disappointed—yes but I trust his judgment.  However, I’ve now OUTLIVED MY HANDICAP STICKER which was good for 5 years from the time I applied for it.  My 5-year Handicap placard expired on February 28, 2018!  Now that’s something to celebrate.  I'm planning on wearing it around my neck tomorrow when I go to church.  We always share "prayer and praise" time, and this is an absolute blessing.  I never expected to be alive 5 years later!  

 So Mulan, while my research for HIPEC in the UK has not found anything different than what you have found, please don’t “put all your hopes” in “if only my husband could have HIPEC, because his EC diagnosis is not one that readily lends itself to a successful outcome here in the states either.  However, that being said, it still leaves you with a “big hole in your heart and a feeling of desperation at not being able to find some protocol that gives promise of a long period of survival.  I am facing the same dilemma with my own cancer diagnosis.  And as one wife of a Stage IV EC patient has so poignantly stated, “Having the future tense stripped from your vocabulary when you’re talking to the person you intended to spend the rest of your life with” isn’t easy.  She goes on to compare her situation with one of a person who is on a vacation, and suddenly it is the next to the last day, and there are still so many places that you didn’t get to go and things that you wanted to see and do.  And you try to cram them all in on that last day.

  I must tell you that with a Stage IV diagnosis, that desire to “cram it all in” is there, and yet it is also accompanied with a certain degree of reality than will not let you live in a “dream world.”  And yet, that does not preclude your attacking the diagnosis with gusto.  Arm yourself with all the info you have available there in Britain.  Be your own advocate, inquire about certain protocols and check behind those responsible for setting up appointments to be certain that nothing is “falling between the cracks!”  Be sure that your husband has access to all that is available for Stage IV EC patients.  Don’t be afraid to ask questions and expect answers.  Be a “squeaky wheel”.  This is your life!

 Lastly, Mulan, don’t give up hope that your husband may live a lot longer than 18 months.  I could have died anytime on from the day I was diagnosed, and yet the Lord has not called me home yet.  Do all the things that you can do to be certain that your husband is getting the best treatment that is available there for his cancer.  The “sorry” word isn’t sufficient to describe the hurt I feel for you and your husband.   Hopefully, something I have shared will help to inform you of how Esophageal Cancer Stage IV patients should be treated in the U.K.

 Love & prayers for you and your husband,

Loretta

 P.S.  I have tried to find references that indicate how the UK treats Esophageal Cancer.  Also, I will share some of the same references with you that I shared with a 30 year old young woman here in the states who has also just been diagnosed with Stage IV Esophageal Cancer.  (Cindy)

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1.       https://www.cancer.gov/publications/dictionaries/cancer-terms/def/trastuzumab

 [My note:  I just typed in this link – “trastuzumab” so you can see how this dictionary of cancer terms works.  This is the name for HERCEPTIN for which your husband may or may not be using—depending on the results of his testing to see if he has an overactive gene that causes his cancer to spread more rapidly.  Key in any word and you can know what the term means.  There will be an "audio" symbol to hear the pronunciation as well.  This is a great help.]

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2.       https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/cisplatincapecitabineandtrastuzumb.aspx

 “Cisplatin, capecitabine and trastuzumab (herceptin ®)

Cisplatin, capecitabine and trastuzumab (Herceptin ®) are chemotherapy treatments used to treat cancer in the stomach (gastric cancer). They are also used to treat cancer in the part of the gullet that joins with the stomach, if it has spread to other parts of the body (advanced gastro-oesophageal cancer).

On this page

• The drugs used
• How this treatment is given
• Possible side effects of this treatment
• Less common side-effects of this treatment
• Other information about this treatment
• References and thanks

This information should ideally be read with our general information about chemotherapy and the type of cancer you have…”

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3.       https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/biologicaltherapies/monoclonalantibodies/trastuzumab.aspx

Trastuzumab (Herceptin®)

“Trastuzumab is a cancer drug. It is usually used to treat a type of breast cancer called HER2 breast cancer. It can also be used to treat certain cancers of the stomach or the gullet (oesophagus) that have spread.

On this page

• What is trastuzumab and how does it work?
• When is Trastuzumab used?
• How is trastuzumab given?
• Possible side effects of trastuzumab
• Other information about trastuzumab
• References and thanks

Trastuzumab only works when the cancer cells have high levels of a protein called human epidermal growth factor receptor 2 (HER2). You will have tests first to find out whether trastuzumab is a suitable treatment for you. It may also be used to treat other types of cancer as part of a research trial.

It’s best to read this information with our general information about the type of cancer you have…

Stomach and oesophageal cancer

Trastuzumab may be used to treat certain people with advanced HER2-positive stomach cancer or cancer of the oesophagus where it joins with the stomach. In this situation, trastuzumab is given in combination with chemotherapy.

