Just diagnosed w Stage 4 Esophageal Cancer-

RebeccaMukul

Hi all,

 

My partner has been diagnosed with Stage 4 Esophageal Cancer with small spots on the liver (2), some spread into to lymphnodes + some cardia. He is lucky in that he has Hers2 and can do herceptin. He has some difficulty swallowing but not much. He is not thrilled with the idea of chemo and is looking into a health treatment involving juicing, lots of raw vegetables, etc. for about 3 weeks. We have known about this for about 1.5 months, and every day is various levels of freak out/hope, etc.

For those who have tried the vitamin C, etc. for awhile- did it do anything, and how long did it take?

For those who have used Herecptin, can you do it without the chemo?

THank you so much for your time. Wishing you all the best.

LorettaMarshall

Dear Rebecca,

When patients present with a Stage IV cancer, and are given the alternatives, some choose to have chemo, while others say “no way.”    Cancer in both the Esophagus and the Liver certainly fits into the Stage IV category.  You didn’t mention exactly what is going on with his heart. When another person writes here, we shake our heads in amazement, and say, “Oh no not another case of Esophageal Cancer.”  This is disheartening, and I’m sad to have to say “hello” under these circumstances. 

Have you had a SECOND opinion in the last month and a half, since you indicate you’ve been tossed between “hope and fear” ever since then?  We know about those emotions. 

 Incidentally, I notice that in your remarks to “Chicko7” that your partner is being treated at Moore’s Cancer Center in San Diego.  http://providers.ucsd.edu/details/32659/hitendra-patel-cancer-la_jolla  - I note that Dr. Patel is an associate professor in the Department of Medicine, and instructs medical students, residents and fellows at UC San Diego School of Medicine.  Further, I see that Dr. Patel completed a fellowship in hematology and oncology at University of Pittsburgh (University of Pittsburgh Cancer Institute) and a residency in internal medicine at University of Pittsburgh (University of Pittsburgh Medical Center Shadyside Hospital). He earned his medical degree (MBBS) from Mahatma Gandhi Memorial Medical College, Indore in India. Dr. Patel is board-certified in hematology and medical oncology.  I have been a patient at UPMC Shadyside.

I am certain that Dr. Patel knows Dr. James D. Luketich.  Dr. Luketich is the pioneer of the Ivor Lewis Minimally Invasive Esophagectomy first introduced in the mid-1990.  The MIE as it is commonly called, was performed on my husband on May 17, 2003.  My husband was diagnosed with Adenocarcinoma @ the Gastroesophageal junction) (T3N1M0) and as of now, is into his 15^th year of survival.  We thank God for leading us to find Dr. Luketich.  Furthermore, I had my Cytoreductive Surgery @ UPMC (Passavant) for Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, on July 1, 2013, by Dr. David Bartlett.  If you were on the East Coast, we would say UPMC is the place to be! 

If you are going to consider a 2^nd opinion, for your information, there is a Dr. Ninh Nguyen who operates out of UCIrvine, who would be a good thoracic surgeon to consult.  He worked with Dr. Luketich in the 90’s when the MIE was first being introduced.  He and Dr. Luketich both have extensive medical articles that have been published in medical journals. 

• http://www.faculty.uci.edu//profile.cfm?faculty_id=5621

I see by Dr. Ninh Nguyen’s profile here at least 232 articles are listed, as well as having referenced articles in 31 different books.  So anyone else that may be reading this letter and lives on the West Coast, could do well to contact Dr. Ninh Nguyen. 

If I were you, I would at least explore all possibilities. I may as well tell you in the beginning, all that I write will not be pleasant to read and will not relieve your fears.   But I don’t want to mislead those who write here and have them think that there will be “no problems”—there will.  So I can read a letter like yours, and say to myself, “Nope I’m not answering this one—it’s a Stage IV patient.”  I have to tell you that letters like yours are the most difficult to answer for several reasons.  One being—patients are sometimes in denial and think, “This is a “biggie” but it can be fixed.”  Some are in absolute denial in the beginning but in time come to realize the extreme seriousness of this, the most difficult of all the EC stages of Cancer.  And I never know the disposition of the one to whom I am speaking.  Some are more scared than ever, while others say, “Thank you for all the helpful information.”  So I hope you will take this letter in the spirit in which it is written. I see that you have written 3 times today, so I will answer here.

