Just diagnosed...

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jckwilliams
jckwilliams Member Posts: 3
in Esophageal Cancer #1

Hi...my husband was just diagnosed (about 2 weeks ago) with stage 4 esophageal cancer.  I'm in shock.  He's so healthy and we thought he had a simple case of acid reflux.  We've found an oncologist but everything is moving at a crazy pace and I don't even know where to start.  We tried to get him into a clinical trial but found out he wasn't eligible because he's HER2 negative...what in the world does that mean?!  We are waiting to start chemo. My world is spinning and it's really overwhelming.  I don't even know what questions to ask because I'm suddenly expected to be knowledgeable about some cancer I had never heard of before mid-February!  Friends want to provide support but I don't even know what support I need.  I hope there are others out there who have felt the way I do.  I welcome any thoughts...

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  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
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    jakwilliams~Exhaustive info 4 U including facts re Herceptin

    My how your words took me back to the first day I received a call from our gastroenterologist.  My husband had just had an “upper endoscopy” the day before because of a persistent HICCUP that I noticed that seemed to be habitual.  It was about 2:30 P.M. when the phone rang the following day.  I answered.  The conversation went just like this:  “Mrs. Marshall – I do wish you had stayed around yesterday.  I needed to talk to you.  Your husband has cancer!”  So I, and many others here who will read your letter identify completely with having the wind knocked out of you, a racing heart and head-spinning shock wave that suddenly thrusts you into the world of the “unknown.”  And CANCER to me was usually synonymous with death—may as well be honest.  Being a realist sometimes doesn’t allow for a “softer side” of me to surface since I’ve come to know more about Esophageal Cancer than how to spell it.  I had to ask the doctor how to spell Esophageal.  And an endoscopy? What in the world did that involve?  The only word I was sure of was how to spell “cancer.” 

    Then all of a sudden you need a desk-size calendar to fill in all the appointments you will be having.  Your days will be rearranged for you, and you will be meeting “strangers” you’ve never met before, and your husband’s life is going to be in their hands.  (Now we’re not discounting God Who knows everything that’s going to happen.  But He has given us some good doctors and hospitals down here this side of Heaven.)

    I like your honesty when you say you don’t even know what support you need.  I will tell you that one kind of support you need will be friends that aren’t afraid of talking about the word cancer, and will stick with you for emotional and physical support.  My husband and I made it a point of telling our friends ourselves.  I know that before we entered the world of cancer we didn’t have a clue as how to best approach a friend or even a family member once we knew they had been diagnosed with cancer.  We thought to ourselves, “What should we say when we meet them the next time?  Should we bring it up, or say nothing unless they say something?

    Now, by reason of years of experience, I have another problem.  Just how much do I not say?  Is this person a realist and is ready to deal with reality, or are they in a stage of denial?  I’m the type of person who wants to know “the good, the bad and the ugly.”  But you’re right.  You don’t even know what questions to ask—got news for you—neither does any of us at the beginning unless we are in the medical field and already know something about Esophageal cancer.  So when I used the letters EC, just know it stands for Esophageal Cancer.  And just so you know, no question is too dumb to ask.  I think the dumbest thing is to ask no questions!  So my style is to try to help the person find answers to the questions they are asking.

    Now I will also tell you, that as a Stage IV EC patient, that means that the cancer has invaded more than one major organ.  Usually chemotherapy and radiation are prescribed, but most often no surgery is the rule.  That doesn’t mean that you’re hopeless and may as well not try to fight it.  We have one person here who is actively posting.  He goes by “DeathOrGlory”.  He was first diagnosed with a lesser stage of EC, had successful surgery, and then had a recurrence.  He is on a maintenance drug HERCEPTIN because he has been tested and found to be HER2+.  I’m certain he will be of great help.   He is now into his 5th year of survival, and that is the kind of news you want to hear.  I have a friend in town who also has Stage IV EC and she’s been here going on 6 years.

    FYI, HER2 is an abbreviation for human epidermal growth factor receptor 2.  You will see a link below along with a video as well as printed articles explaining this condition.  Basically, all EC patients should be tested to see if they possess a certain type of cancer gene that multiplies more rapidly than other cancer cells.  All EC patients should be tested, but all will not be found to possess this gene.  And that’s a good thing.  If one is HER2+ that means that they have a gene in their body that “over expresses” itself and causes the cancer to spread more rapidly.  The Herceptin is designed to “tamp down” that activity, and has been found to be very effective.  Believe me, you don’t want your husband to have it.  But a more thorough explanation can be found below my name.

