Back home....tired and still NED

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
in Ovarian Cancer #1
My CT scan was termed "good" by Dr S and the radiologist, although I have some "ground glass" in one lung that they think is the result of being intubated during my hernia surgery and a "small" amount of ascites, which they also attribute to the surgery. My CA125 had gone down a point (to 18), so I am still on the vaccine clinical trial train.

We've lost 5 so far, from the study group, due to recurrence.

I go back in January. Not looking forward to that - ice and cold wind and all that white stuff....yuk!

My daughter went with me this trip and she is a lot more adventurous than my husband. We stook in line at TKTS and got half price tickets to see Brooke Shields in The Addams Family. Great show, and my first Broadway show ever!

Carlene
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Comments

  • carolyn45
    carolyn45 Member Posts: 100
    #2
    Hooray!
    Marvelous news, Carlene. You're holding strong in NED, and that's what counts. Can your daughter go with you again? I'll bet she loves being able to support you this way.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #3
    carolyn45 said:

    Hooray!
    Marvelous news, Carlene. You're holding strong in NED, and that's what counts. Can your daughter go with you again? I'll bet she loves being able to support you this way.

    Actually, I think she loves
    Actually, I think she loves free trips...LOL!

    I'm a little worried about the ascites. Dr. S thinks if it were related to a recurrence, my CA125 would not have dropped. Who knows?

    Carlene
  • pattysoo
    pattysoo Member Posts: 170
    #4
    Dropped from study?
    Just curious....how many were originally enrolled in the vaccine study? Congrats on the good scan. It's always a joyous time to get good news.
  • jbeans888
    jbeans888 Member Posts: 313
    #5
    This is great news! I am
    This is great news! I am very happy for you I know it is a sigh of relief for a little bit. At least you get to travel to NY. Being from NJ I love NY and know it very well. I am not sure what part you go to but there is a great artist I love, his name is Alex Grey and his studio is down town by Chelsea and his stuff is really great. Seeing it in person will blow you away. You should google his name and you can see his paintings. They are all oil based and are huge! He has this series called the Sacred Mirrors and it is a series of 19 paintings that are huge and they tell a story from pre-existance to the after life and they are just mind blowing. I really suggest you go see them if you ever get a chance. Congrats on being NED still. :-)
  • kikz
    kikz Member Posts: 1,345 Member
    #6
    jbeans888 said:

    This is great news! I am
    This is great news! I am very happy for you I know it is a sigh of relief for a little bit. At least you get to travel to NY. Being from NJ I love NY and know it very well. I am not sure what part you go to but there is a great artist I love, his name is Alex Grey and his studio is down town by Chelsea and his stuff is really great. Seeing it in person will blow you away. You should google his name and you can see his paintings. They are all oil based and are huge! He has this series called the Sacred Mirrors and it is a series of 19 paintings that are huge and they tell a story from pre-existance to the after life and they are just mind blowing. I really suggest you go see them if you ever get a chance. Congrats on being NED still. :-)

    Great news, Carlene.
    I am so happy for you. I love good news.

    Karen
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #7
    kikz said:

    Great news, Carlene.
    I am so happy for you. I love good news.

    Karen

    NED is NED: don't let anything spoil that magic!
    I'm so glad you are still NED, Carlene. You have battled so ceaselessly to hang onto your remission and you truly deserve it. Glad you had fun!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    jbeans888 said:

    This is great news! I am
    This is great news! I am very happy for you I know it is a sigh of relief for a little bit. At least you get to travel to NY. Being from NJ I love NY and know it very well. I am not sure what part you go to but there is a great artist I love, his name is Alex Grey and his studio is down town by Chelsea and his stuff is really great. Seeing it in person will blow you away. You should google his name and you can see his paintings. They are all oil based and are huge! He has this series called the Sacred Mirrors and it is a series of 19 paintings that are huge and they tell a story from pre-existance to the after life and they are just mind blowing. I really suggest you go see them if you ever get a chance. Congrats on being NED still. :-)

    JB....the study is out of
    JB....the study is out of Memorial Sloan-Kettering in midtown Manhattan.

