NED unexpectedly !!!!!

Today, I saw my dr. for post chemo consultation. When he walked in and asked me how I was doing, I said "the rapture did not take place as predicted last Saturday, but I feel like I am facing my judgment day today". He said, well, your CT/PET scan is completely clean!

I did not expect this. I went in there bracing myself for a discussion regarding further treatment options. My diagnosis was the most advanced kind (UPSC 4B), and my surgery outcome was sub optimal in that a 5.3x3.6 cm tumor was deemed inoperable and left behind among other sub 1 cm smaller cancer nodules. This tumor did not shrink on the scan I took at a half way point during chemo. Furthermore, my cancer, at the time of diagnosis was extensively metastatic: spread all over the abdominal & pelvic area.

Given all this, I knew odds were not in my favor that I would go into remission after a standard 6 cycles (18 weeks) of front line chemo therapy.

So, this combined with the fact that I breezed through 18 weekly chemo infusion sessions without any side effects (other than the neutrophilis tanking and hair falling out) tells me that I am already beating the odds big time.

I know the odds for recurrence within a few years are near 100% for my diagnosis, but I hope I can beat these too - or at least stay in long remission at a time.

I told my doc "you never looked so handsome as you do today!", and he had a big laugh (this guy never smiles or laughs, so this is a major accomplishment on my part!) - in reality, he actually looks like a grumpy frog. But, he is a very competent doctor.

Meanwhile, I checked the results of my blood work done last week. It looks like my bone marrow is recovering nicely also: 2 and half weeks after the last chemo infusion, my neutrophilis is back to normal (low end of the normal though - I hope it continues to go up a bit more).

Next step: I will contact a couple of places where they are conducting vaccine trial for women who recently went into remission.

By the way, I don't know what allowed me to beat the odds up to this point. However, here are few things I did. Whether they helped in achieving remission or not is impossible to tell (it's not a controlled experiment after all), but I do believe it kept my body healthy, so to the degree that it strengthened my body over all, it probably helped to a certain extent.

*** diet: I became rather fanatic about good nutrition. No meat. Fish occasionally. Organic egg whites for protein. 12 servings of fruits and vegetables all known for their cancer fighting attributes. No diary product. No animal fat. No bleached white floor or white rice. Black rice every day. Flax seed oil, fish oil, curcumin daily. Lot's of garlic and ginger. Minimal sugar (maybe a table spoon of ice cream a day).

*** exercise: on the average daily 75 minutes of aerobics

*** psychology: right from the beginning, I almost instinctively went into the mode of opening up my social circle. Started to write essays about my "journey" and shared with close friends and relatives. This has been enormously therapeutic for me. I was very optimistic about my odds from the beginning in spite of grim published statistics. I felt that I could turn cancer into a net positive experience for me, and it turned out to be exactly that. All in all, I gained more than I lost.

So, time will tell how I will be doing going forward, but I intend to keep up all I have done so far as described above. Who knows, I may recurr in a short while. Well, if it happens, I will deal with it with the same resolve and positive outlook I had when I first got DX'ed with the worst possible diagnosis I could imagine.
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Comments

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Congratulations on being NED
    You have always had such a positive attitude, and have done so many positive changes in your life with diet, exercise and journaling. What a great job you have done, and have gotten fantastic results. May you continue your journey with such wonderful results. I am proud of your accomplishments. In peace and caring.
  • nempark
    nempark Member Posts: 681
    Congrats!!!!!!!
    Well written: Remarkable results and a wonderful attitude. Let's put aside the word "recurrence" for a long time or forever. Your sis June.
  • HellieC
    HellieC Member Posts: 524 Member
    Amazing outcome
    I am so pleased for you. What an amazing outcome. As you said, the odds were not on your side at the start, but you have beaten them into the ground. Long may you dance with NED - you must be feeling wonderful.
    Kindest thoughts
    Helen
  • norma2
    norma2 Member Posts: 479
    {{{Happy Dance}}}
    I am so glad to read this post. Happy for you!!!
  • Susanna23
    Susanna23 Member Posts: 66 Member
    norma2 said:

    {{{Happy Dance}}}
    I am so glad to read this post. Happy for you!!!