    As for my husband, William, he was diagnosed with Stage III EC, Adenocarcinoma at the GastroEsophageal (GE) junction.  He was able to have pre-op (neo-adjuvant) chemo of Carboplatin and 5FU plus 25 treatments of radiation.  Chemo circulates throughout the entire body, while radiation is aimed at reducing the size of the tumor.  When my husband was first diagnosed at age 65, back in 2002, there was no “targeted radiation.”  By that I mean that today doctors are able to pinpoint areas to be targeted for radiation without damaging all the delicate tissue around the tumor.  We are blessed that he my husband is now in his 14th year of survival. 

    As a Stage IV Ovarian Cancer patient myself, (diagnosed in Nov. of 2012) I’ve had targeted radiation on tumors on the Caudate lobe of my Liver.  It was totally successful, and I was so thankful to be able to have that procedure.  So chemo kills cancer cells while at the same time radiation is shrinking the size of the tumor.  When the tumor shrinks, that often enables the patient to be able to swallow better and have a more complete diet.

    So at this point, I suppose the best thing I can do it provide you with some reputable medical sites that will help you immensely, and that will bring you up to speed in no time.  You will want to be certain that every possible test that needs to be done will be done.  And among the first things I would do would be to have a SECOND opinion.  If your husband isn’t going to be eligible for surgery, then you want to be absolutely certain of the experience level of the oncologist that you select.  You do have choices you know, and most insurance companies will gladly pay for a 2nd opinion.  And at the least, if both doctors agree on the proper method of treatments, then that will be of some consolation.  “Two heads are better than one.” 

    So we can be of help in helping to research the reputation of the medical team that you have chosen, if you wish to tell us where your husband is being treated, and whom you have “found” that is thoroughly knowledgeable in the field of Gastroenterology and GI surgeries.  For instance, are you at a medical facility where Esophageal Cancers are one of their specialties?  Or you somewhere that the oncologist is “jack of all trades” and “master of none?”  Some patients are too timid to ask questions and settle for less than the best as relates to doctors and treatments. And by all means, don’t think twice about “offending” the oncologist by telling him you want a 2nd opinion.  Anyone confident of his/her ability will not be offended by having his opinions verified by another expert in the same field.  Don’t be timid.  Do ask questions.  And I would start now by taking notes as you research the references below.  Write down your questions and expect an answer.  Your husband’s life is on the line, and if the doc is too busy to answer your questions, find someone who will treat you like you’re #1.  They do exist you know.

                So since I’m known to “overload” newbies, I will just do it yet again.  Below, I’m going to give you several references and when you finish your “homework” assignment, you will know more than you ever wanted to know, but at least you will be prepared to enter into this new frightening world without seeming to be blindfolded.  I often equate the “newbie” experience based on our own introduction in the “C” world, as that of the game, “PIN THE TAIL ON THE DONKEY”.  As for us, we felt like we had on a blindfold on, and were being spun around from one place to another—never knowing where we would end up. Thankfully, ultimately we “pinned the tail on the donkey in the right place!” 

    In our case, we had a 2nd opinion at the University of Pittsburgh Medical Center in Pittsburgh.  After pre-op chemo/radiation my husband was able to have an “Ivor Lewis Minimally Invasive Esophagectomy.”  This is the latest procedure—is totally laparoscopic—and has been around since the mid 90’s.  This is the modus operandi at UPMC now, and rarely do the surgeons have to revert to an older, more intrusive surgical procedure that prolongs the healing process.  It is called the MIE for short.  You will hear about that even though if your husband is properly tested and still is a IV, this will not be the procedure for him.  I say that with sadness because I wish he could have an earlier stage, even Stage III.  The earlier one is diagnosed with EC, the better the chances are of no recurrence.  Both Stages III and IV are advanced stages of EC.  But are you absolutely certain it is Stage IV?  To what other organ has it metastasized?  And what about a 2nd opinion?

    • Although you will see that I’ve listed a great many references below, perhaps you would like to start with this letter to “Pamellanne” who wrote in to say that her son-in-law had just been diagnosed with Stage IV Esophageal Cancer.  So here is that link.  I will warn you that it will take a long time to read through those references, but you will understand what Esophageal Cancer is all about.  Here is my answer to her.  http://csn.cancer.org/comment/1545272#comment-1545272

    But below my name here, I have included lots of references as well.  Some may be duplicates of what I’ve written to Pamellaann, but I’ve given you several articles on Herceptin and its application as related to Esophageal Cancer.  It is separate from the chemotherapy drugs, of which all can be found on the https://www.Chemocare.com website.   So for now, I will close and say that I understand completely the “storm” that you are going through at this time.  I wish you every success.  It’s a rough and rocky road but others have gone before you and will be able to help along the way.

    May God bless you all,

    Loretta (William’s wife)

    1. https://www.youtube.com/watch?v=I3pJSVoq_Cc

    Just an interesting video by Diana Sawyer discussing Esophageal Cancer and a different kind of preliminary test! 

