Starting new treatment..Cyramza and Taxol

ebott614
ebott614 Member Posts: 2
Hi, My husband was diagnosed with esophageal adenocarcinoma in June of 2014.
He has gone through all the regular treatments: Chemo, Radiation and surgery to remove 2/3 rds of the esophagus and 1/3 rd of stomach and at that time was stage 3 with a couple of suspicious lymph nodes removed. 
His first scan after this treatment showed a node spread to neck area.
He was treated with radiation to target that one node.
and next scan showed more spread of lymph nodes to a wider area in chest ...he was treated with Cisplatin and something else...the following scan showed more spread to other lymph nodes...he was treated with oxilaplatin and Erubicin (Sp?)and also Xeloda.
He was recently scanned and the treatments have not worked.
Because he had 3 rounds of the platins he will begin an IV treatment of Cyramza, and paclitaxel, ....also (decadrone.. the night before and morning of IV.)
Bottom line is.. have others any experience with this new treatment...I understand that Cyramza is a biologic and not chemo. Is there any hope that this will work this time??
We're beginning to think this is the beginning of the end...and are very much on edge.
Thank you so much for any info you can give us.
This is my first post on any discussion board so forgive me if I make no sense.  
Liz



Read more: http://www.healthboards.com/boards/cancer-throat/1020805-cyramza-taxol-treatments.html#ixzz4A9JLnZNL

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited May 2016 #2
    LIZ~U made perfect sense~many of us R living "on the edge" too!

    Hello Liz:

    I started to say “Good morning” but even now it is evening.  This letter is extremely lengthy, and I suggest you might pick a time when you have “extra” time to concentrate on the articles referenced below my name.   Liz, this letter was not easy to write, but I’ve attempted to share thoughts with you as from one caregiver to another caregiver in reference to our husbands.  I’ve taken the liberty of using my own experience as a Stage IV Ovarian Cancer patient in this letter, although I talk more about my own cancer on two other sites, Ovarian and Peritoneal Carcinomatosis.  But for the purpose of this letter, I mainly want to concentrate on what your husband has experienced so far and provide you with articles that will help you to determine what, if any new drug, will “work.”   

    We know the turmoil and anxiety that accompanies you and your husband on this long journey.  When my husband was diagnosed with Esophageal Cancer, Stage III, we were both clueless as to what it would involve.  The scary word was CANCER!  And I always said, “When my husband has cancer, I have cancer.” By the way, since your husband’s cancer has now metastasized, what is the “official diagnosis?”   If the primary cancer was Esophageal, it will still remain “Esophageal cancer with metastasis to another organ.  It will not change to “Throat Cancer.”  It would appear that your husband has tried most of the drugs listed that would provide help for him. 

     Only a couple of days ago, we were sharing our “cancer experiences” with a cashier.  We were talking about cancer.  She asked, “How long have ya’ll been married?”  When telling her we had been married for 54 years, she said “What’s your secret?”  In truth, we share everything and have NO secrets.  Although we are total opposites in some ways, we are “one” in the things that matter most.  (So I hope this is the same kind of relationship that you have with your husband.  It’s best when both husband and wife can share their deepest concerns.  It’s therapeutic in my estimation.  First for us, is our total reliance and mutual faith in divine providence.  We’ve placed our lives in the hands of God, and trust HIM to give us the strength to carry on.

     That is what I stress when someone asks me how I can be so “positive” with Stage IV Ovarian Cancer.  While I know that God has a history of performing miracles, and is the greatest of all “Physicians”, He doesn’t promise me an automatic miracle simply for the asking.  But He does promise me He will be with me always.  Actually the real miracle is that He loves all of us “warts and all” and cares about every aspect of our lives.  Now I hope that we’re not so politically correct on this board that one cannot mention the name of God without being thrown off the site.  But our personal “secret” is dependence and guidance on Him for our survival.  And while my husband was diagnosed in 2002, and had pre-op chemo/radiation and then MIE surgery in 2003, which has resulted in 14 years of survival without a recurrence, my intro into Ovarian cancer came in 2012.

     Actually my first CT Scan revealed a Stage IV diagnosis of Peritoneal Carcinomatosis which is terminal.  That said, I just want you to know that I know the suspense that comes along with taking chemo treatments, and wondering if they are going to work.  And actually, with Stage IV, personally, I’m not expecting any cure.  The best I hope for are long periods of “intermission” without the need for another “attempt” at staving off the “wild ride” that cancer likes to take us on.

     Most people have never heard of Esophageal Cancer.  And those of us who have had that diagnosis empathize with you immediately.  That’s why when I read your letter this morning, my heart dropped because I identify with the ordeal you are still struggling with.