While an Esophagectomy is not possible, often patients opt for chemotherapy and/or radiation.  The cancer will not “stand still” and if nothing is done to try to curtail its growth, it will progress rapidly and affect even more organs.

And as a Stage IV cancer patient myself, I can tell you, “Long term, there are no good choices” that will lead to a cure, short of an absolute miracle.  Miracles do happen, but meanwhile I’m trying to make the best choices that I have open to me.   So even “doing nothing” is a choice—but a choice we must make.  And so even with a Stage IV diagnosis, right out of the gate, I knew how awful chemo could be, but I was willing to “give it one try.”  And to be absolutely truthful, it was a nightmare, but I’m still alive 4 and ½ years later, although I’ve been through a lot “just stayin’ alive”.  So let’s just say, chemo can be very rough on the body, and at the same time, often it can kick back the cancer for a time.  So a Stage IV patient has to decide just how much of a fight they want to get into!  

Normally, chemo and radiation are prescribed as a “palliative” treatments most often for Stage IV EC patients.  Chemo is designed to circulate throughout the entire body in search of cancer cells while the radiation is aimed specifically at the tumor itself.  And as the cancer in the Esophagus grows, if no treatments are chosen, then eating will become a bigger problem.    And while your partner may not be “too thrilled” about chemo, it’s really the #l game in town for Stage IV EC patients.  What else will stop the tyrant for a time—nothing that I know about so far? 

As for the ability to swallow, often a patient’s physician will recommend the insertion of a “J” tube, so called because it is surgically implanted in the second section of the small intestine, the Jejunum.  In this way, the food bypasses the cancerous Esophagus altogether.  

  On that note, when my husband was discharged from the hospital after a successful Minimally Invasive Esophagectomy, he had a “J” tube.  All EC patients that undergo surgery usually have the “J” tube implanted as part of the surgery, because they will need it for weeks or months to come, once they are home.  We also had a “portable” pack that contained the formula “Osmalite” in our case.  We could go anywhere with it and not be confined to home.  And my husband hooked it up at night, and the feeding took place even while he was sleeping.  Now I don’t want to oversimplify the recuperative process, but I just need to say that a “J” tube has advantages over a stent or a feeding tube that is inserted into the stomach itself (G-tube) even for patients who have not had surgery. 

Since I’m not one that is into “alternative cures” for cancer, I don’t do “juicing.”  I will tell you that I personally know a husband and wife that were into “nothing but health foods” all their life, and now in the last year, both of them have been diagnosed with Stage IV cancers.  My thoughts on that are, if you like juice, then drink all you wish, but I haven’t seen any cancer facility that touts “eating the right foods or drinking the right juices or teas, or injecting scorpion venom” works to PREVENT or cure CANCER.”  I have included a couple of references relative to juicing in this letter.  Juicing comes second to actual food and the reasons are explained in those articles. 

            My friend, Sherri’s husband Jim, age 48, was an avid runner and ate all the right foods, and just out of the blue, with no prior symptoms, was diagnosed with Stage IV Esophageal Cancer.  During his treatments, she did fix a lot of fattening foods for him that helped him keep up his strength and he was able to keep his desk job, even though his physical strength waned.  There isn’t anyone that I know of that posts regularly on this link presently that “swears by juicing.”  So much for that.

And as for “lucky that your partner has HER2”, I probably wouldn’t use that adjective since those who test positive for Human Epidermal growth factor Receptor 2.    It is NOT an advantage.  It means that the patient actually has an oncogene that is much more aggressive.  They actually have an “over-expressive” oncogene that causes the cancer to spread more rapidly.   That is explained in one of the references below.  As many as 20 to 25% of Breast cancer patients, as well as Esophageal and Stomach cancer patients test positive for this particular gene.

Now our friend, Ed, who posts as “DeathOrGlory”, has had experience with Herceptin, but you must remember he also had chemotherapy along with that drug first.  Most likely he will share his own story as a Stage IV EC patient.  Herceptin is sometimes given as a “maintenance” drug even after chemo is completed, however, it is not intended to be used alone as a “first-line” treatment.  You can read about that more in the “ChemoCare.com” reference below.  Herceptin is often given along with the chemo regimen, but it is NOT a chemo drug itself. 