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     2.  http://news.cancerconnect.com/clinical-trials/

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     3.  https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/results?protocolsearchid=6194122

    For starters this link from the “National Cancer Institute” will serve to let you know that there is more than one type of clinical trial being conducted for Esophageal Cancer.  I see by this web site that there are at least 36 clinical trials taking place around the country.

    There are sometimes clinical trials that only Stage IV cancer patients are eligible for.  Now personally, there is one I would not be interested in participating in—that being a blind study where one patient receives the real medication while the other receives a placebo. 

     Secondly, you should note that a patient having presented with a HER2 positive factor in addition to the diagnosis, is not the only criteria for entering a Stage IV clinical trial for Esophageal Cancer.  There are certain stipulations for certain trials.  Some require not having had previous chemo therapy for instance.  Clinical trials are not available at all medical facilities.  Moreover, there are at least 3 phases to any clinical trial—except if the results are so negative before the 3rd phase that sometimes the trials are discontinued.  Even then, the results of a trial having completed 3 phases does not always find something that is worthy of approval by the FDA (Federal Drug Association.)  So don’t hang your hat and count yourself out of all trials.  Moreover, I doubt that your husband has had time to successfully complete all the necessary tests to ascertain the proper staging of his cancer at this point. 

    So for your information, this link will explain what being “HER2+” is all about.  All patients that have been proven to have Esophageal Cancer should always be tested to see if they have a special gene that enables the cancer to spread more quickly. 

    So when you say, “You’ve found an oncologist”, perhaps you might want to seek a SECOND OPINION, especially if he/she is ruling out the possibility of a clinical trial on the basis of one criteria alone—that being that your husband needs to have a cancer gene that rapidly divides and makes the cancer spread more rapidly. 

    __________________________________________________________

    (***My note regarding article below:  This article is speaking about Breast Cancer patients.  Originally it was thought that this “over active” gene was something specific to the diagnosis of BC patients.  Then as time went on, it was noted that many Esophageal Cancer patients were testing positive for it as well.  So now EC patients are tested for this, and it is not something that relates only to BC patients.  FDA has approved its use and insurance should pay for it.  This link explains what it means to be HER2+.

    It is actually good if your husband has NOT tested positive for it.  If one tests positive, that means that they have a gene that multiplies the cancer cells more rapidly.

    And as for that, you are so early on in testing for EC and staging it, has he had this test already? This is a good explanation of HER2.  All patients should be tested for it, but some doctors do not order it unless the patient happens to know about it and mention it.  However, a good doctor will know to test the patient for this.)

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

    HERCEPTIN

     “Your doctor has recommended a medication called Herceptin as treatment for your breast cancer. This information sheet provides a brief introduction to Herceptin and explains the common side affects you may experience. This does not mean you will definitely get them. It is also possible you may experience a side effect not mentioned here.

    What is Herceptin? It is not chemotherapy or a hormone therapy.  It is called a monoclonal antibody which utilizes the natural immune system to kill tumor cells.

    Although cancers grow mainly beyond normal growth control, they are sufficiently similar to the own body’s cells to enable them to hide from the immune system (the body’s defence mechanism against “foreign” attack).

    There are, however, some subtle differences between cancer cells and normal cells. Some of these differences may be detected with special sensitive laboratory tests. In the case of breast cancer there may be too many copies of a cancer-causing gene called an oncogene. This oncogene called HER2 is part of a family of genes called c-erbB-2 (otherwise known as her-2-/neu).

    Each HER2 gene results in the expression of a receptor on the surface of the cell. If the gene makes too much receptor, it is referred to as being "over expressed".  Cells that over express too much of the HER2 gene can be a specific target for therapies such as Herceptin. Technology now exists to make antibodies in the laboratory called monoclonal antibodies. Specific antibodies have been made to detect and attach to the HER2 receptors. The antibody is therefore known as anti-HER2 called trastuzumab or its commercial name Herceptin…”

    5. https://www.youtube.com/watch?v=Q3Tzc3jGt3U

    Excellent video explaining that HER2+.  HER2: Abbreviation for human epidermal growth factor receptor 2. HER2 is a transmembrane tyrosine kinase receptor and is expressed by, and involved in the growth of, some cancer cell

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    6.http://www.gastrojournal.org/article/s0016-5085(08)01431-5/fulltext

    HER2 Amplification in Micrometastatic Esophageal Cancer Cells Predicts Prognosis

    ___________________________________________7.  https://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm230418.htm

    FDA Approves Trastuzumab (Herceptin)

    “On October 20, 2010, the U. S. Food and Drug Administration granted approval for trastuzumab (Herceptin), Genentech, Inc.), in combination with cisplatin and a fluoropyrimidine (capecitabine or 5-fluorouracil), for the treatment of patients with HER2 overexpressing metastatic gastric or gastroesophageal (GE) junction adenocarcinoma, who have not received prior treatment for metastatic disease…”

    _______________________________________________8.  http://www.altabatessummit.org/technology/eus.html

    “…What are the Benefits of EUS?