    I would love to see the paintings. Maybe next time I can find his gallery. Everytime we go, I get a little braver. LOL

    Carlene
  • carolenk
    carolenk Member Posts: 907 Member
    #9
    Hissy_Fitz said:

    JB....the study is out of
    JB....the study is out of Memorial Sloan-Kettering in midtown Manhattan.

    I would love to see the paintings. Maybe next time I can find his gallery. Everytime we go, I get a little braver. LOL

    Carlene

    Pelvic fluid
    Who used the word "ascites"? You or the doctor? There's always some fluid in the abdomen/pelvis. If your weight stays stable & you don't have bladder symptoms or bloating, you could relax...well, maybe worry less?
  • Barneygirl
    Barneygirl Member Posts: 90
    #10
    Wonderful Carlene. NED is
    Wonderful Carlene. NED is always great news!

    Laura
  • mopar
    mopar Member Posts: 1,972 Member
    #11
    THIS IS GREAT NEWS!
    Super news, Carlene! Enjoy it!

    (((HUGS)))
    Monika
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #12
    carolenk said:

    Pelvic fluid
    Who used the word "ascites"? You or the doctor? There's always some fluid in the abdomen/pelvis. If your weight stays stable & you don't have bladder symptoms or bloating, you could relax...well, maybe worry less?

    The radiologist's
    The radiologist's notes/report says "small amount of ascites."

    I am still working on losing the weight I gained during chemo, so that's not an indication of anything. I have lost 8-10 pounds in the last 3 months.

    Bladder symptoms in old ladies are just a part of life. I have a bladder the size of a peanut, to begin with, and I have carried four very large babies.

    Me? Worry less? You have to be joking.

    My daughter told Dr. S's PA that she thought I was depressed. Sandy asked me, "How long have you been depressed?" and I said, "Oh, about two years."
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #13
    pattysoo said:

    Dropped from study?
    Just curious....how many were originally enrolled in the vaccine study? Congrats on the good scan. It's always a joyous time to get good news.

    Patty....it's a small study
    Patty....it's a small study group, but I don't know how many have been recruited. I was the second or third.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #14
    NED!
    I love the sound of that word, Carlene! Glad you also gots some great mom-daughter time in NY.
    You have been a true fighter, and trail blazer.
    Hugs,
    kathleen
  • clamryn
    clamryn Member Posts: 508
    #15
    Wonderful
    That is so wonderful. NED, NED, NED... Keep it up. I am lovin' it.

    ((((hugs))))
    Linda
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #16
    That's great news
    Carlene. It sounds really good. I am so happy for you. I'm glad you were able to enjoy the trip and work in some fun things!!!
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #17
    Cindy Bear said:

    That's great news
    Carlene. It sounds really good. I am so happy for you. I'm glad you were able to enjoy the trip and work in some fun things!!!

    New York
    trips continue to bring you good news...ned..Take it and run. Enjoy feeling great and holiday time is coming. I have started shopping early.I want to deorate like nobody's business and bake and cookand be with family. Last 2 holiday's I couldn't. I am happy you saw a show and explored the city. Rest up now..busy days ahead..val
  • carolenk
    carolenk Member Posts: 907 Member
    #18
    Hissy_Fitz said:

    The radiologist's
    The radiologist's notes/report says "small amount of ascites."

    I am still working on losing the weight I gained during chemo, so that's not an indication of anything. I have lost 8-10 pounds in the last 3 months.

    Bladder symptoms in old ladies are just a part of life. I have a bladder the size of a peanut, to begin with, and I have carried four very large babies.

    Me? Worry less? You have to be joking.

    My daughter told Dr. S's PA that she thought I was depressed. Sandy asked me, "How long have you been depressed?" and I said, "Oh, about two years."

