Update: We don't need radiation or a stent!

JaneE2366
JaneE2366 Member Posts: 289 Member
edited March 2014 in Esophageal Cancer #1
Good Morning Everyone,
Just a quick update.....you talk about a roller coaster ride.
Charlie developed swallowing problems....never had the problem before. Since his last PET in May showed activity in the esophagus and stomach, we all assumed the cancer was back. Dr wanted to be agressive (with our blessing) so we started chemo right away and looked into radiation and or a stent. Spoke with the radiation oncologist first and got all the info we needed. He explained he would do a CT scan first to pinpoint the problem. Then we were off to the GI dr on Monday. He explained the stent. He scheduled a endoscopy for Wed so we would know exactly what we were dealing with. We weren't sure which way to go....stent.....radiation....maybe both. We prayed to God to help us make the right decision. Well it worked. Decision has been made for us. Endoscopy showed nothing in the esophagus! It is possible the chemo may have already taken care of it...but right now there is no need for a stent. GI dr said it wasn't even that hard to get Charlie scoped. Of course we know it doesn't mean there isn't something else lurking on the outside of the esophagus (or elsewhere) causing the swallowing problems. He did find Charlie has developed an ulcer and that could have been the activity seen on the May PET. He also did some biopsies and they came back clear. He does now have Barretts....never had it before.
Yesterday we were off to see the oncologist and another round of chemo and the oncologist said there is no need for radiation at this point. We will do another round of chemo next week....take a week off.....take a little vacation...come back and repeat the PET and do 2 more rounds of chemo if necessary.
We were convinced this could have been the beginning of the end.....but it's not...and I am mad at myself for not having more faith. God listens! So please everyone....there is always hope.....don't give up....and try your best to stay strong.
Jane

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Congratulations!
    Hello Jane and Charlie
    Thanks for your wonderful post!! Hip Hip Hooray! So so glad the scope went well, and there was no activity in the esophagus. But...what is causing the swallowing problem then? The Barretts? How is that treated? Did they see any scar tissue closing off the esophagus? Sorry for so many questions. Enjoy the good news, and enjoy the break from chemo! Keep in touch. God always keeps his promises!
    Tina
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #4
    unknown said:

    This comment has been removed by the Moderator

    Thank you
    Thank you William and Loretta for your reply and prayers.
    We were definitely leaning towards not having the stent. Our oncologist told us when they work, they are great....but when they don't, it can be very unpleasant. We really didn't want to take the chance....but as it turns out....it's not necesssary.
    I am praying we stay on the high side of the roller coaster ride for a long time.
    We just got a surprise visit from my mom and dad. They are 85 and drove down to FL from Charleston, SC....8 hours. We will see them in a week when we all go to Myrtle Beach but they just had to come now and see Charlie for themselves. God Bless them!!
    Jane
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #5
    Tina Blondek said:

    Congratulations!
    Hello Jane and Charlie
    Thanks for your wonderful post!! Hip Hip Hooray! So so glad the scope went well, and there was no activity in the esophagus. But...what is causing the swallowing problem then? The Barretts? How is that treated? Did they see any scar tissue closing off the esophagus? Sorry for so many questions. Enjoy the good news, and enjoy the break from chemo! Keep in touch. God always keeps his promises!
    Tina

    They really aren't sure what
    They really aren't sure what is causing the swallowing problems. It could be the Barretts.....it could be a side effect of the chemo.....could be a tumor or lymph node on the outside of the esophagus pressing on the esophagus and causing a stricture. Hopefully the PET will tell us....actually I am hoping it shows nothing and then we would have to assume it is the Barretts or the chemo. Personally I think it is the Barretts.
    Barretts is just treated with medication....controls the acid.
    Take care,
    Jane
  • Unknown
    Unknown
    #6
    JaneE2366 said:

    They really aren't sure what
    They really aren't sure what is causing the swallowing problems. It could be the Barretts.....it could be a side effect of the chemo.....could be a tumor or lymph node on the outside of the esophagus pressing on the esophagus and causing a stricture. Hopefully the PET will tell us....actually I am hoping it shows nothing and then we would have to assume it is the Barretts or the chemo. Personally I think it is the Barretts.
    Barretts is just treated with medication....controls the acid.
    Take care,
    Jane

    This comment has been removed by the Moderator
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #7
    unknown said:

    This comment has been removed by the Moderator

    Weight
    William,
    That picture was taken last Oct (Amelia Island, FL...our 35th wedding anniversary.) Charlie's weight is about the same as it was then. Flucuates between 240 & 245.
    When he was first diagnosed in March 09, his weight was around 275. When he went into the hospital for his first round of chemo, he was up to 295 due to all the fluid he had in his belly. At that point they removed 7.5 liters of fluid. (They had removed 4 liters 2 weeks prior when we he was in the ER.) We thank God everyday that the fluid has not returned.
    This time last year (when he was done his his 4 rounds of chemo) he was down to 218 lbs. Gradually over the last year he put on 25 - 30 lbs. Recently he just started losing again...but only about 5 - 10 lbs. I am sure it is due to the chemo...doesn't have as much of an appetite and of course the trouble swallowing makes things difficult. But that has leveled off. Must be the ice cream he eats every night. I was never happy with his weight but now I am happy he had the extra pounds on him.
    Take care William...sounds like you have been busy. Enjoy your weekend.
    Jane
  • Donna70
    Donna70 Member Posts: 852 Member
    #8
    JaneE2366 said:

    Weight
    William,
    That picture was taken last Oct (Amelia Island, FL...our 35th wedding anniversary.) Charlie's weight is about the same as it was then. Flucuates between 240 & 245.
    When he was first diagnosed in March 09, his weight was around 275. When he went into the hospital for his first round of chemo, he was up to 295 due to all the fluid he had in his belly. At that point they removed 7.5 liters of fluid. (They had removed 4 liters 2 weeks prior when we he was in the ER.) We thank God everyday that the fluid has not returned.
    This time last year (when he was done his his 4 rounds of chemo) he was down to 218 lbs. Gradually over the last year he put on 25 - 30 lbs. Recently he just started losing again...but only about 5 - 10 lbs. I am sure it is due to the chemo...doesn't have as much of an appetite and of course the trouble swallowing makes things difficult. But that has leveled off. Must be the ice cream he eats every night. I was never happy with his weight but now I am happy he had the extra pounds on him.
    Take care William...sounds like you have been busy. Enjoy your weekend.
    Jane

    what a great story
    Hi Jane,
    Just so happy that everything has turned out so well!!! I love your last lines about never giving up hope!!!! Have some fun and celebrate. So happy for you both. take care, prayers always,
    Donna70
  • Unknown
    Unknown
    #9
    JaneE2366 said:

    They really aren't sure what
    They really aren't sure what is causing the swallowing problems. It could be the Barretts.....it could be a side effect of the chemo.....could be a tumor or lymph node on the outside of the esophagus pressing on the esophagus and causing a stricture. Hopefully the PET will tell us....actually I am hoping it shows nothing and then we would have to assume it is the Barretts or the chemo. Personally I think it is the Barretts.
    Barretts is just treated with medication....controls the acid.
    Take care,
    Jane

    This comment has been removed by the Moderator
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #10
    unknown said:

    This comment has been removed by the Moderator

    great to hear
    Sherri,
    That is great to hear. Charlie has been swallowing a little better the last couple of days. (Didn't need to put his dinner in a blender last night!) His endoscopy and stretch were last Wed....I was hoping it would get a little better.
    I don't think we would have opted for the stent....at least not at this point.
    Jane

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