    Endoscopic ultrasound allows physicians to get in very close proximity to the organ, providing a much wider view with very detailed images that cannot be seen with a CT or MRI scan. Because the EUS scope has a video camera on it, endoscopic evaluations provide a digitally superior image of the area of concern. In conventional endoscopy, the gastroenterologist can only view the innermost lining of the digestive tract, or the wall. The addition of ultrasound allows the physician to see beyond that wall to visualize all five layers of the digestive tract as well as surrounding tissue and organs. This means that an abnormality below the surface of your digestive tract wall—such as a growth that was detected at a prior endoscopy or under x-ray, or a suspicious mass on one of your internal organs—can be further evaluated under EUS…”

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    9.      http://news.cancerconnect.com/esophageal-cancer-overview/

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    10.  http://www.medicinenet.com/cancer/article.htm

    All about cancer and how it develops.

    ________________________________________11.  http://www.webmd.com/cancer/features/cancer-when-do-you-need-a-second-opinion-and-why?page=2

     Everyone should have a SECOND OPINION.

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    12.  https://www.youtube.com/watch?v=FvgEaDVCKfA

    A 4-min. video explaining types of Esophageal Cancer.

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

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     14.  https://www.cancer.gov/types/esophageal/patient/esophageal-treatment-pdq


    General Information about Esophageal Cancer

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    15.  https://www.cancer.gov/publications/dictionaries/cancer-terms


    The NCI Dictionary of Cancer Terms – You can find any term here and listen to the pronunciation.

    __________________________________________________16.  http://news.cancerconnect.com/newly-diagnosed/questions-to-ask/


    Questions to Ask - Questions to Ask Your Doctor about Cancer Treatment

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    17.  https://old.cancer.org/acs/groups/cid/documents/webcontent/003098-pdf.pdf

    What is cancer of the Esophagus?  Tests to determine stage included in this article.

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

    _______________End of references aka "homework assignment" Smile_____________

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #3
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    Sorry You Find Yourself Here

    Hello,

    I'm sorry to hear your news.  Unfortunately, acid reflux is too often a path to EC.  That's how I started, too.  Acid relux led to GERD, led to Barrett's esophagus led to EC.  You said your husband is stage IV, but mentioned no specifics.  Obviously, mets to brain, liver and lung is a lot more dire than spread to lymph nodes.  You mentioned that you have found an oncologist.  I hope you've taken the time to find a good one at a good cancer center.  This is not a sprained ankle that you just get taken care of at the closest hospital.  It's worth it to find folks who deal with EC for a living.  You're likely only going to get one chance at this.  By mathematical rule, half of all doctors and hospitals are below average.  Please find the better ones.

    If your husband wasn't eligible for a clinical trial b/c hes HER2 negative, that just means that the trial was only for HER2+ folks.  There should be other trials out there that he'd qualify for; most folks are HER2 negative, so most trials are for HER2 negative people.  When I was diagnosed with a stage IV recurrence in 2011 (was stage III the 1st time) I was told that surgery and radiation weren't options.  I was going to be given chemo (folfox) and told that I could join a clinical trial.  It turned out that I tested HER2 positive, so I went on herceptin instead of the trial.  Fortunately, it had just been approved for use with EC.

    I know how overwhelmed you feel.  I wanted to take the time to make decisions properly, but metastatic cancer is obviously a very time sensitive disease that you want to address quickly.  Everything was in a swirl for me and I didn't like my original options.  I figured, hell, I have two lungs, just take the one out.  What's more radiation going to do, kill me?  I'm being given just a few months to live anyhow, so what's the harm.  Turns out things are more complicated than that and that's why top flight oncologists make a lot more money than I do.  I went to Johns Hopkins for a second opinion and was told that my doctor had me on the best possible course of treatment.

    You say that you don't know what kind of support you may need.  Probably the most important is that you'll want folks that you can talk to.  You'll likely want folks you can talk to openly about cancer and related things as well as people that you can talk to about ordinary things to give your mind a rest for a few minutes.  You might need some help with transportation (you're going to have A LOT of appointments and you might not be able to make them all), you might need some help around the house (who's going to shovel snow or mow the lawn or walk the dog now?)  

    It all is so overwhelming, but somehow folks figure out a way to muddle through.  You will too.  Please check in here as you go through your journey, there are people who are able to help you out, even if only to listen to you vent.

