Glass Half Full -Good CT Scan

Callaloo
Callaloo Member Posts: 135
in Esophageal Cancer #1
10 months ago, when my first post-chemoradiation CT scan showed that my primary tumor was gone and that there was "no evidence of disease", I had the audacity to think to myself that even though I was stage IV, I was cured. Well, I know better now, having gone through the shock and horror of recurrence. But with another similar good CT scan result last week ("no obvious recurrent or metastatic disease"), I am celebrating nonetheless.

It appears the Xeloda is working for now. I've been on it since April 1. I've been warned that the cancer will eventually develop resistance, but we are continuing the therapy. Side effects are minimal, though a bit more noticeable now, and still not enough to interfere with normal daily activities. Dry hands and feet, some abdominal pain, occasional slight nausea. Nothing that can't be alleviated with Atavan, pain meds and lotion.

Overall, life is good, and I've just booked another beach vacation and looking to the future.

I'm still coming to grips with the concept that my disease is incurable, but I now understand that it doesn't necessarily mean "terminal". I am comfortable with the decision I made to go with the low-key treatment rather than go after the cancer again with the big guns, knowing that neither will effect a cure. (I'm talking about recurrence only --- my initial treatment I went with the biggest guns they would give me -- it nearly killed me, but I don't regret it; I believe it knocked the cancer out to a point where it is now manageable.)

I know every stage IV case is different, but if the chemo is debilitating and you are offered a chance to tone it down, I wouldn't reject the recommendation out of fear that it's tantamount to giving up. I know that's what I thought at first. I feel a little differently now.

There seem to be quite a few newly diagnosed stage IVs who have just started posting. You have a tough road ahead, but don't give up hope.

Lu in Oregon
Stage IVb (I've updated my profile with treatment details)

Comments

  • Daisylin
    Daisylin Member Posts: 365
    #2
    FULL glass!
    Sounds like a full glass to me! Seems the motto here should be "one day at a time, one test at a time" I am very happy for your results, both for you and for more personal reasons.

    We are getting my husbands first CT scan results today after 4 rounds of chemo..... (stage IVB, mets to liver) I'm terrified for the results, and your post provided me with some hope and belief in a possible 'good news' result. My glass feels half empty right now. Since reading all the posts here, I am losing hope and becoming more frightened by the day. It's nice to read something positive, especially today!

    I wish you many more great test results, and a long fulfilling life!
    Chantal
  • sangora
    sangora Member Posts: 213
    #3
    Daisylin said:

    FULL glass!
    Sounds like a full glass to me! Seems the motto here should be "one day at a time, one test at a time" I am very happy for your results, both for you and for more personal reasons.

    We are getting my husbands first CT scan results today after 4 rounds of chemo..... (stage IVB, mets to liver) I'm terrified for the results, and your post provided me with some hope and belief in a possible 'good news' result. My glass feels half empty right now. Since reading all the posts here, I am losing hope and becoming more frightened by the day. It's nice to read something positive, especially today!

    I wish you many more great test results, and a long fulfilling life!
    Chantal

    Lu and Daisylin
    As Lu knows, I am also a stage 4 now 14 months out with no spread at this time. Like Lu, I went for the biggest guns the Univedrsity of Virginia could muster and it worked for me. Like Lu, I nearly died from the treatment at the time but have absolutely no regrets. When my doctor recommended my three drug cocktail and radiation at the same time I went mute but here I sit. Anyway, I have just returned from a three week trip and took my Xeloda with me and treated while traveling. This time I will be in the Everglades and Key West for two weeks and have decided along with my oncologist to take a three week break since I have been on the Xeloda cycle since January without a break. As Lu says everyone is different but on the 7 days on 7 days off Xeloda cycle I am having near no side effects. Some fatigue here and there and some tummy distress but no real neausa to speak of. I have a CT scan on the 13th of June and am hoping and praying that it will be clear and I can go on my trip feeling confident. If its not clear I am going on my trip anyway Xeloda and all. Chantal, please let your husband know that there can be light at the end of the tunnel and that though hard to get there, it is worth it in the end if only for a few months. Love Life and Live in it, Sam
  • sangora
    sangora Member Posts: 213
    #4
    Daisylin said:

    FULL glass!
    Sounds like a full glass to me! Seems the motto here should be "one day at a time, one test at a time" I am very happy for your results, both for you and for more personal reasons.

