Stage 4 spread to lymph nodes & Brain

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Skatygurl
Skatygurl Member Posts: 3
in Esophageal Cancer #1

Hello my name is Shannon I have some questions regarding my Mom. She is 74 and wa diagnosed about 5-6 months ago. Stage 4 esophageal cancer (GE junction) spread to a few lymph nodes and caused a small lesion in her brain. We did radiation on her brain and it shrunk a little bit. On July 5th after her 6th round of chemo they are going to scan her again to see how she is responding to chemo. Has anyone had any good results after their first scan? She suffers so much latelty so it is so hard for me to decide whether the cancer or the chemo is affecting her... Any advice or thoughts would help us :) 

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  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #2
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    Hello Shannon

    Hello Shannon,

    I was stage III my first time around.  I had chemo/radiation, then surgery, then bonus chemo.  I was thought to be clean, but I had a second go-around a few years later when it recurred in a lung (stage IV in 2011).  That time, radiation and surgery weren't options because it was "on the loose".  It was chemo only at that point.  I tested HER2/NEU +++, so herceptin was added to my chemo (folfox).  I was given 7-8 months and to all the world I appeared to be on that schedule.  It turned out for me that the folfox/herceptin just about killed me, but it was actually doing its job and killing the cancer.  Once I stopped the chemo, I (VERY) slowly regained my strength.  I've been on here a few years saying "I've tested clean ever since", but my last CT scan (3 weeks ago) showed a previously unnoticed nodule in the same lung as my last one.  I'm hopeful it's nothing, but as you are well aware, it's a scary game we're playing.

    I had a scare where my oncologist thought the EC may have spread to my brain (b/c that's one of its favorite spots to spread to).  I fell/collapsed/passed out a couple of times, but it turned out that that was just the folfox beating me up.

    Not that this is anything you want to hear, but it is one guy's personal experience.  Hope it offers you some insight into what you're dealing with.

    Ed

  • Skatygurl
    Skatygurl Member Posts: 3
    #3
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    Deathorglory said:

    Hello Shannon

    Hello Shannon,

    I was stage III my first time around.  I had chemo/radiation, then surgery, then bonus chemo.  I was thought to be clean, but I had a second go-around a few years later when it recurred in a lung (stage IV in 2011).  That time, radiation and surgery weren't options because it was "on the loose".  It was chemo only at that point.  I tested HER2/NEU +++, so herceptin was added to my chemo (folfox).  I was given 7-8 months and to all the world I appeared to be on that schedule.  It turned out for me that the folfox/herceptin just about killed me, but it was actually doing its job and killing the cancer.  Once I stopped the chemo, I (VERY) slowly regained my strength.  I've been on here a few years saying "I've tested clean ever since", but my last CT scan (3 weeks ago) showed a previously unnoticed nodule in the same lung as my last one.  I'm hopeful it's nothing, but as you are well aware, it's a scary game we're playing.

    I had a scare where my oncologist thought the EC may have spread to my brain (b/c that's one of its favorite spots to spread to).  I fell/collapsed/passed out a couple of times, but it turned out that that was just the folfox beating me up.

    Not that this is anything you want to hear, but it is one guy's personal experience.  Hope it offers you some insight into what you're dealing with.

    Ed

    Hi Ed,

    Hi Ed,

    Thank you so much for sharing your story with me, what a blessing to have met you on this site an I will keep you in my prayers. My Mom is receiving 2 different types of chemo and one of the brands make her super sensitive to cold. Lately we have been having a tough time with even room temperature fluids as well and now she is losing even more weight. I just wish there was something more that I could do to ease her pain. I am so nervous about her next scan and I know that she is as well.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited June 2017 #4
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    Skatygurl said:

    Hi Ed,

    Hi Ed,

    Thank you so much for sharing your story with me, what a blessing to have met you on this site an I will keep you in my prayers. My Mom is receiving 2 different types of chemo and one of the brands make her super sensitive to cold. Lately we have been having a tough time with even room temperature fluids as well and now she is losing even more weight. I just wish there was something more that I could do to ease her pain. I am so nervous about her next scan and I know that she is as well.

    Sounds Familiar

    Yeah, what you're describing sounds familiar.  I lost 55 pounds from the first time around ( I wasn't fat to begin with) and was reduced to skin and bones.  I went from165 to 110.  It took me 8 years to regain all of the weight.  I'm actually 5 pounds heavier now than I was pre-cancer.  My second time around (stage IV recurrence in a lung) I was treated with folfox.  The OX in Folfox is Oxaliplatin.  That sounds like what your mom is receiving.  It makes you VERY sensitive to cold things.  Drinks, food, hands, whatever.  I can only tell you that it gets better when you stop, but some of the neuropathy can be permanent (it was for me).  

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