    Sorry to meet this way,

    Ed

     

     

  • jwmarx
    jwmarx Member Posts: 3
    edited March 2017 #4
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    I Might Be Able To Help

    I've survived Esophageal cancer for 3.5 years now, it was recurrent a year ago, I had the surgery, now it's back in the liver. I've been through all the treatments and have Stage IV metastatic cancer, but still going strong. J. Marx

    Please contact me at gethealed.jm@gmail.com

  • jckwilliams
    jckwilliams Member Posts: 3
    edited March 2017 #5
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    Thanks!

    Thanks to those who commented with all of the information!  It's so helpful...and I'm so happy people are out there listening to use "newbies" vent!  It's all still overwhelming and I'm learning a lot about my ability (and sometimes lack of ability!) to be a strong caregiver.  His stage IV was confirmed through a liver biopsy so his tumor is in his lower esophagus and stomach and has spread to his liver and lymph nodes.  My husband received his first chemo treatment yesterday.  We are fortunate to live in NY and getting our treatment through Sloan Memorial Kettering so we are in good hands.  Day one was fine...day 2 was a full day of vomiting and not eating.  We are very concerned with eating and fluids so we are looking into a feeding tube although we hope he can hold down solid food and liquid.  He's so mentally, emotionally, and spiritually ready to fight this cancer.  We just need to get him back to his physical state so he can really fight.  He came home with the chemo pump and we get disconnected tomorrow...then back again in 2 weeks.  So other than the vomiting, he is also having an extreme reaction to cold (guess that's a common side effect).  He has to wear gloves to take something out of the fridge.  Of course, being in NY, we have been hit with snow, cold and an upcoming blizzard so when my friends ask me how they can help I may point them in the direction of my snow blower!  Thank you again for the support...and happy you are all sharing your stories.  Hopefully I will be able to share my knowledge someday!

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited March 2017 #6
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    jckwilliams said:

    Thanks!

    Thanks to those who commented with all of the information!  It's so helpful...and I'm so happy people are out there listening to use "newbies" vent!  It's all still overwhelming and I'm learning a lot about my ability (and sometimes lack of ability!) to be a strong caregiver.  His stage IV was confirmed through a liver biopsy so his tumor is in his lower esophagus and stomach and has spread to his liver and lymph nodes.  My husband received his first chemo treatment yesterday.  We are fortunate to live in NY and getting our treatment through Sloan Memorial Kettering so we are in good hands.  Day one was fine...day 2 was a full day of vomiting and not eating.  We are very concerned with eating and fluids so we are looking into a feeding tube although we hope he can hold down solid food and liquid.  He's so mentally, emotionally, and spiritually ready to fight this cancer.  We just need to get him back to his physical state so he can really fight.  He came home with the chemo pump and we get disconnected tomorrow...then back again in 2 weeks.  So other than the vomiting, he is also having an extreme reaction to cold (guess that's a common side effect).  He has to wear gloves to take something out of the fridge.  Of course, being in NY, we have been hit with snow, cold and an upcoming blizzard so when my friends ask me how they can help I may point them in the direction of my snow blower!  Thank you again for the support...and happy you are all sharing your stories.  Hopefully I will be able to share my knowledge someday!

    Hello

    Hello,

    It made me feel relieved when you said you're going to MSK.  So many folks go to their local hospitals, which really isn't the way to get the best treatment and increase your chances of beating EC (unless your local hospital is a top of the line cancer center, like it is for you).  In my opinion, that is the single biggest thiing you can do to maximize your chances of survival.  

    Sounds like your husband is getting folfox as his chemo.  The pump is likely fluorouracil (5-FU), what's making him cold sensitive is likely oxaliplatin, and I'd assume he's getting leucovorin as well to make up the folfox cocktail.  I did 12 rounds of folfox when I was stage IV, which was the prescribed course.  Oxaliplatin, in particular, is a rough drug and my oncologist said most folks make it through about half of the treatments, and very few make it through the whole course (she said very few make it past 8 or 9).  I can be a bit of a maniac, and so I was determined, through hell or high water, that I was going to complete the prescribed course of treatment.  I truly believe that it was equally completing the folfox and the addition of the herceptin that allowed me to come out the other side of a death sentence in (almost) one piece.  My oncologist is world class and she did everything in her power to make sure I was strong enough to receive the next round.  She had me on three or four (Ican't remember them all) anti-nausea drugs.  She had me on treatments to bolster my blood counts so thatI would meet the requirements to receive treatment.  The folks at MSK are top notch, talk to them about ways to deal with your husband's side effects.  The side efects don't get better, they get worse with successive treatments, so start asking now, before it gets so bad he can't continue.  The cold sensitivity and neuropathy in particular get worse, or at least they did for me.