Since you’ve asked about “juicing”, I’ve included a couple of links relative to that subject, telling about the advantages, disadvantages and myths.

Seems to me the bottom line is that your partner must ask himself, “Just how much of a fight do I want to give this cancer?”  If he rules out chemo and/or radiation, what else is he considering as an alternative? 

Larger hospitals have more experience with difficult cases of Esophageal cancer, and are often much better equipped with top medical teams that work together to the best advantage for the patient.  Where he decides to go will determine his options.  You may be perfectly content to stay at Moore’s Cancer Center, but it’s all up to him.  It’s a gamble to be sure because none of us know when our time is up, but we can “give up immediately” or choose to “fight it till there’s no fight left in us.”  The determining factor for me will be when my quality of life is diminished by continuing one treatment after another without any prolonged quality survival time in between.  After all, the cancer is smart, and we can’t always figure out a way to “stay one step ahead of it—sure wish we could.”

My oh my, how we wish there were some good options for Stage IVs, but at this stage it’s all about the “survival of the fittest.”  I do hope your partner will have a SECOND opinion in any case, just to be certain you are at the best place to be.    That will erase a lot of “should haves—could haves—wish-I-had-done that” kind of hindsight thinking.  I certainly hope there will be some positive things your partner will consider.  Be sure you can talk openly and honestly with his doctor, and that he will know what questions to ask.  But having the best doctors you can find is the starting point.  I really feel inadequate to help, but I wish you well.  If along the way, you have other questions, some of us here will probably have already experienced what your partner is grappling with.  Cancer is a life-changing experience that affects so many in the family—and it hurts—pure and simple.  I’m really sorry to hear that cancer has now knocked on your partner’s door.  And I know that it has gripped your heart as well.  It is going to be an emotional roller coaster, so may as well buckle up.  I can tell you that from experience as first being a caregiver to my husband, and then as a Stage IV patient myself.

My advice—try to major on some things you can be thankful for—things that you can still do together—rather than sink into despondency lamenting the things you can no longer do.   Just remember that “Life isn’t about waiting for the storm to pass—it’s about learning how to dance in the rain!” 

Love & prayers,

Loretta

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1.        https://www.cancer.gov/types/esophageal

“…Esophageal cancer is a disease in which malignant (cancer) cells form in the tissues of the esophagus. The esophagus is a muscular tube that moves food and liquids from the throat to the stomach.

The most common types of esophageal cancer are squamous cell carcinoma and adenocarcinoma. Squamous cell carcinoma begins in flat cells lining the esophagus. Adenocarcinoma begins in cells that make and release mucus and other fluids…”

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2.        http://news.cancerconnect.com/cancer/newly-diagnosed/

“…Newly Diagnosed

A new diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Remember, very few cancers require emergency treatment; you have time to learn about your diagnosis and treatment options, ask questions, and get a second opinion. This section is designed to help you address your initial questions before you move forward with your treatment.
Newly Diagnosed Topics

       What is Cancer?...........Diagnosing Cancer………Introduction to Cancer Treatment……………Your Cancer Treatment Team………Your Support Team………….Optimizing Your Treatment………Questions to Ask

       A Word about Clinical Trials...........Getting a Second Opinion…………Who Should Get a Second Opinion?............The Role of Caregivers…”

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

(This is a trusted site that gives complete info relative to Esophageal Cancer.  Please note the separate links noted on the left hand side of this page.  This is an excellent research source that includes a list of questions you should “ask your doctor.”  Unfortunately, in the beginning we usually don’t know what questions to ask.  Many of us had never heard of Esophageal Cancer and didn’t know anyone who had been diagnosed with it.  So this is a good place if you wish to research this cancer.

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

“…Optimal treatment of patients with stage IV esophageal cancer often requires more than one therapeutic approach. Thus, it is important for patients to be treated at a medical center that can offer multi-modality treatment involving medical oncologists, radiation oncologists, surgeons, gastroenterologists and nutritionists.