    As for my husband’s post-op experience, of the 22 or 23 lymph nodes removed for biopsy, none proved to be cancerous, so no post-op treatment was prescribed.  Had there been even one lymph node shown to have cancer, we were already informed that post-op chemo would have been ordered.  Am I correct in reading that your husband’s post-op treatment consisted of only targeted radiation to the neck.  While radiation “targets” a specific area designed to shrink the tumor, chemotherapy circulates throughout the body cavity as you already well know.  That process is explained as to how “Taxol” works in one of my references below.

     In reading your letter, it was a bit unclear as to when the “first” scan was conducted.  Was it before he was discharged from the hospital, or months afterwards?  Did all his lymph nodes tested by the pathologist during the surgery test negative?  Or did one node test positive directly after surgery, and then only radiation was ordered?  But at this point, it isn’t relevant to what you’re asking about today.  When a cancer has spread from one major organ to another, it becomes Stage IV.  At that point, palliative measures are taken to try to stop further spread.  And from what you say, the cancer has continued to spread further into the chest area, and that no “platins” have proved to be effective. 

     While my husband had pre-op chemo treatments of Carboplatin and 5-FU, my treatments were Carboplatin & Paclitaxel.  So I put the “ChemoCare” web links below my name for you to research the uses for each of the drugs, Cyramza, Paclitaxel (Taxol) Decadron and HERCEPTIN. No need for me to tell you the side effects of any of these drugs, because they affect all of us differently, but few of us “sail through” with no side effects.  So yes, I have had TAXOL.  It has proven to reduce the “size” of my tumors but has not totally eliminated them.  Personally, at some point I will have to decide, “When enough is enough!”  That’s a question that all Stage IVs will have to answer individually.  For me, when chemo is doing more harm than good, that will be “enough”.  Long ago Mayo Clinic posted a long piece on their website about when to stop chemo treatments.  I posted it a long time ago, and so I will post it again on a separate topic forum.  Some on this board have Stage IV and have lived a long time with that diagnosis.  But far be it from me to speak for anyone else. 

     Believe me, all of us on this site know what it’s like to be diagnosed with Esophageal Cancer.  It’s seemingly a “walk in the dark” and only in “hindsight” can we see where we’ve been.  And even at this point in your journey, you’re still uncertain as to whether any drug will be able to slow down the rate of growth of this cancer.  It is true that chemotherapy is not a cure-all, but so far that seems to be the most effective thing being done.  Is there any possibility that there are any clinical trials that your husband could enter that has one of the Immunotherapy drugs being tested today?  Of course, I would want to be certain that it would be the “real thing” that I was receiving and not a placebo.  I know that each trial has certain pre-requisites as to who will be considered, but I know they receive close consistent monitoring as to the progress thereof. 

     Oh that there could be found a real cure for Esophageal cancer!  Since most EC cancers and Ovarian cancers are not found in the early stages, the cancer has already begun doing its dastardly deeds long before we realize it is actually invading our bodies.  So, Liz, actually this is just a get-acquainted letter, but not one with any magic answers.  You ask, “Is there any hope that this will work this time??”  Would that I were able to give you a positive reply, but the answer is—only God knows.  That’s why we keep trying, hoping that although the last one didn’t work well, perhaps the next one will be more effective in slowing the spread.  But as for me, there will be a time when God gives me the guidance to say, “Enough is enough.”  My prayers go with you as you travel this lonesome, troublesome and wearisome road.

     Lastly Liz, you made “perfect sense” to me.  Write anytime, we’re all listeners here, even if we can’t answer all your questions. 

    Loretta, a Stage IV cancer patient who understands what it’s like to “live on the edge

    ______________________________________________________________________________

    P.S.  Below are references for the drugs you mention.  Any and all should be discussed you’re your husband’s doctor.  We’re only able to tell our own personal stories, but I, for one, have no medical degree.  I’ve taken the liberty of underlining some statements or putting them in “bold” letters.  You might be interested in checking out this site by NIH.  It references the use of “Herceptin” for cancer patients that test positive for a certain type of cell that rapidly divides and accelerates the growth of tumors.  It is a drug that is given in conjunction with chemotherapy, and is supposed to curtail the rapid spread of cancer cells.  Early on it was believed that this cell proliferation was only evident in Breast Cancer patients, but later it was found that Esophageal cancer patients were also affected.  It has been approved for use Esophageal Cancer patients.  You did not mention it, so you might want to check that out.   Not all Esophageal Cancer patients will test positive.   

    1. http://www.cancer.gov/about-cancer/treatment/drugs/trastuzumab

     “…Trastuzumab is approved to be used alone or with other drugs to treat:

     Adenocarcinoma of the stomach or gastroesophageal junction. It is used for HER2 positive (HER2+) disease that has metastasized (spread to other parts of the body) in patients who have not already been treated for metastatic cancer…”

    2.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-new-research

     “…Targeted drugs--Targeted drugs, which attack certain substances in cancer cells, are useful in some other cancers and are now being tested in esophageal cancer. For example, the drug trastuzumab (Herceptin) interferes with a protein on esophageal cancer cells called HER2, which helps them grow and spread. Only a small portion of esophagus cancers (mostly adenocarcinomas) have too much of this protein, but this drug may help treat these cancers.