    I just wonder if you hadn't
    I just wonder if you hadn't had the history of OVCA attached to your chart, might the radiologist have used the words "small amount of pelvic fluid"?

    Here's another thing to think about: lymphedema. After the a debulking surgery, the lymph vessels are disrupted to the point where they will never be able to drain the pelvic fluid like they once did.

    Congratulations on dropping weight. I remember your post where you shared your height with us & I think of you like a Bantam chicken now--small but feisty. On a small frame, every pound really makes a big difference so good for you, Carlene!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #19
    carolenk said:

    I just wonder if you hadn't
    I just wonder if you hadn't had the history of OVCA attached to your chart, might the radiologist have used the words "small amount of pelvic fluid"?

    Here's another thing to think about: lymphedema. After the a debulking surgery, the lymph vessels are disrupted to the point where they will never be able to drain the pelvic fluid like they once did.

    Congratulations on dropping weight. I remember your post where you shared your height with us & I think of you like a Bantam chicken now--small but feisty. On a small frame, every pound really makes a big difference so good for you, Carlene!

    When I was diagnosed, I was
    When I was diagnosed, I was trying to lose weight - one reason I didn't think the whole "feeling full" symptom was a bad thing. I thought it was my amazing will power. Ha!

    After surgery, and almost 3 weeks on TPN, I dropped about 35 pounds. Even after I was released from the hospital, I had trouble eating and my weight continued to drop. I could not believe that for the first time in my life, I wanted to leave my jacket and shoes on for the weigh-ins at the doctor's office!

    Then came chemo, and steroids. I gained a ton of weight. After I decided I wasn't going to die in the next six months, I started working on taking it off. That was a lot harder than putting it on had been. Imagine that.

    My closet is stuffed with clothes that are either too big or too small. I retrieved a bin of winter stuff from the attic a couple of weeks ago, so at least I won't be naked. And I bought a pair of jeans. One pair. I don't want to get too comfortable in a size 10. Most of my clothes - and all my cute clothes - are a 6, and I'd really like to wear them again.

    I am not short. I am fun-size.

    Carlene
  • Unknown
    Unknown
    #20
    poopergirl14052 said:

    New York
    trips continue to bring you good news...ned..Take it and run. Enjoy feeling great and holiday time is coming. I have started shopping early.I want to deorate like nobody's business and bake and cookand be with family. Last 2 holiday's I couldn't. I am happy you saw a show and explored the city. Rest up now..busy days ahead..val

    This comment has been removed by the Moderator
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #21
    Hissy_Fitz said:

    When I was diagnosed, I was
    When I was diagnosed, I was trying to lose weight - one reason I didn't think the whole "feeling full" symptom was a bad thing. I thought it was my amazing will power. Ha!

    After surgery, and almost 3 weeks on TPN, I dropped about 35 pounds. Even after I was released from the hospital, I had trouble eating and my weight continued to drop. I could not believe that for the first time in my life, I wanted to leave my jacket and shoes on for the weigh-ins at the doctor's office!

    Then came chemo, and steroids. I gained a ton of weight. After I decided I wasn't going to die in the next six months, I started working on taking it off. That was a lot harder than putting it on had been. Imagine that.

    My closet is stuffed with clothes that are either too big or too small. I retrieved a bin of winter stuff from the attic a couple of weeks ago, so at least I won't be naked. And I bought a pair of jeans. One pair. I don't want to get too comfortable in a size 10. Most of my clothes - and all my cute clothes - are a 6, and I'd really like to wear them again.

    I am not short. I am fun-size.

    Carlene

    WTG on NED
    I am so glad to hear you are still ned how long have you been in remission. This is all new to me so when I found out that I was in remission I now find myself worring about the cancer comeing back. I am still in my first line of treatment and I am worried about it comeing back what is wrong with me I should be injoying being cancer free but I just can't do it. I think part is because it came so fast that it is hard to believe I will stay that way. Is this your first remission? I will be praying for you that you stay in NEDS and that you will lose the weight.

    Anne

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