There are currently no standard curative therapies for treatment of stage IV esophageal cancer. The predominant symptom of esophageal cancer is dysphagia, which simply means difficulty in swallowing food and liquids. There are specific treatments that can be administered that can result in short-term benefit and improvement in nutrition. Current treatment approaches are primarily directed at controlling the symptoms of cancer and prolonging survival. A number of treatment options are currently utilized alone or in combination to achieve optimal results…”

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5.       http://www.webmd.com/diet/features/juicing-health-risks-and-benefits#2

“Juicing for Health and Weight Loss

What to know before adding fresh juice to your diet.  - By Anna Nguyen

 

“…Fiber Factor

When you juice, you don't get the fiber that's in whole fruits and vegetables. Juicing machines extract the juice and leave behind the pulp, which has fiber…

Juicing for Weight Loss and Cleansing

Juicing might seem like a simple way to lose weight, but it can backfire.

On a juice-only diet, you may not get enough fiber or protein to make you full...Not getting enough protein could also mean you lose muscle mass.

The bottom line: It's too extreme, and the results aren't likely to last.

What about juicing as a way to detox or cleanse your body? “I haven’t seen any research or science paper to support that cleansing is happening from juicing,” Villacorta says.

Your liver and kidneys take care of that -- whether you're juicing or not…”

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6.       https://www.oncologynutrition.org/erfc/hot-topics/should-i-be-juicing/

“JUICING & CANCER

Question:

I’ve heard that juicing is an important part of a cancer-fighting diet. Should I be juicing? 

Answer:

Juicing (the process of separating the juice from the pulp of fruits, vegetables and plant foods) is a great way to add more servings of vegetables and fruits to an already-healthy diet. Juicing should not be used to meet basic nutrition needs as it significantly reduces the amount of fiber you get from a vegetable or fruit. This is true for people who are feeling well, are able to chew and digest their food normally, and aren't losing weight without trying.

If you are in active treatment, are having chewing, swallowing, or digestive problems, or are struggling with excess weight loss due to cancer and its treatment, juicing may be a good option for getting valuable nutrients into your body. You also may want to consider blenderizing your vegetables and fruits to make healthy "smoothies." Talk to a registered dietitian about how to do this in a way that will ensure you meet all of your calorie and protein needs, and are staying safe if you have swallowing difficulties.

If you currently eat five or more servings of colorful vegetables and fruits per day, then juicing to boost intake of these foods further can be a healthy option. For reference: A serving ranges from one-half to one cup of chopped vegetables or fruit.

Your first five servings of vegetables and fruits should come from whole foods, not juice, so if you’re not meeting this five-a-day goal already, do this first. Once you establish— and stick to—a habit of having five servings of vegetables and fruits per day, you can add in juicing.

Follow a few tips, and you can make the most of juicing:

• Focus on vegetables. For the healthiest juices, include more vegetables than fruits. Include one fruit to sweeten up your mixture, but make the other ingredients vegetables—they have fewer calories, so make for a healthier drink over all. For example, juice one carrot, a chunk of cucumber, a small beet, a piece of ginger, and a small apple.
• Drink what you’d eat. Juice packs a lot of nutrition—and calories—in a smaller volume than whole food. For example, you need four to six large carrots to yield eight ounces of carrot juice. Most people wouldn’t eat this many carrots in a sitting. Stick to juicing small quantities to avoid excess calories, which can contribute to weight gain
• Go Pro(tein). Have your juice with a serving of protein, and a little bit of fat. Protein balances out the carbohydrates in the juice, and fat helps your body absorb fat-soluble nutrients from the juice. For example, if you juice thing in the morning, enjoy it with Greek yogurt with some nuts and seeds sprinkled on top. Or have your juice with scrambled or hard-boiled eggs.
•  Embrace variety. Get creative with your juicing to avoid overdoing it on just a few specific nutrients. By mixing it up, you get the greatest variety of nutrients possible. You can even juice items you might throw away, such as broccoli stems.
• Count crucifers. Cruciferous vegetables include broccoli, kale, chard, bok choy, kohlrabi, Brussels sprouts, cauliflower, watercress, collard and mustard greens, turnips, radish, daikon root, and arugula. These foods help support our body’s ability to detoxify, but even healthful foods can be bad for health if eaten in excess. Having one to two serving of cruciferous vegetables per day is associated with decreased risk of several types of cancer and no adverse effects.
• Embrace variety, again! In the same way that you get different nutrients from different foods, you absorb different nutrients from the same food, when it is prepared differently. What you absorb from a cooked carrot is different from what you absorb from a raw carrot, which is different from the nutrients you absorb from carrot juice. Don’t rely on juicing for all of your servings of any one particular food, or you miss out on vital nutrition.