     Many other targeted drugs are now being studied for use against esophagus cancer as well…”

    3.  https://www.nlm.nih.gov/medlineplus/druginfo/meds/a699019.html

     “…Why is this medication prescribed?  ...n...Trastuzumab is also used with other medications to treat certain types of stomach cancer that have spread to other parts of the body. Trastuzumab is in a class of medications called monoclonal antibodies. It works by stopping the growth of cancer cells…”

    4.  http://www.chemocare.com/chemotherapy/drug-info/taxol.aspx

     “Taxol - Generic Name: Paclitaxel - Other Trade Name: Onxal TM

     Drug Type:

     What is Taxol? Taxol is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Taxol is classified as a "plant alkaloid," a "taxane" and an "antimicrotubule agent."  (For more detail, see "How Taxol Works" section below).

     What Taxol Is Used For:

     Taxol is used for the treatment of breast, ovarian, lung, bladder, prostate, melanoma, esophageal, as well as other types of solid tumor cancers. It has also been used in Kaposi's sarcoma…

     How Taxol Works:

     Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue.   "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition.  Cancerous cells lose this ability.  Cancer cells no longer have the normal checks and balances in place that control and limit cell division.  The process of cell division, whether normal or cancerous cells, is through the cell cycle.  The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).

     The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division.  Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division.  If the cells are unable to divide, they die.  The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink.  They also induce cell suicide (self-death or apoptosis).

     Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific.  Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific.  The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective.  This is why chemotherapy is typically given in cycles.

     Chemotherapy is most effective at killing cells that are rapidly dividing.  Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur.  The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss.  Different drugs may affect different parts of the body…”

    5.  http://chemocare.com/chemotherapy/drug-info/decadron.aspx

     “Decadron - Generic Name: Dexamethasone
    Other Brand Names: DexasoneDiodexHexadrolMaxidex
    Other Names: Dexamethasone Sodium PhosphateDexamethasone Acetate

     Drug Type:   

    Decadron has many uses in the treatment of cancer.  It is classified as a glucocorticosteroid.  (For more detail, see "How Decadron Works" section below).

     What Decadron Is Used For:

     As an anti-inflammatory medication.  Decadron relieves inflammation in various parts of the body.  It is used specifically to decrease swelling (edema), associated with tumors of the spine and brain, and to treat eye inflammation.

    • To treat or prevent allergic reactions.
    • As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.
    • As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.  
    • To treat nausea and vomiting associated with some chemotherapy drugs.
    • Used to stimulate appetite in cancer patients with severe appetite problems
    • Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands)…

     The amount of Decadron you will receive depends on many factors, including your general health or other health problems, and the reason you are receiving Decadron.  Your doctor will determine your dosage and schedule…”

    6.  http://www.drugs.com/sfx/cyramza-side-effects.html

     This site lists “detailed” side effects of Cyramza

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

     CYRAMZA - “Generic name: Ramucirumab

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

     Drug type: CYRAMZA™ is a monoclonal antibody, Vascular Endothelial Growth Factor Receptor 2 (VEGFR2) Inhibitor. (For more detail, see "How this drug works" section below).

     What this drug is used for:

     Treatment of advanced gastric cancer or gastro-esophageal junction adenocarcinoma.

    • Non-small cell Lung cancer
    • Metastatic Colorectal cancer…

     Monitoring and testing: 

    You will be checked regularly by your health care provider while you are taking CYRAMZA™, to monitor side effects and check your response to therapy. Your blood pressure will be monitored routinely as high blood pressure may be a side effect of CYRAMZA™.

     How this drug works: 

    CYRAMZA™ is classified as a monoclonal antibody. Monoclonal antibodies are a relatively new type of "targeted" cancer therapy.

     Antibodies are an integral part of the body's immune system. Normally, the body creates antibodies in response to an antigen (such as a protein in a germ) that has entered the body. The antibodies attach to the antigen in order to mark it for destruction by the immune system.

     To make anti-cancer monoclonal antibodies in the laboratory, scientists analyze specific antigens on the surface of cancer cells (the targets). Then, using animal and human proteins, they create a specific antibody that will attach to the target antigen on the cancer cells. When given to the patient, these monoclonal antibodies will attach to matching antigens like a key fits a lock.

     Since monoclonal antibodies target only specific cells, they may cause less toxicity to healthy cells. Monoclonal antibody therapy is usually given only for cancers in which antigens (and the respective antibodies) have been identified already.

