Huband's Advanced Esophagael Cancer

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Krusader
Krusader Member Posts: 1
in Esophageal Cancer #1

My husband's surgeon gave him just weeks to survive his advanced sqaumous cell esohageal cancer.  One doctor is considering a stent and radiation.  He has lost a tremendous amount of weight - over six feet tall and only 111  lbs.  No pain, and sticking to his usual schedule.  He is drinking Essiac tea at present.  To see the doctor again at end of week.  Not sure if further traditional treatment will be positive.  He can still swallow small amounts of liquids.  Wife

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  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
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    "Wife"~Can U B more specific re exact stage & what docs U have?

    Dear “Wife”

    From one wife of an Esophageal Cancer patient to another, I empathize with you and am saddened to learn of your husband’s diagnosis.  I’ve always said, “When my husband has cancer, I have cancer.”  Little did I know when he was diagnosed with a Stage III Esophageal Cancer back in 2002, that ten years later, I would be diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV.  So believe me, I know what it feels like to have a terminal cancer diagnosis.  I say that only to let you know that many of us who write here have wrestled with cancer, either as a patient or as a caregiver.  There are no words that adequately describe this emotional rollercoaster.   

    With the little information you’ve shared with us, I’m not certain of how long your husband has been sick.  When was he diagnosed and have you had a SECOND opinion?  It sounds like you’ve talked to more than “one” doctor.  Is he being seen at a major medical center where Esophageal Cancers are one of their “specialties?”  This makes a huge difference.  May I ask, “Who is not sure if further traditional treatment would be positive?”  Are you saying one of the doctors is not sure, or are you not sure?  If you are not sure, then “hop on board”—none of us are assured of anything after the initial diagnosis. 

    If it is advanced Squamous Cell Esophageal cancer, what do you mean by advanced?  Has it spread to another major organ?  If so, that changes the picture.  However, Stage III Esophageal Cancer is also considered advanced, but comes with a possibility of surgery after pre-op chemo and radiation as a general rule. 

    Granted this is a tragic and sad state of affairs, but there have been many Stage IVs here that have chosen to opt for chemo and/or radiation and a feeding tube, like the J-tube, and are taking the attitude, “I’ll give it a try before I give up.” 

    As for a stent, many on this site have not been happy with their stents.  Sometimes it does not solve the problem for eating.  Sometimes the tumor becomes entwined with the stent and is not removable.  Other times when radiation is being given, the tumor shrinks and the stent migrates into the stomach and has to be surgically removed.  I know this all sounds scary, as if you’re not already upset enough. 

    Have doctors mentioned the insertion of a feeding tube?  Why not rather have a J-tube surgically placed in the second section of his small intestine?  That is often done and this is what has helped ever so many patients.  Granted when Esophageal Cancer patients present as a Stage IV in the very beginning, that means that the cancer has already spread to lymph nodes near another major organ or cancer is already in another major organ as well.  So the treatment prescribed would be according to the Stage.  Can you tell us more about exact tests that have been done to reach that caused “one” of the doctors to give your husband only “weeks,” while seemingly another doctor wishes to opt for a stent and radiation?  Knowing that often many “first” opinions are wrong, I certainly hope you have had a second opinion.  Without more info, I’m not quite sure that you want to settle for “weeks to survive.”

    While we wish we could always give a “Don’t worry be happy” letter to everyone that writes here, such is not the case with this cancer.  But at the same time, we don’t want to see one settle for less, if more can be done to provide the patient some quality of life.  I know that there are Stage IV Esophageal Cancer patients that read this site that will tell you that even though their cancer, absent a pure miracle, is terminal at some time going forward, they have opted to do all within their power to “stay a little longer to be with those they love so dearly.” So perhaps some of them will be along soon to offer you their opinion.  It goes without saying that we are sorry that your husband is sick, and we know the desperation and confusion and sorrow that comes along this road.  We have all experienced it.  That’s why we want to help others along the way if and when we can.

    Below my name will be just a few references.  Among them will be a letter from a dear friend named “Sherri”.  She no longer posts here, but has given me permission to share any of her writings anytime I think they might be of help.  Although her husband Jim was only 48 when he was diagnosed, he lived 2 years after his diagnosis and she would “fight the fight” yet again if she had to even knowing the difficulties this cancer brings.  But the big question for you and your husband at this point would be, “Are we up to it?  Or is his health so fragile, it would be futile to attempt any kind of treatment.  I, for one, am thankful that you have written us because perhaps we can be of some help, hope or comfort. 

    Praying for you to have the guidance you need for such a time as this.

    Loretta (wife of William-diagnosed with Adenocarcinoma at the GastroEsophageal junction (GE), Stage III (T3-N1-M0)-pre-op chemo/radiation then an Ivor Lewis Minimally Invasive Esophagectomy May 17, 2003 @ University of Pittsburgh Med. Ctr. By Dr. James D. Luketich).  William is still alive and well. 

    _____________________________________________________________

    Incidentally, it’s okay to include as much liquid as you can in your husband’s diet, but the FDA has not endorsed Essiac tea as far as a treatment for Esophageal Cancer is concerned.  Often people writing here will say that they drink this tea.  They declare that they benefit by drinking it.  However, according to this site, “Essiac” tea falls under the category of a “food supplement” and is not advertised as a treatment for Esophageal Cancer.  I note that the place where it can be purchased from Canada comes with a disclaimer that reads thus:

    1.  http://www.essiactea.org/

    “*Disclaimer: This statement has not been evaluated by the food and drug administration. Information and products shown are not to be used as medical advice and / or to be used in place of medical treatment of any kind.

    All information and products are to be used ONLY as a food supplement and must not be used to treat, mitigate or cure any symptom, illness or disease. True Canadian Health Products Inc. will not make any medical claims for products listed on this site. Information on this site is only for public knowledge.”

    __________________________________________________________

    2.  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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    3.  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

    (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.  Note that there are “stages”.  But at this point, you haven’t told us what types of tests have, or have not, been performed, so I trust that this will help greatly.

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    5.  http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/stage-iii-esophageal-cancer/

    “…For patients with stage III esophageal cancer, there are essentially two currently available treatment choices: chemotherapy and radiation therapy before surgery or chemotherapy and radiation therapy without surgery. Surgery alone is not usually advised for patients with stage III esophageal cancer except as necessary for palliation for difficulty in swallowing. There may be some exceptions to this recommendation for patients with stage III cancer who only have minimal lymph node nodal involvement with cancer or those with minimal spread of cancer to adjacent structures…”

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    6.  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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    7.  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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    8.  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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    9.  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 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 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
    Deathorglory Member Posts: 364 Member
    #3
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    Sorry to Hear Your News

    Dear Krusader,

    I'm so sorry to hear your news.  You didn't provide a lot of information and I don't want to make assumptions, so I'm limited in what I can offer you.  I hope you have gotten or are getting a second opinion.  I also hope you are going to a first class cancer center.  There's a difference between doctors and hospitals.  Some are simply better than others.

    I'm a stage IV person (was stage III the 1st time, then it recurred in a lung) who was given just a few months life expectancy when diagnosed.  I got very lucky and was able to be treated with a newly approved drug (herceptin) along with my chemo.  The combination worked perfectly and I've been doing pretty well for over five years now.  

    I wish there was more I could offer you.  Know that you're in my thoughts and I'm wishing the best for you and your husband.

    Ed

  • RebeccaMukul
    RebeccaMukul Member Posts: 3
    #4
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    Diagnosis Stage 4

    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. fo 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.

    Rebecca

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