Remember, food first. Once you are meeting the five-a-day whole vegetable and fruit goal, try juicing to add extra oomph to your already healthful diet.”

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7.       http://chemocare.com/chemotherapy/drug-info/herceptin.aspx

Herceptin ® - Generic name: Trastuzumab

Chemocare.com uses generic names in all descriptions of drugs. Herceptin is the trade name for Trastuzumab. In some cases, health care professionals may use the trade name Herceptin when referring to the generic drug name Trastuzumab.

Drug type:  Herceptin is a monoclonal antibody. (For more detail, see "How this drug works" section below).

What This Drug Is Used For:

• Trastuzumab is used to treat metastatic (spread) breast cancer.  It is effective against tumors that overexpress the HER2/neu protein.
• As part of chemotherapy regimen for adjuvant treatment of lymph-node positive, HER2/neu protein positive breast cancer.
• Treatment of gastric (stomach) cancer 
• It is not known whether or not trastuzumab may be effective in other cancers that may also have this HER-2/neu protein, including ovarian, colon, endometrial, lung, bladder, prostate, and salivary gland tumors.

Note:  If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.

How This Drug Is Given:

• Trastuzumab is given through an infusion into vein (intravenous, IV).  The first dose is given over 90 minutes.  If well-tolerated subsequent maintenance doses may be given over 30 minutes. 
• The amount of trastuzumab that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition being treated.  Your doctor will determine your dose and schedule…”

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8.       https://www.youtube.com/watch?v=pCXiRE-4HzU

[My note:  This is a video by another doctor explaining what it means to be HER2 positive.  She is speaking specifically about Breast Cancer patients.  BC patients were first discovered to have this “over-expressive” (aggressive) oncogene.  But later it was also found that many Esophageal and Stomach Cancer patients also had this same type of over-expressive gene. Initially the FDA approved the use of “Herceptin” for BC patients, then when the EC patients were also found to have this gene, HERCEPTIN, was also approved for Esophageal cancer patients back in 2011.  So this just gives you a better understanding of how Herceptin works to stop the rapid growth of this particular cancer cell.]

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9.        https://www.cancer.org/cancer/esophagus-cancer/treating/targeted-therapy.html

Trastuzumab (Herceptin) - “…A small number of esophagus cancers have too much of the HER2 protein on the surface of their cells, which can help cancer cells to grow. Having too much of this protein is caused by having too many copies of the HER2 gene.

A drug that targets the HER2 protein, known as trastuzumab (Herceptin), may help treat these cancers when used along with chemotherapy. If you have esophageal cancer and can’t have surgery, your doctor may have your tumor biopsy samples tested for the HER2 protein or gene. Cancers that have normal amounts of the HER2 protein or gene are very unlikely to be helped by this drug.  Trastuzumab is injected into a vein (IV) once every 3 weeks along with chemo. The optimal length of time to give it is not yet known…”

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

Herceptin (trastuzumab) for HER2-Positive Breast and Stomach Cancer

 

Published on Oct 21, 2015 - Herceptin (trastuzumab) is an approved #targeted therapy 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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11.  This is one of Sherri’s letters for the “newly diagnosed”

"APRIL 15, 2010 - 6:29 P.M. - 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 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# 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 if 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. 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-diarrheal 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!

Hope this helps and remember that this is my opinion only. I am not a medical doctor, just an experienced Stage IV caregiver. Good Luck and may God Bless.

Sherri”

__________End of references_______________________

Deathorglory

Sorry to Hear Your News

Hello Rebecca,

I'm sorry that you and your partner find yourselves here.  Stage IV EC is not what you want to hear from your doctor.  I was stage IV my second time around (2011) after starting out stage III in 2008.  The 1st time I had chemo/radiation, then surgery then bonus chemo.  I tested cancer free and thought I was fine.  The 2nd time was a recurrence in a lung and I was given 7-8 months life expectancy.  Since surgery and radiation were not options, I was offered chemo and a clinical trial.  But I tested HER2+, so herceptin was added to the chemo instead of the clinical trial.  I was very lucky that herceptin had just been approved for metastatic EC a couple of months prior to my diagnosis.  While HER2+ status means that you have a particularly aggressive type of cancer, herceptin can be a powerfull ally in the fight against it.  

