Colleeni2~Have chosen to answer you on a separate topic re husband's EC diagnosis & treatment

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LorettaMarshall
LorettaMarshall Member Posts: 662 Member
edited April 2017 in Esophageal Cancer #1

Dear Colleeni ~

Since you may not hear from LoveLife1 any time soon, I've decided to answer you on a separate topic line here.  In the future we will be able to "find you" more easily with a topic all your own.  Sometimes several people write on the same topic line, and it's hard to decide who is talking to whom.  So this is my reply to your two entries you have made this date - April 22, 2017 relative to your husband having been diagnosed with Esophageal Cancer.  You don't seem to be certain of his diagnosis, so we hope that will be determined quickly.  It will determine the type of treatment is prescribed. 

Not sure how much research you are doing,  or have done already, on Esophageal Cancer, but I can sense your worry.  I see that I completely missed “LoveLife’s” entry of hope and perseverance dated February 11, 2017.  Nevertheless, we all “have a life” and can’t always be online to read every entry.  So since reading that particular letter just now, my personal opinion is that it’s okay if one wants to try some extra things in the way of diet, but there is no diet that will cure cancer.  Some people swear by holistic methods but I’ve yet to find one that wrote here and said that they did “this or that” and went “here or there out of the country” and were cured.  So please, even though I detect some fear in your letter, it is understandable, but please be certain that you and your husband include the standard protocol for the treatment of Esophageal Cancer.

As I’ve often stated before, one should always seek a second opinion at a major hospital who performs the latest laparoscopic procedures for Esophageal Cancer.  High volume hospitals often deal with the sickest of patients and have the most experience with difficulties should they arise.  So since you haven’t given any of us any information to consider, I trust that you have already done this. 

Furthermore, age 75 should not be a reason to fear having an Esophagectomy.  We know people older than 75 who have had an Esophagectomy.  But the very latest and least invasive surgery is the one that will afford your husband the quickest recuperation.  And sure, many have the surgery, and have a recurrence.  I see that “LoveLife1’s” father now has Stage IV Esophageal Cancer with metastasis to the lungs and the brain.  That is certainly sad to know.  But that may not ever happen to your husband, so you have to carry on with what you’re dealing with.   

As a matter of fact, recurrence is an ever-present culprit that comes along with most cancer diagnoses.  But even though the stats are not great, no one should “give up before they begin!”  I will tell you that this cancer will strike fear into any heart, but we have to “deal with it head on.” 

Now Colleni, I note that in your remarks to “LoveLife1” that you say that your husband has Stage III or IV, and that he is beginning chemo and radiation next week.  Which is it?  It isn’t both!  It makes a world of difference as to how the cancer will be treated.  Stage IV Esophageal Cancer patients have more than one organ affected.  Just exactly what is written on your husband’s records?  Would you mind sharing with us more of your story?

  • Who are the doctors?
  • Where has your husband been seen?
  • What is the chemo/radiation schedule, and what are the drugs mentioned?
  • Has he had a medi-port implanted?  This is preferable. 
  • Has he had a 2nd opinion?
  • Does he have other medical problems?
  • Has he been tested to see if he is HER2 positive?  If he has the test and it proves to be positive, then that means he has a cancer gene that will “over-express” itself, and cause the cancer to multiply more rapidly.  A drug, (not a chemo agent) called HERCEPTIN should also be included in his treatment regimen if this is the case.  If the doctors have not tested him for this possibility, then you should request that it be done.  This drug can “tamp down” the rapid reproduction of cancer cells.   

We who monitor this site want to be of help when we can, and so if you have questions, please let us know.  Those who respond here have been “around the block” and are still here.  We write from different perspectives—different EC diagnoses—different surgeries—but with valuable insight into this cancer.  So since we’re sorta’ “operating in the dark” with you, if you want to share more, we’re here.  And yes, I know that we pray for all those who write here.  Even though God may not answer all our prayers in the way we would “wish”, He can give us the calm to deal with the problems on a daily basis.  And He has certainly given my husband a miraculous recovery.

So since I don’t know where to begin, I will give you a link to some of the other responses, I have written here.  They “cover the waterfront” and will be helpful. 