    Congratulations
    Great post - so inspiring! Many many congratulations and thanks so much for sharing your practical tips. I am sure they made a huge contribution to your recovery.
    Very best wishes
    Susan
  • kkstef
    kkstef Member Posts: 688 Member
    Wonderful news!
    Congratulations on your excellent report! You have played a very active role in being NED and you should be very pleased with your efforts....diet, exercise, openness and a VERY opimistic attitude!

    May you remain healthy and happy!

    Karen
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    kkstef said:

    Wonderful news!
    Congratulations on your excellent report! You have played a very active role in being NED and you should be very pleased with your efforts....diet, exercise, openness and a VERY opimistic attitude!

    May you remain healthy and happy!

    Karen

    That's the kind of news we all love!!!
    So happy for you!! Turn your face to the sun and rain and wind and allow yourself to feel the bliss of renewed hope and joy!
  • evertheoptimist
    evertheoptimist Member Posts: 140
    I think there was an element
    I think there was an element of luck also. My cancer turned out to be sensitive to taxol/carbo. It could have easily been a pretty scary scenario if mine was not responding well to this combo.

    So, I cannot take all the credit for getting this result.

    That said, I believed, from early on, even before I got my scan results today, that this cancer, contrary to the popular belief, can be beaten without relying on miraculous healing or divine intervention. There are certain things that are under our control, and I plan to do everything within my power to up my odds.

    Who knows, even with all this my time may come soon, but at least, I will know that I did everything I could. that will be a gift for my husband and children, that is I did not give up "on them" - it's a reverse thing to say.... I am not afraid of "my death", but I know the devastation it will wreck on them, especially my husband. So, I intend to do everything I can so that my family will not be burdened by my untimely death that I did not do my best to prevent.
  • upsofloating
    upsofloating Member Posts: 466 Member

    I think there was an element
    I think there was an element of luck also. My cancer turned out to be sensitive to taxol/carbo. It could have easily been a pretty scary scenario if mine was not responding well to this combo.

    So, I cannot take all the credit for getting this result.

    That said, I believed, from early on, even before I got my scan results today, that this cancer, contrary to the popular belief, can be beaten without relying on miraculous healing or divine intervention. There are certain things that are under our control, and I plan to do everything within my power to up my odds.

    Who knows, even with all this my time may come soon, but at least, I will know that I did everything I could. that will be a gift for my husband and children, that is I did not give up "on them" - it's a reverse thing to say.... I am not afraid of "my death", but I know the devastation it will wreck on them, especially my husband. So, I intend to do everything I can so that my family will not be burdened by my untimely death that I did not do my best to prevent.

    Fantastic news!!! You gave
    Fantastic news!!! You gave it your all and it worked - enjoy, enjoy the results.

    Do I recall correctly that in addition to dose dense taxol and 3-wkly carbo, you also were on Avastin?

    Thanks also for relating your own diet, exercise, and mental health treatment techniques. I do believe the multifocal approach is key to the success of our treatments. Not sure which area is of greatest importance but covering all bases is best route.

    Again, congrats and may your NED state live long and prosper.
  • evertheoptimist
    evertheoptimist Member Posts: 140

    Fantastic news!!! You gave
    Fantastic news!!! You gave it your all and it worked - enjoy, enjoy the results.

    Do I recall correctly that in addition to dose dense taxol and 3-wkly carbo, you also were on Avastin?

    Thanks also for relating your own diet, exercise, and mental health treatment techniques. I do believe the multifocal approach is key to the success of our treatments. Not sure which area is of greatest importance but covering all bases is best route.

    Again, congrats and may your NED state live long and prosper.

    yes, I was on Avastin from
    yes, I was on Avastin from cycle 2 through cycle 5 (they did not give me Avastin on my last cycle: I developed sinus infection and bloody nose due to a prolonged cold, and that was no no for Avastin)

    I am a SciFi junkie! May you live long and prosper also!
  • daisy366
    daisy366 Member Posts: 1,458 Member

    yes, I was on Avastin from
    yes, I was on Avastin from cycle 2 through cycle 5 (they did not give me Avastin on my last cycle: I developed sinus infection and bloody nose due to a prolonged cold, and that was no no for Avastin)

    I am a SciFi junkie! May you live long and prosper also!