I was given biweekly folfox for 12 rounds and was given herceptin weekly.  The folfox was brutal.  My doctor said most folks don't do all 12 rounds b/c of the side effects and most stop after 8 or 9.  The side effects were, in fact, rough, but I was determined to complete the 12 rounds.  I'm convinced that doing the full course of treatment as well as the herceptin is why I'm still here almost 6 years later and testing clean.  I still get herceptin weekly (just got a refill yesterday).  There's no evidence that continuing on with it is effective in preventing another recurrence, but that's b/c there aren't any EC folks who have been on it so long.  Something worked really well for me and my doctor and I don't want to fix something that's not broken, so we continue on.  I don't know that herceptin alone would have done much/anything to fight the cancer off, but the combination with chemo has worked out well for me.

I don't believe that alternative therapies provide much benefit against cancer, but I wanted to make sure I tried everything I could to fight it.  I drank tons of tea for antioxidants and loaded (I mean loaded) the tea with fresh lemon for vitamin C.  I also saw somewhere that garlic could be beneficial, so I cooked with a LOT of fresh garlic.  My doctor saw something that said aspirin could be helpful, so I took an aspirin a day.  I don't know that any of those things did anything, and I'm positive they didn't do as much as the folfox and herceptin which actually have me in 5+ years of remission, but at least in my mind I was doing everything I could.  In general my thought about that stuff is that if your doctor oks it, why not add it to standard treatment, you're not hurting anything and it may provide some benefits, even if the benefits are only psychic.

Wishing you guys the best,

Ed

JC_17

Esophagus and stomach biopsy last Friday

Hello, I just joined b/c I may have esophagus and stomach cancer. Had biopsies last Friday, not sure until pathology completed, but am trying to prepare for the worst. That is what I always do!  Can anyone provide insight as to other possible diagnosi? If not, what other symptoms besides dysphasia might there be? I am a Parkinson's patient, Vietnam Agent Orange, and my family has history of cancer. My older sister just passed last week from liver cancer. Thank you!

paul61

Hello JC,

Hello JC,

There are a number of esophageal and stomach issues that can have dysphasia symptoms similar to esophageal cancer. Esophagitis, esophageal stictures, ulcers etc. The pathology from the biopsy is really the determining factor. Once that diagnosis has been made there are other tests that need to be done to define the extent of the cancer. But it sounds like you are early in the diagnostic process. I assume you had an endoscopy with biopsy. Sometimes the tumor is obvious at the time of the endospic exam. It sounds like yours was not; so there is reason for hope that it is something else, or if it is esophageal cancer that it is in an early stage.

Hoping you get good news.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

LorettaMarshall

JC_17 said:

Esophagus and stomach biopsy last Friday

Hello, I just joined b/c I may have esophagus and stomach cancer. Had biopsies last Friday, not sure until pathology completed, but am trying to prepare for the worst. That is what I always do!  Can anyone provide insight as to other possible diagnosi? If not, what other symptoms besides dysphasia might there be? I am a Parkinson's patient, Vietnam Agent Orange, and my family has history of cancer. My older sister just passed last week from liver cancer. Thank you!

JC~Bless U 4 serving N Vietnam~Hope tests for EC R negative!

Hello “JC”

First of all, sounds like you are very familiar with the old “Morton Salt” logo, “When it rains—it pours!”  I’m sorry to learn of your other medical problems.  And added to that you’re grieving over the loss of your sister to Liver cancer.  You’re certainly carrying a heavy load right now.  Mercy me, you’ve had enough problems already so I hope you won’t spend too much time attempting to “prepare yourself for the worst.”  Actually, I know what you mean though.  You want to be able to accept a diagnosis for what it is.  So rather than give you a long explanation of what an Esophageal Cancer diagnosis will involve, for the time being, I will just give you some links to others that I have written to here on this site.  So below my name, you can read several if you wish.  

