Where does one start on this journey

jymbob
jymbob Member Posts: 2
edited March 2014 in Esophageal Cancer #1
New here and wanted to say hello to you all. 57 yr old male married 31 yrs 2 wonderful grown children and a loving wife still by my side.
I was diagnosed with stage 4 esophageal cancer just Tuesday past, we are devastated at the news and feel so lost. I am hoping to find info on this site through members with the same diagnosis to help us learn what is in store for us over the next 6 to 8 months.
jymbob

Comments

  • oriontj
    oriontj Member Posts: 375
    #2
    Check for clinical trials using Erbitux
    You can check on line to see where it might be offered. You never know which arm you'll be in but it's worth a try. That's what they gave my husband last Sept along with other drugs once a week and radiation every day...not eligible for surgery. He was clear as of April and will go back July 2nd..which is why we're going on our trip now...never know what's ahead..

    Big University hospitals have trials like this.

    orion
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • Clearblue
    Clearblue Member Posts: 186
    #5
    unknown said:

    This comment has been removed by the Moderator

    In all sincerity
    Hi there,
    I am reposting a part of my first post on this discussion board and added more in response to your posts.

    My wife has Fanconi Anaemia, a condition which gives rise to cancerous tumors. Since 1996, she has had base of tonge-squamua cell carcinoma (scc) , aesophogectomy (scc) & gastric pull-up - Prof Orringer - Anne Arbor Michigan- a unique, professional and simply amazing human being(2008), larengpharingial scc, lung scc. There are differences of opinion weather lung was secondry or not.

    So she has amazingly fought her way out of hospital each time. She' gone through the nutrician, dumping, eating, swallowing, peg, dilations, etc etc etc difficulties like alot of you here.

    Fanconi Aneamic people have hypersensitivity to chemo which can be lethal and radiation has been ruled out too. Owing to the above and given her latest pharynx and lung lesions,"we" are on Erbitux only.

    I'd like to know if anyone on this site knows of anyone who has Fanconi Aneamia. There are few survivng adults around, yet alone any info regarding case treatments . I cant tell you how wretched this is.

    I dont know where to start really, but i thought that if the lung lesion was from the original aesoph cancer, maybe i should be on this discussion board. As it is difficult for me to take in vast amounts of info, i have tried my best to keep abreast of what doctors say around me.

    Having read the latest posts here, i cannot help feeling that i havent done enough.
    We stand befor "our" next PET CT on June 21, to see if the erbitux has in fact had any effect on preveiously discovered microscopically visible cell pharynx.

    It looks like i need to go back into my wifes records and state everything shes had and goner through. I have a "politically correct" relationship with the Med team, who have followed her disease and recoveries. This "politically correct relationship" has had its ups and downs.

    We are so tired. The aesoph surgeon of two years ago, believes that the lung was actaully from the orig esoph cancer and his advice has been to enjoy life as much as we can, while we can.

    I wish i could just find someone who would be our personal on hand manager.Im not even sure which post i should be on anymore. Sorry to put such a damper on the amazing previouse 2 or 3 posts here.
    We are so tired. We wait again......
    In all sincerity and admiration for all of you

    Clear. B.
  • jymbob
    jymbob Member Posts: 2
    #6
    Clearblue said:

    In all sincerity
    Hi there,
    I am reposting a part of my first post on this discussion board and added more in response to your posts.

    My wife has Fanconi Anaemia, a condition which gives rise to cancerous tumors. Since 1996, she has had base of tonge-squamua cell carcinoma (scc) , aesophogectomy (scc) & gastric pull-up - Prof Orringer - Anne Arbor Michigan- a unique, professional and simply amazing human being(2008), larengpharingial scc, lung scc. There are differences of opinion weather lung was secondry or not.

    So she has amazingly fought her way out of hospital each time. She' gone through the nutrician, dumping, eating, swallowing, peg, dilations, etc etc etc difficulties like alot of you here.

    Fanconi Aneamic people have hypersensitivity to chemo which can be lethal and radiation has been ruled out too. Owing to the above and given her latest pharynx and lung lesions,"we" are on Erbitux only.

    I'd like to know if anyone on this site knows of anyone who has Fanconi Aneamia. There are few survivng adults around, yet alone any info regarding case treatments . I cant tell you how wretched this is.

    I dont know where to start really, but i thought that if the lung lesion was from the original aesoph cancer, maybe i should be on this discussion board. As it is difficult for me to take in vast amounts of info, i have tried my best to keep abreast of what doctors say around me.

    Having read the latest posts here, i cannot help feeling that i havent done enough.
    We stand befor "our" next PET CT on June 21, to see if the erbitux has in fact had any effect on preveiously discovered microscopically visible cell pharynx.