    We are getting my husbands first CT scan results today after 4 rounds of chemo..... (stage IVB, mets to liver) I'm terrified for the results, and your post provided me with some hope and belief in a possible 'good news' result. My glass feels half empty right now. Since reading all the posts here, I am losing hope and becoming more frightened by the day. It's nice to read something positive, especially today!

    I wish you many more great test results, and a long fulfilling life!
    Chantal

    Lu and Daisylin
    As Lu knows, I am also a stage 4 now 14 months out with no spread at this time. Like Lu, I went for the biggest guns the Univedrsity of Virginia could muster and it worked for me. Like Lu, I nearly died from the treatment at the time but have absolutely no regrets. When my doctor recommended my three drug cocktail and radiation at the same time I went mute but here I sit. Anyway, I have just returned from a three week trip and took my Xeloda with me and treated while traveling. This time I will be in the Everglades and Key West for two weeks and have decided along with my oncologist to take a three week break since I have been on the Xeloda cycle since January without a break. As Lu says everyone is different but on the 7 days on 7 days off Xeloda cycle I am having near no side effects. Some fatigue here and there and some tummy distress but no real neausa to speak of. I have a CT scan on the 13th of June and am hoping and praying that it will be clear and I can go on my trip feeling confident. If its not clear I am going on my trip anyway Xeloda and all. Chantal, please let your husband know that there can be light at the end of the tunnel and that though hard to get there, it is worth it in the end if only for a few months. Love Life and Live in it, Sam
  • Donna70
    Donna70 Member Posts: 852 Member
    #5
    sangora said:

    Lu and Daisylin
    As Lu knows, I am also a stage 4 now 14 months out with no spread at this time. Like Lu, I went for the biggest guns the Univedrsity of Virginia could muster and it worked for me. Like Lu, I nearly died from the treatment at the time but have absolutely no regrets. When my doctor recommended my three drug cocktail and radiation at the same time I went mute but here I sit. Anyway, I have just returned from a three week trip and took my Xeloda with me and treated while traveling. This time I will be in the Everglades and Key West for two weeks and have decided along with my oncologist to take a three week break since I have been on the Xeloda cycle since January without a break. As Lu says everyone is different but on the 7 days on 7 days off Xeloda cycle I am having near no side effects. Some fatigue here and there and some tummy distress but no real neausa to speak of. I have a CT scan on the 13th of June and am hoping and praying that it will be clear and I can go on my trip feeling confident. If its not clear I am going on my trip anyway Xeloda and all. Chantal, please let your husband know that there can be light at the end of the tunnel and that though hard to get there, it is worth it in the end if only for a few months. Love Life and Live in it, Sam

    all good news
    So great to hear these good results. This means so much to us even those who are stage II and III and are post surgery because it may be in the cards that we will have a recurrence and to find out some of the meds work to hold it back at least for awhile thrills us and to boot we are so happy for all of you. I know a lot has been said about fighting too long and that is true when it gets to no quality of life, but I am hoping this won't make others give up hope too soon when if they find out they are now stage IV, that there are still options out there for them. Thanks to all of you for giving us these rays of hope. May God watch over you and give you many more great moments in the future. take care,
    Donna70
  • ArchTB
    ArchTB Member Posts: 150
    #6
    Excellent news!
    So happy to read about your CT scan results! Wishing you many more of such reports in the future. Enjoy your vacation
    Olya
  • mrsbotch
    mrsbotch Member Posts: 349
    #7
    I am thrilled for you
    Dear Lu


    Reading your post was the best news I have heard in a long time. You are a miracle child and I love it. Go for the vacations and ALL life has to offer. You are truly blessed and I for one am just so happy.

    You are one of my favorites on this site, I should not say that I guess, but you are. You have been to hell and now back and you deserve evry good thing that comes your way.

    Love you lots

    barb
  • linda1120
    linda1120 Member Posts: 389
    #8
    GREAT NEWS!
    Congratulations! Go and have a wonderful vacation.

    Linda
  • preacherchad
    preacherchad Member Posts: 60
    #9
    That is great news!!! Keep
    That is great news!!! Keep moving forward
  • GerryS
    GerryS Member Posts: 227 Member
    #10
    Great news.......
    Great positive comments, your attitude will carry you through this. Keep up the good work and wishing you many good days ahead.

    Gerry
  • hopper52
    hopper52 Member Posts: 108
    #11
    The Asian Connection?
    Lu

    Here, here for the good results. I remember in one of your posts you mentioned your Asian ancestry. You must have got mad at that cancer. My wife is Korean and had colon cancer in 2008. She has beat that so far. Now that I have EC her attitude is, "We killed one cancer....now we have to kill another."