    Wonderful. May the force
    Wonderful. May the force continue with you! Mary Ann
  • jazzy1
    jazzy1 Member Posts: 1,379
    daisy366 said:

    Wonderful. May the force
    Wonderful. May the force continue with you! Mary Ann

    Wonderful News~
    You are a true fighter and knew that from day one when you told us you would fight. Well...it has paid off with NED...yeah!

    I'm a firm believer in keeping our body and mind strong to keep the cancer at bay.

    Keep up the great work and time will fly by with all good tests....

    Enjoy life it's truly a blessing....
    Jan
  • Fayard
    Fayard Member Posts: 438 Member
    I am so happy for you!

    I am so happy for you!
  • evertheoptimist
    evertheoptimist Member Posts: 140
    thanks everybody. I
    thanks everybody. I appreciate your words of encouragement.

    Given where I started (pretty grim diagnosis and prognosis with a sub optimal surgery outcome), this tells me that our starting point does not necessarily mean our destiny. We all have our own journey to live. This is a work in progress.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    thanks everybody. I
    thanks everybody. I appreciate your words of encouragement.

    Given where I started (pretty grim diagnosis and prognosis with a sub optimal surgery outcome), this tells me that our starting point does not necessarily mean our destiny. We all have our own journey to live. This is a work in progress.

    Wow
    I remember well your original posts and your optimistic outlook. I'm so happy for you. Keep up the good work! Did you oncologist seem surprised?

    Suzanne
  • evertheoptimist
    evertheoptimist Member Posts: 140

    Wow
    I remember well your original posts and your optimistic outlook. I'm so happy for you. Keep up the good work! Did you oncologist seem surprised?

    Suzanne

    my oncologist is rather a
    my oncologist is rather a taciturn, scary looking dude with poker face and not much of emotion showing, but I could sense that he was happy to be giving good news.

    Whether he was surprised or not is hard to tell. One data point is, when I showed concern during the mid chemo consultation over the fact that the big tumor did not shrink, he said something to the effect that "you have no idea how well you are doing considering where you started..." He never showed his alarm over my diagnosis or initial condition before, and that was the only time he ever let on how serious he thought my condition was. So, it is probable that I did much better than he could comfortably project at the beginning.
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Celebrating!
    Joy Joy Joy! I am soooo happy for you! Thanks for sharing this very uplifting news!

    Kathy
  • california_artist
    california_artist Member Posts: 816 Member
    You know, as i read your post, I just kept on nodding my head in
    agreement. Me too! I always felt just from your screen name alone that you had a good shot at things. I think one of the biggest things that saved me, was I just kept on thinking I don't think so in regard to letting this cancer get me. And then when I joined the group and found that I could help people, or at least try to, that just perked me up even more. It's been three years and four months since my UPSC diagnosis, and I am still kicking.

    Not nearly as adamant as in the beginning of doing all the things you continue to do, but every day I get in some very good for me things.

    Those two lymph nodes that in the beginning grew, stopped once I began finding out what cancer needed and then quit doing those things.

    C'est la vie!!!!!

    Kudos to you!!!!!

    Lots of warm squishy hugs and thoughts
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Wonderful NED!!!!
    Just read your posting and I am so very happy for you!!!! When I read about your pokerface doctor I got a chuckle. I am so very very happy for you!!!! (((HUGS)))
    Lori
  • california_artist
    california_artist Member Posts: 816 Member

    my oncologist is rather a
    my oncologist is rather a taciturn, scary looking dude with poker face and not much of emotion showing, but I could sense that he was happy to be giving good news.

    Whether he was surprised or not is hard to tell. One data point is, when I showed concern during the mid chemo consultation over the fact that the big tumor did not shrink, he said something to the effect that "you have no idea how well you are doing considering where you started..." He never showed his alarm over my diagnosis or initial condition before, and that was the only time he ever let on how serious he thought my condition was. So, it is probable that I did much better than he could comfortably project at the beginning.

    About the tumor not shrinking
    It is my understanding that often they won't shrink, but there becomes a dead center surrounded by live cells, so even though the tumore appears to be the same, it's deadliness is greatly lessened.Ah? does that make sense?