    It looks like i need to go back into my wifes records and state everything shes had and goner through. I have a "politically correct" relationship with the Med team, who have followed her disease and recoveries. This "politically correct relationship" has had its ups and downs.

    We are so tired. The aesoph surgeon of two years ago, believes that the lung was actaully from the orig esoph cancer and his advice has been to enjoy life as much as we can, while we can.

    I wish i could just find someone who would be our personal on hand manager.Im not even sure which post i should be on anymore. Sorry to put such a damper on the amazing previouse 2 or 3 posts here.
    We are so tired. We wait again......
    In all sincerity and admiration for all of you

    Clear. B.

    Thanx for you kind words
    The doctors diagnosis is stage 4B inoperable, has spread through the major organs as we were shown on the ct scans the liver is covered along with all the lymph nodes under the pancreas etc. I am located on the Okanagan Valley in BC Canada. The doctor stated we would begin palliative radiation immediately as in Monday. So far this is basically all we know. medically, As I stated we were just final diagnosed on 3 days ago.
    jym
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #7
    jymbob said:

    Thanx for you kind words
    The doctors diagnosis is stage 4B inoperable, has spread through the major organs as we were shown on the ct scans the liver is covered along with all the lymph nodes under the pancreas etc. I am located on the Okanagan Valley in BC Canada. The doctor stated we would begin palliative radiation immediately as in Monday. So far this is basically all we know. medically, As I stated we were just final diagnosed on 3 days ago.
    jym

    Welcome
    Hi Jymbob
    Welcome to the EC family. I was a caregiver for my dad. He passed away in March from EC, which metasthsized to his liver. He too was at stage IV.He too was inoperable. He had six weeks of chemo and radiation. He did quite well for about 12 months. Once it went to his liver, he went down hill, physically and mentally. I do agree with the others about always getting a second opinion. I can not believe with all of the organs that are effected, you were just recently diagnosed! I would think that you would have a lot of symptoms, and would have gotten to the dr. and diagnosed sooner.
    I do not know anything about the medical or cancer centers in Canada. I am sure there will be others here that will reply, that are familiar with Canada. Best of luck to you, We will be praying for you. Stay positive. Your mental outlook is half the battle. Keep in touch.
    Tina
  • Unknown
    Unknown
    #8
    jymbob said:

    Thanx for you kind words
    The doctors diagnosis is stage 4B inoperable, has spread through the major organs as we were shown on the ct scans the liver is covered along with all the lymph nodes under the pancreas etc. I am located on the Okanagan Valley in BC Canada. The doctor stated we would begin palliative radiation immediately as in Monday. So far this is basically all we know. medically, As I stated we were just final diagnosed on 3 days ago.
    jym

    This comment has been removed by the Moderator
  • cfight
    cfight Member Posts: 69
    #9
    Hi Jymbob,
    I wish my father
    Hi Jymbob,

    I wish my father was on this site. He was diagnosed with Stage IV EC in December with mets to bone and started chemo the first week of the new year (2010). He biggest side effect from treatment has been fatigue along with the usual -- loss of hair (a little), weird taste for foods and some digestive problems. He has his good days where he can go mow the lawn or take a walk. He also has not so good days. One of the things we learned recently was keeping hydrated. My father would get fluids during every treatment. This isn't enough so he's getting fluids in between treatment as well to help keep his energy up. I hope this helps.

    As a daughter of someone with EC, the initial diagnosis was quite scary. Right now, I keep my focus on the day vs. what we might encounter next. It has been the hardest thing for me to "get."

    I am sending positive thoughts to you and your family.

    Carolyn
  • dragonflymom
    dragonflymom Member Posts: 46
    #10
    Welcome Jym. It sounds like
    Welcome Jym. It sounds like you have been through a whirlwind lately. My mom (age 55) is stage IVa. However she has had complications and even though her scans are clear right now, she will have no other treatments if/when this cancer comes back.

    You are about to fight one ornery beast but you do what you have to do. I'm sure your kids will back you 100%. Take care, you are in my thoughts.

    Amy
  • mmr19
    mmr19 Member Posts: 75
    #11
    Welcome Jymbob
    Welcome to this site Jymbob. You have come to the right place. The people here are amazing. They are helpful,informative and inspirational.

    My husband is also stage IVb-inoperable. And though this road has had many potholes and detours for him, he forges ahead. We too have just celebrated our 31st anniversary. We are in this battle together, just as you and your wife will fight this EC beast.

    While no two patients are alike, there is a wealth of information on this site. Take notes of things you want to ask your doctor. I keep a journal of our days and all that we go through. It has been quite helpful at times to be able to look back at what exactly happened or how he felt or what we did.

    And especially now...when you are quite numb from the news, it helps just to express yourself.

    Please keep in touch (your wife,too).

    Thoughts and prayers coming your way....

    Marta

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