     CYRAMZA™ is a monoclonal antibody that works by targeting and binding with the vascular endothelial growth factor receptor-2 (VEGFR-2) and blocks the activation of VEGF.

     When VEGF is overexpressed, it can contribute to disease. Solid cancers cannot grow beyond a limited size without an adequate blood supply; cancers that can express VEGF are able to grow and metastasize. Drugs such as CYRAMZA™ can inhibit VEGF and control or slow down tumor growth by decreasing the blood supply to the tumor.

     Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.”

    8.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-general-info

     An excellent reference for understanding esophageal cancer

    9.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-by-stage

     This tells about how each stage of Esophageal Cancer is treated.

     “…Stage IV

     Stage IV esophageal cancer has spread to distant lymph nodes or to other distant organs.

     In general, these cancers are very hard to get rid of completely, so surgery to try to cure the cancer is usually not a good option. Treatment is used mainly to help keep the cancer under control for as long as possible and to relieve any symptoms it is causing.

     Chemo may be given (possibly along with the targeted drug trastuzumab if the cancer is HER2 positive) to try to help patients feel better and live longer, but the benefit of giving chemo is not clear. Radiation therapy or other treatments may be used to help with pain or trouble swallowing.

     For cancers that started at the gastroesophageal (GE) junction, treatment with the targeted drug ramucirumab (Cyramza) may be an option at some point. It can be given by itself or combined with chemo.

     Some people prefer not to have treatments that have serious side effects and choose to receive only treatments that will help keep them comfortable and add to their quality of life. For more information on treatments that may be helpful, see “Palliative therapy for cancer of the esophagus…”

    10.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-after-no-longer-working

     “…If treatment for cancer of the esophagus stops working

     If cancer keeps growing or comes back after one kind of treatment, it’s possible that another treatment plan that might still cure the cancer, or at least keep it under control enough to help you live longer and feel better. Clinical trials also might offer chances to try newer treatments that could be helpful. But when a person has tried many different treatments and the cancer has not gotten any better, even newer treatments might no longer be helpful. If this happens, it’s important to weigh the possible limited benefits of trying a new treatment against the possible downsides, including treatment side effects. Everyone has their own way of looking at this.

      This is likely to be the hardest part of your battle with cancer – when you have been through many treatments and nothing’s working anymore. Your doctor might offer you new options, but at some point you may need to consider that treatment is not likely to improve your health or change your outcome or survival.

     If you want to continue to get treatment for as long as you can, you need to think about the odds of treatment having any benefit and how this compares to the possible risks and side effects. Your doctor can estimate how likely it is the cancer will respond to treatment you’re considering. For instance, the doctor may say that more treatment might have about a 1 in 100 chance of working. Some people are still tempted to try this. But it’s important to have realistic expectations if you do choose this plan…”

    ____________________End of references_______________________

      

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited June 2016 #3
    Liz~U & your husband start anew again 2day~wishing 4 success!

    Dear Liz:

      Today you and your husband are starting down that road once more to see if there’s something that will curtail the spread of this Esophageal Cancer.  Your husband has been treated by one of the best at UPMC, Dr. Levy.  So a choice of surgeons surely isn’t the problem.

     Esophageal cancer is a vicious villain.  My husband, William and I, can only hope for something to break in your favor.  We’re so sorry that you’ve been traveling this road for 2 years now.  We always hope that the journey will end with “no residual cancer and a good quality of life.”  We had your name and June 10th, written on our calendar, and only wanted you to know that we’ve remembered you. 

    May God give you comfort as only He can, in these trying times, and once again, the old “Kenny Rogers” song is so appropriate. 

    I had a consult with my oncologist yesterday.  There are some new developments that we’ve elected to “watch” instead of jumping into another round of some kind of treatment.  So right now, I'm in a "holding" pattern.  There are not a lot of options for Ovarian Cancer, Stage IV, either. 

    We’ve learned long ago that “chasing rabbits” can lead one down the wrong hole.  So I’m praying also to know “when to hold ‘em and when to fold ‘em and when to walk away and when to run. 

    It’s hard for your husband to keep on checking in at “Heartbreak Hotel”, so we just hope that these two drugs, Cyramza and Paclitaxel (Taxol) will be a good combination.   You have certainly tried all the other popular drugs that have in many instances been able to curtail and kill the tumors. 

    Thinking of you & hoping that something good will come from this series of treatments.

     

    Loretta (& William) 

     

  • Dale1972
    Dale1972 Member Posts: 3
    edited June 2016 #4
    ...