EC’s regimen isn’t easy, but it’s “doable” and can have great rewards when successful.  Chemo and radiation can be very “tiring”.  I know that from my experience as a Stage IV Ovarian Cancer patient myself!  Frown My husband, William, was diagnosed at age 65 with Adenocarcinoma at the Gastroesophageal junction—T3N1M0.  He had a Minimally Invasive Esophagectomy @ University of Pittsburgh Medical Center on May 17, 2003 and is now into his 14th year of survival with a clean bill of health.  Dr. James D. Luketich was his Thoracic Surgeon.  William's latest PET scan was just done in March 2017 and shows “no evidence of disease!”  That can be the same for your husband too!

Wishing you and your husband every success.

Loretta

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1.  https://csn.cancer.org/node/302187

References re EC

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2.  http://csn.cancer.org/node/301646

A letter I wrote relative to things that have helped me during my 3 different Chemo treatment series, thus far.

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3.  http://chemocare.com/

You can find the chemo your husband will be having.  Explicit info is here that will be very helpful.

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

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

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6.  https://www.cancer.org/cancer/esophagus-cancer.html

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

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

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Comments

  • colleeni2
    colleeni2 Member Posts: 4
    edited July 2017 #2
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    Her +

    Thank you so much. I wish I read this earlier. My spouse had a tiny dot on his lung that was too small to biopsy. They told us if it responded to chemo then it was probably cancer. The scan after the chemo showed that the spot shrank...so that made him stage 4 cancer. He was tested for HER and was positive, but the cancer center didn't see the results so Herceptin was not added to his meds. When I asked them about it, they were unaware of the results.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #3
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    Colleeni~Now that they KNOW~HERCEPTIN SHOULD BE PRESCRIBED!

    Hi there ~ My question, Now that doctors know that he is positive for the over-expressive gene, I sure hope they have added it.  iT'S NOT TOO LATE!  Herceptin is not a chemo, it is a separate treatment.  Some have stayed on it as a maintenance drug, even after they've completed chemo.  Ed, who writes as "DeathorGlory" can certainly testify to the fact that it has kept him living longer.  Any EC patient that tests positive should be having it.  It has been proven to be effective and approved for EC patients by the FDA.  If I were you, I would be adamant that your husband have HERCEPTIN added to his schedule, STARTING NOW!

    Love Loretta

  • colleeni2
    colleeni2 Member Posts: 4
    edited July 2017 #4
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    Thank you!!!!!

    Thank you so much! Because his tumor has not shunk as much as they like it to. He will be getting more treatment in August after he has a another endoscopy and biopsy.  Should I push for earlier treatment?

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #5
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    colleeni2 said:

    Her +

    Thank you so much. I wish I read this earlier. My spouse had a tiny dot on his lung that was too small to biopsy. They told us if it responded to chemo then it was probably cancer. The scan after the chemo showed that the spot shrank...so that made him stage 4 cancer. He was tested for HER and was positive, but the cancer center didn't see the results so Herceptin was not added to his meds. When I asked them about it, they were unaware of the results.

    Hello Colleen

    Hello Colleen,

    Just want to echo Lorrett's thought about HER2+ status.  Please insist that he be given herceptin with his new chemo regimen.  HER2+ status means that your husband has a particularly aggressive form of EC.  Herceptin can work with chemo to kill cancer.  I've been getting it weekly for coming in on 6 years now.  I started getting it alongside my regular chemo (folfox) and have been getting it alone for over 5 years.  Along with the folfox, it killed my stage IV (lung) EC and I've been in remission for over 5 years.

    Wishing you guys the best,

    Ed

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #6
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    colleeni2 said:

    Thank you!!!!!

    Thank you so much! Because his tumor has not shunk as much as they like it to. He will be getting more treatment in August after he has a another endoscopy and biopsy.  Should I push for earlier treatment?

     

    Colleeni-Age 75 is not 2 old 4 EC surgery/why delay Herceptin?

    Hello again Colleeni –

    You still didn’t answer many of my questions so I will still go from here, and what you stated in your response to LoveLife. 

    Previously you said on April 22, 2017 that your husband was 75 and has Stage 3—maybe 4.  You said he was starting simultaneous chemo and radiation next week.  May I ask again, what doctors have recommended “What” and “When?” As of this writing, that means that at least 2 months and 10 days have passed.  What regimen was prescribed for your husband, and what is now the “DEFINITIVE” stage. 

    What did his treatment regimen consist of as far as chemotherapy and radiation?  Now you say there is a spot on the lung that has responded to radiation, so now it is Stage IV!

    Was the spot been confirmed as cancer by a PET scan?  Or could it be something else?  I’m still uncertain as to what you are dealing with.

