Stage IV Esophageal Inoperable

Hello Rtbatch,

You seem to be very much on top of things with your care, which is the most important thing you can do.  Unfortunately, as you've noticed, EC wins a lot of fights.  That doesn't mean there's no hope, though.  I was stage III my 1st go-around with EC and was stage IV (recurrence in a lung) the 2nd time.  My doctor told me that, "from where you are, most people live about 7-8 months, some a couple of months more, some a couple of months less, but figure on 7-8 months.  And one or two people have had a complete response and are living their lives."  She didn't offer 1 or 2% hope, she said one or two people total.  That was 2011.  I'm still here and testing clean.  My path out was herceptin which had recently been approved for stage IV EC.  That won't be your path as you are HER2 negative, but maybe it'll be Keytruda.  17% is a much better shot than I was given and I'm 6 years in remission.  My doctor says she never uses the word "cured" for stage IV, but last year she did use the word "remission", and I'll take it.  

I hope you find a workable path out from under your grim prognosis.  Please be the next one to beat this SOB.  Stay strong and never quit.

Ed

1979bmg said:

13 rounds of chemo for me and receiving #14 as I type this.

I'm not sure of your age, Im 38, but I'm in the same boat as you. Diagnosed stage IV on August 24th, one big tumor right above the GE junction and another in my mid esophagus. A thin band of growing tissue connecting the two, my esophagus was over 70% blocked. It didn't spread to any organs that they can tell, but at least 8 lymph nodes all around my chest and abdomen. Remarkably I could still eat whatever I wanted with a bit of forcing, though it was starting to get quite painful. I could distintly feel both tumors for well over 2 months before diagnosis.

 

Like you I was not offered surgery or radiation, It had already spread too far. I was offered chemo and immunotherapy: atezolizumab, oxaliplatin, leucovorin, 5fu, initially I was given steroids for anti-nausea, those were pulled due to them possibly interfering with atezolizumab. I now take eloxi and emend prior to treatment, and 2 different anti nausea pills (only need them for 3 days or so after treatment. ) Today is my first treatment where they have stopped oxaliplatin, Neuropathy in hands and feet is suddenly getting a lot worse. May bring it back at a reduced dose if those symptoms subside.

 

Things looked pretty grim back in August, I had one set of lymph nodes in my upper chest swelled up literally bigger than a golf ball, it literally had my trachea and esophagus slightly bent. The stuff was literally getting ready to explode and spread to all of my organs.

 

3 sets of scans since beginning treatment (Early November, Late Dec, and 2 weeks ago), the total mass of the cancer has decreased by half or more at every scan. I only have 1 infected lymph node left, the one that was literally golf ball sized, and it is now miniscule in size even compared to some of the other ones that were infected. 

 

After only 2 treatments, the swallowing problem was nearly gone, and the tumors were barely visible on my first follow-up scan . 

 

I was given no prognosis from the beginning, but my Outlook was "pretty darned poor" as well. It is now possible that I may have a complete response by sometime this summer. 

 

I firmly believe that diet and exercise are key in fighting this, you will find out very quickly that chemo after time ends up being way worse than the cancer ever was. I thought I was going to be a warrior at this after 10 rounds, but rounds 11 to 13 brought me back to reality. Still though, I am handling it remarkably well for someone who was a dead man walking back in August.

If you are able to exercise, even walking short distances and working your way up, by all means, do it. Your body will thank you later. Also a well balanced, healthy diet.

 

I am a realist and borderline pessimist myself, but remember that doctors are trained to throw statistics at people. I was told that in my case maybe a 40% to 50% total response rate was about the best I could hope for. I saw that after only 4 treatments, and I have more than beaten statistics so far.

 

One thing you may want to look into is taking Tylenol instead of Advil. Most chemo to the best of my knowledge gets filtered through the kidneys, and so does Advil. Both of these together can wreak havoc on the kidneys of even the healthiest people. Tylonol gets filtered more through the liver instead, as long as yours is still healthy I would ask about that.

Its really good to see the response for chemo . Am praying you will get complete response and with atezolizumab you will have lot more many many years to live cancer free .

1979bmg said:

13 rounds of chemo for me and receiving #14 as I type this.

I'm not sure of your age, Im 38, but I'm in the same boat as you. Diagnosed stage IV on August 24th, one big tumor right above the GE junction and another in my mid esophagus. A thin band of growing tissue connecting the two, my esophagus was over 70% blocked. It didn't spread to any organs that they can tell, but at least 8 lymph nodes all around my chest and abdomen. Remarkably I could still eat whatever I wanted with a bit of forcing, though it was starting to get quite painful. I could distintly feel both tumors for well over 2 months before diagnosis.