    That was a very long but also very informative post above basically the short answer is Pactitaxol coats the cromasomes so in the cells 3rd phase of life mitosis with cell decision it binds them and dose not allow them to split stopping replication since cancer cells divide rapidly it effects them more than normal cells throughout the body And it also triggers cell suicide Apoptosis ....rapidly deciding cells are also effected like in the gastrointestinal tract which may cause bleeding watch for black or tarry stools and the blood cells produced in the bone marrow in larger bones causing the drop in red and white blood cells and platelets used in clotting wear a mask and stay away from crowds and inform family and friends if they even think they might be getting sick to stay away... also hair most likely will become brittle and fall out and the cells  in your mouth also watch for mouth sores and ulcers I purchased my wife several different wigs and styles when she was diagnosed before she started treatment so she already had options and made it a little easier on her......also it has a short half life of 5.6 hours  and is usually infused I. A couple hrs so no going home on a pump and avoid coffee this has shown to block its affectiveness it's is metabolized in the liver so watch the whites in his eyes and skin color avoid the sun wear minimum SPF 15 and never go outside without a hat and sun glasses his nail bed most likely will change color and darkening of tha skin anywhere he has received radiation in the past 

    the Cyramza http://chemocare.com/chemotherapy/drug-info/ramucirumab.aspx this is a very new targeted medicaction that works on angiogenesis basically if the cancer rumors canot get a blood supply they could not get any larger than a tumor ball that would fit on the tip of a sewing needle so this medication targets the blood supply and works basically 2 ways to starve it of nutrients it needs to grow and denying it a was to get rid of waste out of the cells causing cells death ...

    Decadron has been used for a very long time it's a steroid that's usually prescribe as a premed to avoid a lot of the side affects of the Paclitaxel as with most steroids watch for candida in the mouth that's the white coating and with prolonged use it can cause cushing syndrome or a filling out of the face commonly referred to as moon face it's just a finning out and rounding of the face 

    My wife is stage 4 we were diagnosed in sept of 2015 and given 2 weeks by the doctor on the acute side of the hospital we got home and hospice was already at our door and we never asked for theM ordered by the same acute MD ... We ran into that doctor last week and he was very apologetic to us .....Christmas was a huge mile stone for us and next week Wednesday we celebrate her 54 th birthday all of which they said she would never see we are in good spirits receiving treatment at Loma Linda hospital we love it there it's an Adventist hospital and the nurses and doctor will pray with you whenever you are going through a rough patch ....we also start Paclitaxel and Ramuciramab this friday and even though we are nervous about what to expect we will remain positive I hope this help noone knows not doctors or nurse NOONE but God knows and he has a plan for everyone I prey for a full recovery and that this will be your testimony .... MD Anderson in Texas has been number one hospital in USA for like 8 years our pastors wife recently diagnosed at Loma Linda after being misdiagnosed at kaiser for 6 years went there for a second opinion we were also misdiagnosed for kaiser for over a year they could have found it at stage 1 instead of 4 ... 

    Also one more thing I'd like to add not to scare you just something to be aware of and to watch for since you stated it spread to the lymph nodes it is very commen for the lymph nodes in the chest to be involved and it a a very common that they grow and start involving the SVC basically similar to your aorta but the main vein for the upper portion of the body once it's gets 50% or greater occluded it will not be able to drain properly and cause svc syndrome swelling of the upper part of the body and higher blood pressure in the upper part than the lower this is a very common and from my experience many doctors do not give you the big picture just keep you informed as needed ... This is what my wife's went to then to the lungs and since to liver is the filter for the blood it usually finds it's way there ... These medication are very good and I believe I read an article where even with stage 4 15 percent see remission don't loose faith God will never leave you he will never abandon you and I have seen the power of prayer

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited June 2016 #5
    Dale1972 said:

    ...

    That was a very long but also very informative post above basically the short answer is Pactitaxol coats the cromasomes so in the cells 3rd phase of life mitosis with cell decision it binds them and dose not allow them to split stopping replication since cancer cells divide rapidly it effects them more than normal cells throughout the body And it also triggers cell suicide Apoptosis ....rapidly deciding cells are also effected like in the gastrointestinal tract which may cause bleeding watch for black or tarry stools and the blood cells produced in the bone marrow in larger bones causing the drop in red and white blood cells and platelets used in clotting wear a mask and stay away from crowds and inform family and friends if they even think they might be getting sick to stay away... also hair most likely will become brittle and fall out and the cells  in your mouth also watch for mouth sores and ulcers I purchased my wife several different wigs and styles when she was diagnosed before she started treatment so she already had options and made it a little easier on her......also it has a short half life of 5.6 hours  and is usually infused I. A couple hrs so no going home on a pump and avoid coffee this has shown to block its affectiveness it's is metabolized in the liver so watch the whites in his eyes and skin color avoid the sun wear minimum SPF 15 and never go outside without a hat and sun glasses his nail bed most likely will change color and darkening of tha skin anywhere he has received radiation in the past 

    the Cyramza http://chemocare.com/chemotherapy/drug-info/ramucirumab.aspx this is a very new targeted medicaction that works on angiogenesis basically if the cancer rumors canot get a blood supply they could not get any larger than a tumor ball that would fit on the tip of a sewing needle so this medication targets the blood supply and works basically 2 ways to starve it of nutrients it needs to grow and denying it a was to get rid of waste out of the cells causing cells death ...