    I know that we were talking often with a fella named “Randy”, age 78, who posted here as “Ham6789”.  Many of our letters were in the private e-mail and by phone.  Originally, he wrote to ask if he were too old.  So I thought I would bring that link back up and make some up-to-date comment just in case others felt they might be too old to have an Esophagectomy.  If a person is staged with Esophageal Cancer and otherwise in good health, then there’s hope for them as well, even though we know that when the cancer has already spread to another organ, it is classified as Stage IV.  But even in that instance palliative measures are usually taken that do include chemotherapy and radiation.

    Now you tell us that your husband has the over-expressive gene that causes the cancer to multiply more rapidly.  Seems there was some breakdown in communication that hasn’t bode well for your husband!  One thing for sure—all doctors should have been on the same “wave length.”  Your husband should have been started on the HERCEPTIN regimen, concurrent with the chemo and radiation regimen.  It is given at intervals just like the chemo/radiation regimen.  And as Ed says, he has been on it for years now and it has served him well.  Now to be honest, Stage IV EC patients do not all fare as well as Ed, but he is an example of what can be. 

    So in short, even though I’m not a doctor, seems to me there is no reason to “wait any longer” to begin the HERCEPTIN regimen.  As I understand it, Herceptin can be given concurrently with a chemo regimen, or it can be given as a “maintenance” treatment.  Either way,  seems to me there would be no good answer for “delaying” beneficial treatments that could be curtailing further spread even now.  If this were the case with my husband, I would be asking the doctors to start NOW.

    Hope this answers your question.  Often you have to be your own advocate and let the doctors know you know a thing or two!  They have many patients, but you only have one husband!

    Loretta

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    1.  https://www.bing.com/videos/search?q=video+herceptin+treatment&view=detail&mid=E4AEF1EEDC8B44D09315E4AEF1EEDC8B44D09315&FORM=VIRE

    Video explaining Herceptin and why and how it is used.

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    2.  https://www.cancer.gov/about-cancer/treatment/drugs/fda-trastuzumab

    “Adding Targeted Therapy to Treatment for Esophageal Cancer

    Name of the Trial

    Phase III Randomized Study of Radiotherapy, Paclitaxel, and Carboplatin with versus without Trastuzumab in Patients with HER2-Overexpressing Esophageal Adenocarcinoma (RTOG-1010). See the protocol summary.

    Why This Trial Is Important

    Esophageal cancer that is confined to the esophagus and nearby lymph nodes (locally advanced disease) is often treated with a combination of chemotherapy, radiation therapy, and surgery (called trimodality therapy). Although trimodality therapy sometimes cures the disease, relapses are common, and many patients ultimately die from their disease. New strategies are needed to help prevent recurrences in patients with locally advanced esophageal cancer.

    Samples of tumor tissue removed during biopsy or surgery indicate that about 20 percent to 30 percent of esophageal cancers express a growth factor receptor protein called HER2 (that is, the tumors are HER2 positive). Treatment with trastuzumab (Herceptin), a drug that targets HER2, improves the survival of women with HER2-positive metastatic breast cancer, and the drug markedly decreases cancer recurrence and improves the survival of women with earlier-stage HER2-expressing breast tumors. Doctors hope that trastuzumab may likewise reduce disease recurrence and improve the survival of people with HER2-positive esophageal cancer…

    In this phase III clinical trial, people with confirmed HER2-positive locally advanced adenocarcinoma of the esophagus will be randomly assigned to receive preoperative radiation therapy and chemotherapy, with or without trastuzumab. Following surgery, patients assigned to the trastuzumab arm of the study will receive maintenance therapy with trastuzumab for 1 year. The study is designed to determine whether the addition of trastuzumab improves disease-free survival and overall survival…”

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    3.  http://www.macmillan.org.uk/cancerinformation/cancertypes/breast/aboutbreastcancer/typesandrelatedconditions/her2 positive.aspx

    [My note:  Although this was written with Breast Cancer patients in mind, who also test positive in many cases, the method of testing is interesting.  We know now that the FDA has approved HERCEPTIN for both BC and EC patients.  So I am listing this link mainly for the method of performing a test for the Human epidermal growth receptor2 protein factor.]

    “…HER2 (human epidermal growth factor) is a protein that can affect the growth of some cancer cells. It is found on the surface of normal breast cells. Some breast cancer cells have a very high number of HER2 receptors. The extra HER2 receptors stimulate the cancer cells to divide and grow. When there are higher levels of the HER2 protein in a breast cancer, it is called HER2 positive breast cancer.