 

Like you I was not offered surgery or radiation, It had already spread too far. I was offered chemo and immunotherapy: atezolizumab, oxaliplatin, leucovorin, 5fu, initially I was given steroids for anti-nausea, those were pulled due to them possibly interfering with atezolizumab. I now take eloxi and emend prior to treatment, and 2 different anti nausea pills (only need them for 3 days or so after treatment. ) Today is my first treatment where they have stopped oxaliplatin, Neuropathy in hands and feet is suddenly getting a lot worse. May bring it back at a reduced dose if those symptoms subside.

 

Things looked pretty grim back in August, I had one set of lymph nodes in my upper chest swelled up literally bigger than a golf ball, it literally had my trachea and esophagus slightly bent. The stuff was literally getting ready to explode and spread to all of my organs.

 

3 sets of scans since beginning treatment (Early November, Late Dec, and 2 weeks ago), the total mass of the cancer has decreased by half or more at every scan. I only have 1 infected lymph node left, the one that was literally golf ball sized, and it is now miniscule in size even compared to some of the other ones that were infected. 

 

After only 2 treatments, the swallowing problem was nearly gone, and the tumors were barely visible on my first follow-up scan . 

 

I was given no prognosis from the beginning, but my Outlook was "pretty darned poor" as well. It is now possible that I may have a complete response by sometime this summer. 

 

I firmly believe that diet and exercise are key in fighting this, you will find out very quickly that chemo after time ends up being way worse than the cancer ever was. I thought I was going to be a warrior at this after 10 rounds, but rounds 11 to 13 brought me back to reality. Still though, I am handling it remarkably well for someone who was a dead man walking back in August.

If you are able to exercise, even walking short distances and working your way up, by all means, do it. Your body will thank you later. Also a well balanced, healthy diet.

 

I am a realist and borderline pessimist myself, but remember that doctors are trained to throw statistics at people. I was told that in my case maybe a 40% to 50% total response rate was about the best I could hope for. I saw that after only 4 treatments, and I have more than beaten statistics so far.

 

One thing you may want to look into is taking Tylenol instead of Advil. Most chemo to the best of my knowledge gets filtered through the kidneys, and so does Advil. Both of these together can wreak havoc on the kidneys of even the healthiest people. Tylonol gets filtered more through the liver instead, as long as yours is still healthy I would ask about that.

Hello 1979bmg,

I am so happy to see your positive posts.  Please be the next miracle.  The world needs more.

Best wishes,

Ed

Cindy,

Can you give more details about what your wife is doing as far as the naturopathic stuff?  (More information about what she is drinking, measurements, how many times per day, etc.?). My mother is still waiting for test results to show the stage of her cancer, but I am interested in helping her fight this by nutrition as well as through conventional medicine once we get the diagnosis.

Deathorglory said:

Hello

Hello Rtbatch,

You seem to be very much on top of things with your care, which is the most important thing you can do.  Unfortunately, as you've noticed, EC wins a lot of fights.  That doesn't mean there's no hope, though.  I was stage III my 1st go-around with EC and was stage IV (recurrence in a lung) the 2nd time.  My doctor told me that, "from where you are, most people live about 7-8 months, some a couple of months more, some a couple of months less, but figure on 7-8 months.  And one or two people have had a complete response and are living their lives."  She didn't offer 1 or 2% hope, she said one or two people total.  That was 2011.  I'm still here and testing clean.  My path out was herceptin which had recently been approved for stage IV EC.  That won't be your path as you are HER2 negative, but maybe it'll be Keytruda.  17% is a much better shot than I was given and I'm 6 years in remission.  My doctor says she never uses the word "cured" for stage IV, but last year she did use the word "remission", and I'll take it.  

I hope you find a workable path out from under your grim prognosis.  Please be the next one to beat this SOB.  Stay strong and never quit.

Ed

Hey Ed,

I saw your comment and your situations sounds really close to that of my dad's. He has stave IV EC and has spread to his lungs, the thing is tho a mass has grown in the throat (esophagus removed last year), which they found when he was doing his regular dialations. His situation is pretty severe but I still have hope. He has lost a lot of weight but is going to be reviewed to see if he can start treatment. Any suggestions you can give as it relates to diet and treatment options?

Daina