    Decadron has been used for a very long time it's a steroid that's usually prescribe as a premed to avoid a lot of the side affects of the Paclitaxel as with most steroids watch for candida in the mouth that's the white coating and with prolonged use it can cause cushing syndrome or a filling out of the face commonly referred to as moon face it's just a finning out and rounding of the face 

    My wife is stage 4 we were diagnosed in sept of 2015 and given 2 weeks by the doctor on the acute side of the hospital we got home and hospice was already at our door and we never asked for theM ordered by the same acute MD ... We ran into that doctor last week and he was very apologetic to us .....Christmas was a huge mile stone for us and next week Wednesday we celebrate her 54 th birthday all of which they said she would never see we are in good spirits receiving treatment at Loma Linda hospital we love it there it's an Adventist hospital and the nurses and doctor will pray with you whenever you are going through a rough patch ....we also start Paclitaxel and Ramuciramab this friday and even though we are nervous about what to expect we will remain positive I hope this help noone knows not doctors or nurse NOONE but God knows and he has a plan for everyone I prey for a full recovery and that this will be your testimony .... MD Anderson in Texas has been number one hospital in USA for like 8 years our pastors wife recently diagnosed at Loma Linda after being misdiagnosed at kaiser for 6 years went there for a second opinion we were also misdiagnosed for kaiser for over a year they could have found it at stage 1 instead of 4 ... 

    Also one more thing I'd like to add not to scare you just something to be aware of and to watch for since you stated it spread to the lymph nodes it is very commen for the lymph nodes in the chest to be involved and it a a very common that they grow and start involving the SVC basically similar to your aorta but the main vein for the upper portion of the body once it's gets 50% or greater occluded it will not be able to drain properly and cause svc syndrome swelling of the upper part of the body and higher blood pressure in the upper part than the lower this is a very common and from my experience many doctors do not give you the big picture just keep you informed as needed ... This is what my wife's went to then to the lungs and since to liver is the filter for the blood it usually finds it's way there ... These medication are very good and I believe I read an article where even with stage 4 15 percent see remission don't loose faith God will never leave you he will never abandon you and I have seen the power of prayer

     

    Dale~Your wife is now N the best place 2 get the Best care

    Good morning Dale,

    While certainly Kaiser has some good doctors in their network, unfortunately your wife did not have one.  Yes, cancer cells multiply rapidly, and the longer one goes without even suspecting that “something is wrong”, the longer the cancer cells have time to multiply.  That first doctor was grossly uninformed when it comes to the steps to test and stage Esophageal Cancer.  He should have at least informed you of “palliative” treatments that are normally afforded to Stage IV Esophageal Cancer patients, even though an Esophagectomy wasn’t possible.  But like I say, there are doctors, and “THEN THERE ARE DOCTORS!”  And having “M.D.” initials after their name doesn’t necessarily mean they’re familiar with every disease.  That’s where “specialists” fit in.  The first thing is to always have a SECOND opinion to be certain the first group of doctors have prescribed the best treatment.  I’m sorry you and your wife have been denied months of precious time that could have been better spent elsewhere.   But now you’re on track to start treatments, and that’s the best news.

    Now your wife is going to be treated by MDAnderson.   There they will give her all the care she needs with some effective chemo drugs.  So I’ll just say we hope your wife has “minimum” side effects from the chemo drugs and the “maximum” good effects from their usage at the very same time. 

    Being cautious and knowing things to avoid is very helpful.  Yes, by all means stay out of the direct sun.  Our skin is very sensitive when we’re in chemotherapy.  Likewise staying away from as many “sick” people as possible is wise.  Since I’m known to post very long letters at times, I won’t repeat another one here, but I will suggest that your wife would find my post on “Things I learned during my own chemotherapy sessions, and how my oncologist helped me through it all.

    Your wife is still “young” at 54.  There’s still a lot of life to be lived to the fullest at that young age.  Our times are in His hand, I do believe.  Now you’re at one of the best hospitals in our wonderful United States of America, and may God guide you both as you go forward, and bless you with His peace.  

    Most sincerely, 

     Loretta Marshall, (William’s wife)  (His EC was Stage III, “T3N1M0” and we’re celebrating his 14th year of being in remission with no evidence of disease – Thank God)

     Here are things I learned that will be helpful to your wife. 

    https://csn.cancer.org/node/301646

    BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!