However, at this point, as much as you can, try NOT to rush ahead of the diagnosis, although that is difficult to do, once you have a reason to think you’re not going to like what the doctor says.  IF you are diagnosed with Esophageal Cancer however, you most certainly need a SECOND OPINION.  Naturally, we would wish that if you should be diagnosed with Esophageal Cancer that it will be one that is “operable”.  That would be the “best of not a so good diagnosis” because the stages run from “in situ” to Stage IV” in situ being the very earliest stage.  Obviously we wish that it is neither of those.  Most insurance companies will pay for a second opinion.  The best place to go would be to a major medical facility where Esophagectomies are performed on a “routine” basis, and certainly one where the Ivor Lewis Minimally Invasive Esophagectomy is performed.  This is totally laparoscopic.  There’s no need to “open up yourself to a more invasive operation” than is necessary.

If I only had one thing I could say to a patient that had just been diagnosed with Esophageal Cancer, it would be to have a SECOND opinion, and to go to a major medical facility that is well equipped to perform the MIE.  The advantages are multiple, but you can cross that bridge only when you get to it.  None of us can tell you exactly what you will feel, or respond to, but we can tell you the proper tests, the usual treatment regimen, etc.  And that of course, will depend on the “Stage of Cancer” IF indeed that is the case. 

And by all means if you are diagnosed with Esophageal Cancer, be certain that you are tested to see if you are HER2 positive.  Some cancer patients have an “over-expressive” oncogene that results in their cancer spreading more rapidly than if they test negative.  So be certain that is among the tests that you are given IF indeed you do have Esophageal or Stomach Cancer.

Furthermore I didn’t know until recently that there is a “Patient’s Advocate” link, and the organization is based right here in Tidewater, VA.  So I will give you that link as well.  And I might suggest one more thing.  If and when you need to touch base with any of us again, it would serve you and us well if you would put your remarks under your very own “new topic discussion”.  That way all the correspondence could be kept in one place.  It becomes difficult for me, at least, to keep up with several patients who are talking about different problems on the “same” topic line. 

That said, all of us here hope that the upcoming tests will NOT be diagnosed as cancer.  You’ve been through enough already.  But we’re here if you need to talk more.  Wishing for you a “good report”.  Quite naturally that would mean “NO CANCER”. 

Loretta (Wife of William who was DX w/Adenocarcinoma @ the Gastroesophageal junction (GE), Stage III (T3N1M0) MIE @ UPMC May 17, 2003 & still cancer free today—Thank God!)

______________________________________________________________________________

P.S.  Separate from the issue you wrote about, let me thank you for fighting in that awful hell hole known as Vietnam—might have come out better if the battle had not been commandeered from Washington instead of on the battlefield where the actual enemy was.  At the end of McNamara’s life he issued an apology for the decisions he had made, but the “Vietnam wall” is forever a place to remember things we wish we could forget.  But too many came home, never to be the same physically and or emotionally, and what did you get for it?  Insults and ungratefulness, so as for me and my husband, thanks for putting your life on the line for us who were safe here at home and just watching it all unfold in a land far away!  This was a national wound that will never heal in my opinion.  But that’s not the reason for my writing.  Incidentally, as yet Uncle Sam has not added Agent Orange to the list of coverable treatments since they have not established conclusively that it is a cause of Esophageal Cancer.  However, if you find that you have EC, I would find some advocate that could speak on your behalf.  And that’s about all I know about that.  But I do know of others here who believe firmly that this was the cause of their cancer.  Hopefully, real changes are coming at the VA that will address every need that our brave men and/or women deserve. These two links are McNamara speaking re Vietnam War.

https://www.youtube.com/watch?v=0enCCGBW3xc

https://www.youtube.com/watch?v=kbJA6L-_dFs

I hope these remarks don’t raise too much additional trauma in your life, it is intended to tell you how much we appreciate your sacrifice and that of your family.

_____________________________________________________________________

1.       Now here is answer I wrote to “Ellie1229

https://csn.cancer.org/node/310214

_____________________________________________________________________ 

2.       This is an answer to “Pamellaann5943”

https://csn.cancer.org/comment/1545272#comment-1545272

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3.  http://www.patientadvocate.org/help.php/index.php?p=691

This is a foundation that lets a patient know what their rights are.

___________________________________________________________________

________Enough for now and I hope you never have to experience EC_______________