38 and diagnosed with stage 4 esophageal cancer

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Comments

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    1979bmg said:

    How have you been Ed? 

    How have you been Ed? 

     

    Sorry I just don't check this very often.

    Doing Well Enough.

    Thanks for asking, I'm doing well enough.  I'm testing clean, so that's the biggest thing.  I'm somewhat held back by lung problems that affect my breathing.  And I was in the hospital for a few days a few weeks ago with diabetic ketoacidosis.  But I'm mostly just living my life.  I can't believe I've been on this ride for as long as I have, 13 years and still going.  I'm coming in on 10 years of the weekly herceptin and the plan is to keep going with it.  My oncologist said something striking to me at a recent appointment.  I made a joke about beating terminal cancer and she pointed out that it was terminal twice, not just the once.  That took me aback a bit. But, like I said, I'm mostly just enjoying myself hanging out with Wifey and our critters. 

    Stay Well,

    Ed                                  

  • paul61
    paul61 Member Posts: 1,384 Member
    edited September 2021 #83

    Doing Well Enough.

    Thanks for asking, I'm doing well enough.  I'm testing clean, so that's the biggest thing.  I'm somewhat held back by lung problems that affect my breathing.  And I was in the hospital for a few days a few weeks ago with diabetic ketoacidosis.  But I'm mostly just living my life.  I can't believe I've been on this ride for as long as I have, 13 years and still going.  I'm coming in on 10 years of the weekly herceptin and the plan is to keep going with it.  My oncologist said something striking to me at a recent appointment.  I made a joke about beating terminal cancer and she pointed out that it was terminal twice, not just the once.  That took me aback a bit. But, like I said, I'm mostly just enjoying myself hanging out with Wifey and our critters. 

    Stay Well,

    Ed                                  

    Great to see your post

    Hi Ed,

    It is great to see that you are still doing well. I am like you just taking each day as it comes. I am 12 years out and as I am also 73 I am dealing with the usual "old man" issues. But happy to be a cancer survivor.

    You know what they say "Every day above ground is a GREAT DAY!"

    Best Regards,

    Paul

  • 1979bmg
    1979bmg Member Posts: 48 Member
    edited February 2022 #84

    4 1/2 years since Diagnosis, 18 months since the surgery, latest CT scans show no evidence of recurrence or metastasis

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited February 2022 #85

    Hello,

    4 1/2 years is a long time on this ride. Congratulations on your upcoming 5 year mark. Not a lot of stage IV folks get to five years, you are providing hope to the folks just starting on this journey. I'm glad your CT scan was clean. Hopefully, you just keep on keeping on.

    Best Wishes,

    Ed

  • Susan26
    Susan26 Member Posts: 2 Member

    How are all of you guys doing? My husband just had his first treatment for this.

  • 1979bmg
    1979bmg Member Posts: 48 Member

    Still doing great. The only real problems I struggle with at the moment are night time reflux/aspiration and fatigue that comes and goes from the 3 solid years of treatment.

    I've had covid twice this year, shook it off about as good as could be expected.

  • lokiandanubis
    lokiandanubis Member Posts: 4 Member

    So happy to read your story! Ours is similar but my hubby is 58. He is in amazing shape & just the week before diagnosis was skiing and mountain biking like a 38yo😩 (if I do say so myself…)

    Everyone was shocked to find (especially us!) he has stage 4 esophageal cancer. It had spread to the lungs but just around the esophagus, one lymph node but no other organs. And the lung nodules had begun shrinking by themselves even before chemo. A weird bump on his cheek is what brought us in. 5th cycle of chemo tomorrow. Repeat PetCTscan after cycle 6.

    In hindsight he did have many of the symptoms you described over the last couple years. I am so grateful to have stumbled upon your story and to see you are doing well. Our oncologist was pretty fatalistic at first, but after getting a second opinion, we are all more optimistic.

  • lokiandanubis
    lokiandanubis Member Posts: 4 Member

    Oops I didn’t reply to your story just added a comment, hope to read more updates from you!

  • 1979bmg
    1979bmg Member Posts: 48 Member

    Still clean scans as of September 15th, 2022. No evidence of recurrence or metastatic disease. That makes just over 5 years since my stage 4 diagnosis and 25 months since esophagectomy surgery.

  • 1979bmg
    1979bmg Member Posts: 48 Member
    edited December 2022 #93

    It looks like unfortunately there has been a change.


    I've had laryngitis on and off for the past 3 weeks. It turns out I have a paralyzed vocal chord. The hope was that it was viral or at the worst late onset damage from radiation. The ENT doctor wanted to do a CT to rule out anything worse given my health history.


    Unfortunately there appears to be a 2cm by 3cm mass pressing on a vocal chord nerve. It is in the same area (mediastinum) as one of my previous tumors when I was first diagnosed in 2017.


    I will be in touch with my surgeon, oncology and possibly radiation doctor to see what can be done.

  • 1979bmg
    1979bmg Member Posts: 48 Member

    Just an update, and Just to offer some words of encouragement, especially for stage 4 patients, I am still here and still going strong nearly 6 years later

    My PET scans and CT showed the mediastinal node (upper Right paratracheal)to be the only area of cancer.

    In January I had surgery to remove the node and the 2cm x 3cm mass surrounding it.

    The cancer itself or the surgery damaged or destroyed my right vocal chord nerve, so my right vocal chord is paralyzed. I can still talk, but my voice easily gets wheezy and raspy...that was the least of my worries anyway, down the road I can try to do surgery or therapy to try and remedy it.

    Signatera blood testing showed active microscopic residual tumor cells, a very low level of .09. "Positive below analytical range." Meaning I have an extremely high risk of another recurrence.


    My CT scans a the end of March were clear.

    I restarted chemotherapy and immunotherapy (Nivolumab and 5fu) in April. Tuesday will be my 78th treatment, (and 3rd of these treatments) not counting the radiation I did.

    Other than feeling like trash for 3 to 4 days every two weeks, I am still here and still doing great. And I'll keep on fighting this as God gives me strength.