     

  • Dale1972
    Dale1972 Member Posts: 3
    Tyvm for that link it has a

    Tyvm for that link it has a tun of very useful information 

    i see you talk about whey powder my wife hates vanilla so our dietician referred us to sprouts or trader joes for a whey protein that's has no flavor you can't enev tell it's there you just sprinkle it over your meals we started at 1 scoop and are up to 2 scoops due to ongoing low albumen levels but total protein is finally good 

    also you talk about supplements our dietician also put us on the woman's one a day vitamin but the pills are huge with esophageal neoplasm he sent us back to trader joes and they have one that dissolves In your mouth it was very helpful

    you talk about boost supplement we use the boost plus 360 calories each drink can be bought over the counter at Walmart also comes in chocolate and started the boost very high calorie not sold in stores you can order it from nestle but it's actually much cheaper from Amazon I think it's like 530 calories but only comes in vanilla we find we find some Chocolate syrup mixed in makes it taste better

    once again I just wanted to say thank you for everything you do for everyone one this site  you do so much even though you face your own trials and hurdles every day wish I had someone like you back when we started I see that same look sitting in the waiting rooms in other peoples faces and try to offer help when I can 

    we also record all of our doctors visits like you do it's amazing when you listen to them how much information overload there is and how little we actually hear when we are in a stressful situation I have been in the medical field for 24 years and still have to do our research oncolog may not be my specialty but that sure dosent mean we can't learn you advice on not going to visits alone was a very common recurring theme in many books I read we never let my wife go anywhere to any appointment alone it really help to have a Good support system

    we do have palative care they are great at the pain management and trying to make sure your not too over medicated to have a high quality of life and they really take care of everything and I'll in all the gaps the other doctors might miss with stress and fear and everything in between 

    I never posted before but I am very happy I did and that there is a place to go to where we can talk and discuss this 

  • ebott614
    ebott614 Member Posts: 2
    Dale1972 said:

    ...

    That was a very long but also very informative post above basically the short answer is Pactitaxol coats the cromasomes so in the cells 3rd phase of life mitosis with cell decision it binds them and dose not allow them to split stopping replication since cancer cells divide rapidly it effects them more than normal cells throughout the body And it also triggers cell suicide Apoptosis ....rapidly deciding cells are also effected like in the gastrointestinal tract which may cause bleeding watch for black or tarry stools and the blood cells produced in the bone marrow in larger bones causing the drop in red and white blood cells and platelets used in clotting wear a mask and stay away from crowds and inform family and friends if they even think they might be getting sick to stay away... also hair most likely will become brittle and fall out and the cells  in your mouth also watch for mouth sores and ulcers I purchased my wife several different wigs and styles when she was diagnosed before she started treatment so she already had options and made it a little easier on her......also it has a short half life of 5.6 hours  and is usually infused I. A couple hrs so no going home on a pump and avoid coffee this has shown to block its affectiveness it's is metabolized in the liver so watch the whites in his eyes and skin color avoid the sun wear minimum SPF 15 and never go outside without a hat and sun glasses his nail bed most likely will change color and darkening of tha skin anywhere he has received radiation in the past 

    the Cyramza http://chemocare.com/chemotherapy/drug-info/ramucirumab.aspx this is a very new targeted medicaction that works on angiogenesis basically if the cancer rumors canot get a blood supply they could not get any larger than a tumor ball that would fit on the tip of a sewing needle so this medication targets the blood supply and works basically 2 ways to starve it of nutrients it needs to grow and denying it a was to get rid of waste out of the cells causing cells death ...

    Decadron has been used for a very long time it's a steroid that's usually prescribe as a premed to avoid a lot of the side affects of the Paclitaxel as with most steroids watch for candida in the mouth that's the white coating and with prolonged use it can cause cushing syndrome or a filling out of the face commonly referred to as moon face it's just a finning out and rounding of the face 

    My wife is stage 4 we were diagnosed in sept of 2015 and given 2 weeks by the doctor on the acute side of the hospital we got home and hospice was already at our door and we never asked for theM ordered by the same acute MD ... We ran into that doctor last week and he was very apologetic to us .....Christmas was a huge mile stone for us and next week Wednesday we celebrate her 54 th birthday all of which they said she would never see we are in good spirits receiving treatment at Loma Linda hospital we love it there it's an Adventist hospital and the nurses and doctor will pray with you whenever you are going through a rough patch ....we also start Paclitaxel and Ramuciramab this friday and even though we are nervous about what to expect we will remain positive I hope this help noone knows not doctors or nurse NOONE but God knows and he has a plan for everyone I prey for a full recovery and that this will be your testimony .... MD Anderson in Texas has been number one hospital in USA for like 8 years our pastors wife recently diagnosed at Loma Linda after being misdiagnosed at kaiser for 6 years went there for a second opinion we were also misdiagnosed for kaiser for over a year they could have found it at stage 1 instead of 4 ... 