    The higher the level of HER2, the more likely the cell is to grow and divide. Between 15 and 25 out of every 100 women with breast cancer (15–25%) have HER2 positive cancers. Fewer men with breast cancer are thought to have HER2 positive cancers.

    HER2 positive breast cancers tend to grow more quickly than HER2 negative breast cancers. However, effective treatments called targeted (biological) therapies have been developed to treat HER2 positive breast cancer. The drug most commonly used is trastuzumab (Herceptin ®)…

    Testing for HER2

    Everyone diagnosed with breast cancer will have a test to check the HER2 level of the breast cancer cells.

    Testing is usually done after you have had a sample of breast tissue removed (a biopsy) when you are first diagnosed. But it may also be done after you’ve had surgery to remove the cancer. Knowing if the cancer is HER2 positive or negative helps your doctors decide which treatments will be best for you.

    If you have a breast cancer that comes back after initial treatment, you may have the HER2 levels checked again. This can be checked by taking another biopsy. In a small number of cases (1 in 5 or fewer), the HER2 level may have changed. Your specialist will advise you whether this is appropriate in your situation.

    There are two main ways of testing for HER2. These are immunohistochemistry (IHC) and fluorescence in-situ hybridisation (FISH).

    Immunohistochemistry (IHC)

    IHC measures the level of the HER2 protein in the sample of tissue taken from the cancer. The HER2 level is graded from 0 to 3+.

    0–1+ means there is a normal amount of HER2, and the cancer is HER2 negative.

    3+ means there is a higher than normal level of HER2, and the cancer is HER2 positive.

    If the result is 2+, guidelines recommend you have a FISH test (see below). The results of this test will help identify the people with a level of 2+ who will benefit from treatment with trastuzumab.

    FISH (fluorescence in-situ hybridisation)

    FISH measures the amount of a gene called the HER2/neu gene. This gene is responsible for the overproduction of HER2 protein in each cell. About 1 in 4 people (25%) with a 2+ result will have a positive FISH result.

    The result will be either:

    • FISH negative – there is a normal level of the gene and the cancer is HER2 negative.
    • FISH positive – there is a higher level of the gene and the cancer is HER2 positive…

    You may also have other treatments to reduce the risk of the cancer coming back. These include chemotherapy, radiotherapy and hormonal therapy.

    Drug treatments called targeted therapies have been developed specifically to treat HER2 positive breast cancer. These include a drug called trastuzumab (Herceptin®). If you have a HER2 positive breast cancer, you will be given trastuzumab as well as other treatments to help reduce the risk of the cancer coming back.  

    Your specialist looks at the following things to decide which treatments are best for you:

    • the stage of the cancer (its size and whether it has spread outside the breast)
    • the grade of the cancer (how fast growing the cells are)
    • whether the cancer cells are HER2 positive
    • whether the cancer cells have receptors for the hormone oestrogen (which means they will respond to hormonal therapy).

    If you have HER2 positive breast cancer that has spread to other parts of the body (secondary breast cancer), your treatment will depend on what treatment you have had before and how long ago this was.

    Surgery - If you have surgery, the type of surgery you have will depend on the size and position of the cancer. You and your doctor will decide which operation is best for your individual situation. Some people have chemotherapy and trastuzumab before surgery (called neo-adjuvant treatment). This may shrink the size of a large tumour so that when you have your operation, you may only need part of the breast removed instead of all of it…”

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    4.  https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm525780.htm

    [My note:  I met a lady in our oncology lab who has just completed a clinical trial for this drug, and it eradicated her tumor on her lung.  She first had breast cancer 9 years ago, and recently it had metastasized to the lung.] 

    “Atezolizumab (TECENTRIQ)

    On October 18, 2016, FDA approved atezolizumab (TECENTRIQ, Genentech Oncology) for the treatment of patients with metastatic non-small cell lung cancer (NSCLC) whose disease progressed during or following platinum-containing chemotherapy. Patients with EGFR or ALK genomic tumor aberrations should have disease progression on FDA-approved therapy for these aberrations prior to receiving atezolizumab.

     Atezolizumab is a programmed death-ligand 1 (PD-L1) blocking antibody that previously received FDA accelerated approval for the treatment of locally advanced or metastatic urothelial carcinoma that has progressed after platinum-containing chemotherapy…”

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