The National Institute for Health and Care Excellence (NICE) advises the NHS in England and Wales on new treatments. NICE recommends trastuzumab for people with advanced stomach or oesophageal cancer. The Scottish Medicines Consortium (SMC), a similar organization to NICE in Scotland, has not approved its use for these cancers. NICE’s guidance is supported in Northern Ireland.

We have more information on what you can do if a treatment isn’t available…”

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4.       https://www.nhs.uk/conditions/herceptin/

 “Herceptin is the brand name of a medicine called trastuzumab. It's used to treat some types of  breast cancer, oesophageal cancer and stomach cancer.

 Page contents

1. How Herceptin works
2. When Herceptin is used
3. How Herceptin is given
4. Side effects of Herceptin
5. Heart monitoring on Herceptin
6. Who may not be able to have Herceptin
7. Reporting side effects”

How Herceptin works

Herceptin can help control the growth of cancer cells that contain high amounts of HER2 (human epidermal growth factor receptor 2).

HER2 is found in all human cells. It controls cell growth and repair.

But high levels of HER2 are found in some types of breast, oesophageal and stomach cancer, which helps the cancer cells grow and survive.

These are known as HER2 positive cancers. About one in five breast and stomach cancers are HER2 positive.

Herceptin works by blocking the effects of HER2 and encouraging the immune system (the body's natural defenses) to attack and kill the cancer cells.

When Herceptin is used

Herceptin can be used to treat:

• early HER2 positive breast cancer, following surgery and/or radiotherapy and chemotherapy, to reduce the risk of the cancer coming back
• advanced HER2 positive breast cancer that has spread from the breast (metastatic breast cancer), to slow the growth of the cancer and increase survival time
• advanced HER2 positive stomach cancer that has spread out of the stomach (metastatic stomach cancer)
• advanced HER2 positive gastro-oesophageal cancer, affecting the area where the oesophagus (food pipe) meets the stomach

If you have breast, oesophageal or stomach cancer, tests will be carried out to check if your cancer is HER2 positive before Herceptin is offered…”

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 5.        http://www.christie.nhs.uk/media/2353/102.pdf

Peritoneal tumour service Hyperthermic intraperitoneal chemotherapy (HIPEC)

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6.       https://www.ncbi.nlm.nih.gov/pubmed/28643069

[My note:  This abstract only serves to show that we are conducting clinical trials for Esophageal Cancer patients as well.  I do know that it was several years ago now when one of our patients here had the HIPEC treatment performed at the University of Pittsburgh Medical Center in Pittsburgh.  Now I must say that his cancer was far advanced before he ever consulted with UPMC.  Had he had this procedure performed early on, it may have resulted in a longer life for him.  However, he did not live very long after that treatment.]  UPMC is noted for “forward” thinking and it doesn’t surprise me that they gave the patient the benefit of the doubt.  However, HIPEC is not one of the standard treatments for Esophageal Cancer, though I see it is being considered in clinical trials.  Here in the states, patients may opt for drugs not yet approved by the Federal Drug Administration for approved for actual accepted treatments.]

 “LESSONS LEARNED FROM A PHASE II CLINICAL TRIAL OF LAPAROSCOPIC HIPEC FOR GASTRIC CANCER.”

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7.        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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8.        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 here in America.]

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

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  9.        This is a letter my good friend whom I met here on the web when her husband Jim, age 48, was diagnosed with Stage IV Esophageal Cancer.  Sherri wrote this 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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10.     Sherri's post - what every Stage IVb patient needs to know

[My note here:  I agree with Sherri.  A “J” tube is preferable to a stent.  Most patients writing here have not had good experiences with stents.  Also if radiation is part of the regimen, it often shrinks the tumor in the Esophagus, and migration of the stent into the stomach can happen.  If the stent falls down into the stomach, the stent must be removed surgically.  And depending on the type of stent used, sometimes the tumor intertwines itself with the stent making surgical removal impossible.  That is why the “J” tube is best for  nutritional purposes.]

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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11.    https://sciencing.com/jejunostomy-feeding-tube-5809773.html

 “…Definition

The jejunum is a part of the small intestine, just below the stomach. A Jejunostomy tube, also called a J-tube, is inserted into the jejunum through the abdomen. J-tubes are used to provide nutrients to those who cannot ingest properly.

How J-tubes work

The purpose of a J-tube is to bypass the stomach and allow nutrients to enter the intestinal tract directly. Liquid nutrition, made of blenderized food, or a commercial formula, flows through the tube. The tube also allows delivery of medications.

Patients

J-tubes are used for individuals with severe anorexia, pancreatic disease, malabsorption disorders, liver failure and metabolic stress. Comatose individuals and those who are not able to eat because of head or neck trauma, may also use a J-tube…”

 

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