    Or as they say in Korea......"FIGHTING!"

    Michael Daniels
    Brandon, Florida
  • ecourtney
    ecourtney Member Posts: 39
    #12
    hopper52 said:

    The Asian Connection?
    Lu

    Here, here for the good results. I remember in one of your posts you mentioned your Asian ancestry. You must have got mad at that cancer. My wife is Korean and had colon cancer in 2008. She has beat that so far. Now that I have EC her attitude is, "We killed one cancer....now we have to kill another."

    Or as they say in Korea......"FIGHTING!"

    Michael Daniels
    Brandon, Florida

    Great Strategy!
    Hi Lu,
    I recall you gave me some advice when I posted my question about the big guns and you called it right suggesting quality of life over further heavy treatment.The approach my brother Peter (stage 4b) appears to have taken by default was light chemo first, big cannons later, the opposite approach to you. At the light chemo stage, I recall a conversation he had with a female friend who had breast cancer and was wearing a wig and feeling pretty poorly. She knew Peter was also undergoing chemo and could not believe how well he looked. "Just what treatment are you on Peter???" she asked. Ironically Peter was flattered that the chemo did not knock seven bells out of him whereas our poor friend looked how you would expect. Later as the tumour took a grip we began to wonder if early treatment was aggressive enough and began to feel short changed. ((Different cancers of course but I met this friend the other day and she is still doing well). Anyway I digress - my point is I wonder is there a lesson here for us in how we approach treatment? Should it be big guns first then moderate later? It's just a thought but possibly worth considering for others on this journey.
    When Peter's journey started we took what was offered with blind faith..........
    Great to see your strategy is working for you- Long may you continue to call it right. Its very brave to decide to slow treatment down and goes against our natural fighting instinct but you know it's right for you. I hope we can all learn from your approach.. All the best Maurice
  • BMGky
    BMGky Member Posts: 621
    #13
    Donna70 said:

    all good news
    So great to hear these good results. This means so much to us even those who are stage II and III and are post surgery because it may be in the cards that we will have a recurrence and to find out some of the meds work to hold it back at least for awhile thrills us and to boot we are so happy for all of you. I know a lot has been said about fighting too long and that is true when it gets to no quality of life, but I am hoping this won't make others give up hope too soon when if they find out they are now stage IV, that there are still options out there for them. Thanks to all of you for giving us these rays of hope. May God watch over you and give you many more great moments in the future. take care,
    Donna70

    Well said
    Prayers for each of you and for all the members of this board. The honesty and caring of this discussion board and the desire to help expressed by all is helping each one in their individual struggles. Mary
  • Callaloo
    Callaloo Member Posts: 135
    #14
    ecourtney said:

    Great Strategy!
    Hi Lu,
    I recall you gave me some advice when I posted my question about the big guns and you called it right suggesting quality of life over further heavy treatment.The approach my brother Peter (stage 4b) appears to have taken by default was light chemo first, big cannons later, the opposite approach to you. At the light chemo stage, I recall a conversation he had with a female friend who had breast cancer and was wearing a wig and feeling pretty poorly. She knew Peter was also undergoing chemo and could not believe how well he looked. "Just what treatment are you on Peter???" she asked. Ironically Peter was flattered that the chemo did not knock seven bells out of him whereas our poor friend looked how you would expect. Later as the tumour took a grip we began to wonder if early treatment was aggressive enough and began to feel short changed. ((Different cancers of course but I met this friend the other day and she is still doing well). Anyway I digress - my point is I wonder is there a lesson here for us in how we approach treatment? Should it be big guns first then moderate later? It's just a thought but possibly worth considering for others on this journey.
    When Peter's journey started we took what was offered with blind faith..........
    Great to see your strategy is working for you- Long may you continue to call it right. Its very brave to decide to slow treatment down and goes against our natural fighting instinct but you know it's right for you. I hope we can all learn from your approach.. All the best Maurice

    Thank you for all your well wishes and good thoughts
    I appreciate all your good wishes.

    Some people think it's a crap shoot when we make these decisions on when to stop chemo based on so little information, but we do the best we can, and keep our fingers crossed. But I'm glad to be feeling "normal." I have an occasional bad day, and it's a reminder of how nasty chemo can be, that I'm glad I'm not doing that now, and hope I never have to go through that again.
    Lu

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