    Wishing you all the best and success,

    Ed

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #7
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    jckwilliams said:

    Thanks!

    Thanks to those who commented with all of the information!  It's so helpful...and I'm so happy people are out there listening to use "newbies" vent!  It's all still overwhelming and I'm learning a lot about my ability (and sometimes lack of ability!) to be a strong caregiver.  His stage IV was confirmed through a liver biopsy so his tumor is in his lower esophagus and stomach and has spread to his liver and lymph nodes.  My husband received his first chemo treatment yesterday.  We are fortunate to live in NY and getting our treatment through Sloan Memorial Kettering so we are in good hands.  Day one was fine...day 2 was a full day of vomiting and not eating.  We are very concerned with eating and fluids so we are looking into a feeding tube although we hope he can hold down solid food and liquid.  He's so mentally, emotionally, and spiritually ready to fight this cancer.  We just need to get him back to his physical state so he can really fight.  He came home with the chemo pump and we get disconnected tomorrow...then back again in 2 weeks.  So other than the vomiting, he is also having an extreme reaction to cold (guess that's a common side effect).  He has to wear gloves to take something out of the fridge.  Of course, being in NY, we have been hit with snow, cold and an upcoming blizzard so when my friends ask me how they can help I may point them in the direction of my snow blower!  Thank you again for the support...and happy you are all sharing your stories.  Hopefully I will be able to share my knowledge someday!

    jckwilliams~More info than U asked 4~hope it will B beneficial

    Hello again ~ It’s me again, Loretta (William’s wife)

    You’ve got a heavy load to carry—no doubt about that.  Some things you’re catching on to quickly I see.  Being the aggressive one that I am, I usually “jump in where angels fear to tread.”  So sometimes I will say things that others will be reluctant to say.  I’m an “over achiever” as opposed to one who sits down a good part of the day dreading the household chores.  It’s something I need to “work on—taking time to do “nothing.”  Let’s see now who can I blame that trait on?  Guess it would be my “mama” who always said, “Anything worth doing is worth doing well.”  So that leaves little time for just pure relaxation. Hopefully you and your husband can "take some time" to do some of those things you've always wanted to do.  I know "today's" schedule won't permit that with the present side effects, but try to find some time.  Suddenly places we wanted to go or things we wanted to do are crowded out and often replaced with going places we wish we didn't have to go to, as in tests, scans, treatments, doctor visits, etc. 

    But at this time in your life, “relaxation” is in short supply I am certain.  But “snow blowing” chores are certainly a way that your friends can help out.  I’m the kind of person that tries to figure out something I can do to help when someone is in need, and I’m in a position to help.  Up until my current diagnosis in 2012, I would often visit my friends.  I love to cook so I would usually take them something I had made, and while I was there, if I saw something that “needed doing”, I would simply say, “Can I do (and name it) for you?  It could be vacuuming, laundry or cooking.  So you’re doing the right thing.  When someone says, “How can I help?” don’t be shy—give them a list from which to choose!  Here at home, my husband helps with all the housework, and he does all the yardwork.  I still cook all the big meals.  He always makes my breakfast.  He is playing the “caregiver” role now and helping in every way.  And I know you’re doing all the things you know to do to be the “best caregiver you can be.”  And indeed, part of that is gleaning from other’s experiences and using it to your advantage whenever possible. 

    Now as to your husband’s problems with a “chill factor”, like DeathorGlory said, one of your husband’s drugs must be “Oxaliplatin” because that is one of the main complaints for those who have taken this particular drug.  This link lists several suggestions for dealing with the “cold factor.”  http://chemocare.com/chemotherapy/drug-info/Oxaliplatin.aspx

    “…The following Oxaliplatin side effects are common (occurring in greater than 30%) for patients taking Oxaliplatin:

    • Peripheral neuropathy - Numbness and tingling and cramping of the hands or feet often triggered by cold.  This symptom will generally lessen or go away between treatments, however as the number of treatments increase the numbness and tingling will take longer to lessen or go away. Your health care professional will monitor this symptom with you and adjust your dose accordingly.
    • Nausea and vomiting - Diarrhea - Mouth sores - Low blood counts - Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding. - Fatigue - Loss of appetite…”

    Among this list of probables is “mouth sores.”  This you want to avoid as much as possible because that will affect your husband’s ability to eat.  Among the “self-care tips” I see that one of them is:

    • “…To help treat/prevent mouth sores, use a soft toothbrush, and rinse three times a day with ½ to 1 teaspoon of baking soda and/or ½ to 1 teaspoon of salt mixed with 8 ounces of water…”