    Also one more thing I'd like to add not to scare you just something to be aware of and to watch for since you stated it spread to the lymph nodes it is very commen for the lymph nodes in the chest to be involved and it a a very common that they grow and start involving the SVC basically similar to your aorta but the main vein for the upper portion of the body once it's gets 50% or greater occluded it will not be able to drain properly and cause svc syndrome swelling of the upper part of the body and higher blood pressure in the upper part than the lower this is a very common and from my experience many doctors do not give you the big picture just keep you informed as needed ... This is what my wife's went to then to the lungs and since to liver is the filter for the blood it usually finds it's way there ... These medication are very good and I believe I read an article where even with stage 4 15 percent see remission don't loose faith God will never leave you he will never abandon you and I have seen the power of prayer

     

    Thank you

    Just wanted to thank you for your informative reply.

    I know that we are not alone in our trials...I just don't, sometimes, get how to "count it all joy" 

    But I have (we have) gotten so much closer to God ...for that I am joyful!!

    You and your wife will be in my prayers Dale...

    Liz

     

     

  • AliceandRobbie
    AliceandRobbie Member Posts: 1
    Cyramza

    My husband and I grew up together went to Kindergarten together and graduated together.  36 years later we found each other on Facebook and were married in 2011.  He is my world and the love of my life.  We moved to our little bitty town when I retired in 2016 and he was diagnosed with Esophageal Cancer in September of 2017.  Our world shattered before our very eyes.  He had radiation and chemo .  This shrunk the tumor.  But it had spread to his liver and now his stomach.  He will begin Cyramza with Taxol and Neulasta this Tuesday.  He has had a feeding tube inserted because initially he could not eat.  I feel paralyzed and confused and I cry alot.  As I read these posts I find some hope that we have some time left,  but he has become weak and simply a shell of himself.  My heart is breaking.  And I find it hard to keep a stiff upper lip and a positive outlook.  I need someone to talk to...

  • paul61
    paul61 Member Posts: 1,391 Member
    At this point we just need to take things one day at a time

    Hello Alice,

    I am so sorry you find yourself here dealing with this disease so soon after your long-awaited retirement. I was like Robbie, after working for a company for 40 years I retired in “excellent” health and my wife and I prepared to enjoy our hard-earned retirement. Suddenly our life changed from retirement related plans to a never-ending series of tests, treatments, and more tests. I went from an active 150 lb. 61-year-old to a weak inactive 107 lb. cancer patient.

    My wife went from looking forward to our retirement travel plans to learning how to manage a feeding tube and finding things at the grocery store that I could actually swallow and hold down. And of course, we were both scared to death. That was eight years ago.

    We were fortunate to find good doctors, and with the help our wonderful friends and Church family we completed treatment and I am still here and back to enjoying the things I enjoy with the people I love.

    I know it is frustrating to watch Robbie struggle with treatment and feel like there is not very much you can do to change things, but I can tell you from experience that having you there, helping him get through each day is a huge thing.

    We felt very overwhelmed at first, so many appointments, language and terms about my cancer and treatment that we did not understand, and fear about the potential side effects of the treatment that was prescribed. We found that we needed to stop looking into the future with anxiety, and start taking things one day at a time. Sometimes, when we were waiting for test results; one hour at a time.

    I know things look grim now but you will find other Stage IV survivors here who are doing well on targeted therapies like Herceptin, Keytruda, and Cyramza. Treatment of esophageal cancer has come a long way in the last ten years so please ignore the statistics you find on the internet they are almost always dated and do not take into consideration the cancer survivors age, health profile, or support system.

    Come here often with questions or just to vent. You will find people here who have been where you are and understand.

    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
    Eight Year Survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

  • GeriR
    GeriR Member Posts: 20
    Hi Alice.  I am so very sorry

    Hi Alice.  I am so very sorry to hear your story.  I can relate.  My husband and I have been together for 3 years.  We both came from difficult situations.  He lost his first wife in an accident several years ago and I had been in a bad marriage that ended several years ago.  We met and just clicked from the beginning.  We have been so happy and content in our lives and then came the diagnosis of EC in February of last year.  He had chemo/radiation, then surgery this past August.  Unfortunately, he was diagnosed with metastasis to the right hip area and now to the left adrenal gland.  We saw the Dr yesterday and he will start Folfox in 2 weeks.   I have cried so many tears and have asked "why?" so many times.  None of it makes any sense.  My faith in God has made things easier and tolerable.  I have learned to be thankful for the present moment and I try not to project into the future and worry about what might happen.  I know that is hard to do but when your mind goes to those scary unknown places, just try and change channels and think of things to be thankful for.  It does help some.  It's very hard watching the man you love weaken and hurting.  I'm glad you're on this site because it does help to see the positive stories here.  Again, I am so very sorry for all you and your husband are going through.  I will keep you both in my prayers.

    Geri