    For my own chemo treatments, among other things, I went to the Dollar store and bought me some “small children’s toothbrushes with a super soft bristle.”  I put a brush in each bathroom.  I also made up a solution with the soda and salt mixture.  My oncologist had told me to do this even before I read it here or knew anything about oral mouthwashes from my dentist.  I made up a lot of the mixture at one time, and then I put that in a bottle that I kept in each bathroom.  That way when I thought about it, I would brush my teeth, being careful to gently massage my gums with the brush, and then gargle with some of the mixture.  It’s best not to use any mouthwash that contains alcohol.  I’ve been through 3 different chemo treatment regimens, each one consisting of Carboplatin/Taxol infusions.  Each regimen called for IV infusion every 3 weeks for 6 treatments.  So I had plenty of opportunities to develop mouth sores. I have never had one and I do believe it is because of this routine which I was faithful to do.

    Moreover, for this last series (completed 1-19-17) I also purchased an OTC oral mouthwash called BIOTENE, and I bought the toothpaste as well.  https://www.biotene.com/dry-mouth-products/  Drugstores should have it on the shelf.  I put a bottle in each bathroom.  Directions call for rinsing every 4 hours, and I adhered to that schedule.  Also when I got up at night for any reason, I would rinse out my mouth as well.  I found the BIOTENE was more convenient, but the “home solution” was more economical.  Both work well!  Chemo can damage the gums—that in turn cause problems with one’s teeth, so keep up the mouth maintenance routine as a preventative measure.

    Now as for nausea and vomiting, during my chemo regimens, each morning upon opening my eyes, I would take my anti-nausea medicine – Granisetron (Kytril).  I would take a bottle of water and a tablet and put it on a table beside my bed.  I would take the pill the first thing—even before breakfast—and well before nausea could set in.   My medication is:  Granisetron Hydrochloride Tablets USP 1 mg.  And should I have “break-through nausea I also had a RX for Prochlorperazine 10 MG. TAB.  This was to be taken every 6 hours if needed.  Thank God I didn’t need it, but it gave me peace of mind to know that it was there in case I did need it. 

    Moreover, FYI, I have kept these articles in my files since my own anti-nausea med happened to be GRANISETRON and it has always worked so well for me.    Two separate articles tout the superiority over another often-prescribed anti-emetic ZOFRAN.

    Incidentally, anything I share with you is by way of comparison only.  I am not trying to prescribe medications that you should be taking, only sharing with you what worked for me.  It’s always the right course of action to discuss all possibilities with your medical team of course!  So just by way of disclaimer, let it be known, I have no medical training, only a practical course in real life, first as a caregiver to my husband with his Esophageal Cancer, and now as a Stage IV Peritoneal Carcinomatosis/Ovarian cancer patient myself! 

     I never experienced nausea.  I credit it to being “pro-active and not waiting for nausea to set in.” Perhaps your husband could try taking his anti-nausea med before the nausea occurs, and see if that lessens the nausea.  It’s just a suggestion that might help.  I only experienced nausea once when I had a reaction to a Neupogen injection to boost my white blood cell count.  I quickly had “extreme bone pain” and had to go to the ER for pain medication.  So from then on, I took the other drug, Neulasta, to shore up my WBC.  I never had a problem with side effects from Neulasta.  I never missed a chemo session because of a low blood count either.  I also always returned the day following each of my regular treatments and received hydration, decadron and a Neulasta injection.  Neulasta kept my white blood cell count and I never had to miss a session due to low blood count.  Hydration is a real big help because chemo “dries” out one’s body.  So if this is not part of your husband’s regimen, ask about regular appointments for hydration.  I always say, "Cancer patients shouldn't have to beg for water!"

    By the way you might want to ask "Sloan" about “radioembolization.”  It is a process whereby tiny glass radioactive beads only 1/3 the size of a hair follicle can be delivered to the Liver, and tests have shown that it has reduced the number of tumors in the Liver by 80%.  One friend whose husband had Stage IV Esophageal benefitted by this procedure.  He was treated at Moffit in Florida back in 2011.  At the time that he was approved for this procedure, his stage IV cancer was only located in his Liver, and so this was approved for him.  The liver has a right and left lobe and he was treated on one side with good success.  However, before the second session could be completed, the cancer had spread elsewhere, and so they dispensed with the treatment.  I believe that Sloan Kettering uses “radioembolization”.  Since you say it has spread to his liver, it might be something you would want to check into.  It wouldn’t hurt to ask if your husband is eligible for this treatment.  However, I’m of the opinion that the extent of metastases will determine the eligibility to receive this treatment. 

    • Here is a brief understandable explanation of radioembolization as well. 

    https://www.southnassau.org/main/y90-radioembolization-for-liver-tumors.aspx

    Now that I’ve discussed several subjects that you didn’t ask about, I suppose it’s time to close.  Below my name is more commentary on different types of feeding tubes should that become a necessity. 

    Sincere best wishes on this journey and may God give you peace of mind, emotional stability and physical energy to be all that you can be and do for your dear husband.

    Loretta

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    P.S.  This isn’t info that you need to know today, but if the weight loss becomes a big problem due to swallowing difficulties, then you will want to know more about the advantages and/or disadvantages of different types of feeding tubes.  And as for feeding tubes, I won’t go into great detail about them except to say that a “J” tube has worked best for many of the patients that have posted here through the years.  It is surgically placed in the second section of the small intestine, and from there the body dispenses it throughout as needed. There have been many “negative” and painful experiences for most of those who had a stent placed in the Esophagus to help with swallowing.  The “J” tube was by far superior relative to supplying the patient’s nutritional needs.  I’m speaking as one who has observed the stories on this site over a 15-year period.  (And overall stents were not well received here).  And like I said, this is not to be interpreted as giving medical advice.  This is just to share things that I have researched and observed from following this post closely for several years.  Glad to know that you’re at Sloan Kettering, a major medical facility. 

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    An interesting discussion here by patients who had the G-tube and the J-tube.  Daisylin (Chantal) was from Canada and all the options suggested were not always available in Canada where universal medical care is the norm.  She joined the group in 2011 and was last online in 2013.  She also wrote additional notes on her “about me” page, so when you click on her picture.  Her “about me page” will come up as well as some “blog” entries.   Her husband was a Stage IV EC patient.  You will find this interesting.

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    My husband lost very little weight during his treatments, perhaps 10# at most during the entire process.  However, when he had his Minimally Invasive Esophagectomy @ UPMC, the standard procedure is to insert a J-tube for nutritional purposes.  My husband’s first meal consisted of 2 tablespoonsful of Cream of Wheat.  That was all the new gastric tube would hold.  So you can see why one almost always loses a lot of weight after the surgery. My husband only kept his in place for 3 weeks after surgery.  Had he kept it in longer, he would not have lost so much weight so quickly.  However, he was overweight, and the loss turned out to be a plus.  He has not gained it back. 

    Dr. Luketich recommended drinking the high protein drink BOOST as well.  As for my husband’s “J”-tube—the feeding formula “Osmalite” was placed in the feeding bag which was suspended from an IV pole.  It was connected to an electronic apparatus that produced a “controlled feed”.  I would hook it up and night, and he could “eat in his sleep so to speak!”  No long tubes hung from his stomach—no pouring different foods into the tube manually.  You will note in the discussion noted above that Paul61, who is still posting here, told how well he liked his J-tube.  My husband was also given a “portable pack” that he could carry with him if he wished to travel somewhere.  However, he just preferred the “night” feeding.  When we went somewhere during the day, he just left it at home.  He was eating by mouth as well, but during the recovery period, the patient has to eat several small meals a day and try to drink liquid in between.

    Incidentally, for those that have had the benefit of an Esophagectomy, at first, it’s best not to drink liquids along with the meal, but try to drink them in between because of the small intake capacity of the new gastric tube.  It’s hard to consume all the nutrients one needs at first, hence the weight loss that most will experience.  But as for the “J” tube, it is small and unobtrusive.  When not being used, we placed a thin transparent bandage over the site to keep the connection from rubbing against his clothing and/or becoming dislodged.  We had no problems once I learned how to prevent getting a clog in that tiny connector.  Not to worry—the clog is always visible, and can always be dislodged.  It is very small tubing that requires a continuous flow.  A “novice nurse” like I soon learned the tricks of the trade. 

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      1. https://www.youtube.com/watch?v=808ZqK65b5w&feature=relmfu

      This is a Stage IV EC patient named “Ken” who posted many videos back in a period from 2007 to 2010. He promised a video on how he used his G-tube.  You can see that here.  --   “Uploaded on Sep 7, 2007

      The restricted esophagus I mentioned in this video will be corrected during my next endoscopy. The medication that got my stomach to begin digesting again is Metoclopram, (generic for Reglan).”

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      2.   https://www.youtube.com/watch?v=J66zizn8Pf0

      How do feeding tubes work?

      Published on Mar 26, 2013

      http://sunnybrook.ca // Sunnybrook registered dietitian Katelynn Maniatis explains feeding tubes, including methods of insertion, benefits, care and how they work.

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      3.  https://www.youtube.com/watch?v=3jb5wdxSqOg

      Here is a “professional” video of how a “G” tube is placed into the stomach.

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      4.  http://oley.org/?page=ChoosingTheRightTube

      This is info about the different types of tubes.

      _______________End of references re feeding tubes______________

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