what was my lucky number this test, when i played cea roulette ?

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
edited March 2012 in Colorectal Cancer #1
and after 6 weeks of no conventional treatment and intense alternative therapy the number is

28

now thats an increase of 11 over 6 weeks. i am seeing the onc tonight.
my full bloods were exceptional, the best ever, so thats good news.
and my blood pressure is back to 120/69/59 which is good and back to normal after being elevated from the dmps chelation therapy i have started a few days ago.

i got the result from my functional gp while getting iv C, i asked him to come up with a more effective plan/strategy because what i am doing is not getting the result i want cea=0

i will see my lovelly onc this arvo and i know already its likely to be cea in another 6 weeks and then ct's again and or a pet. i did have some headaches last week, which is unusual for me. so maybe they will look to see if i have a brain. i'll see what onc says.

i was praying intensely for a zero, but am happy enough to be healthy, strong and positive. i did peak into the abyss and its along way down. our illness is a relentless disease. i am glad noone said surviving crc would be easy, because then i would be seriously frustrated. then i looked up to heaven, i said hello to lisa.

i popped into the kids school to given them a lunchtime hug on the way home, i did not tell them but i had a little tear. i am the only parent who seems to do this routinely. the perks of having cancer in a supportitive school community. one of the dad's is a food technologist he is making me a batch of bio absortable curcumin. i am going to turn my blood yellow with the stuff.

got to dash, supplements, lunch and an enema to do before i pickup the kids from school and we go into the city to see the onc and then have a dinner in kings cross. a very colourful part of sydney.

Other than this result, its a great day. It may have been worse if i had not tried the alternative therapies and we have discussed a range alternative strategies to serious with those troublesome cells. maybe the surgeon will have to cut them out, when they find them.

its like an itch you cannot scratch.

hugs,
pete

ps i am grateful for all the care and support i get here from all my doctors and friends local and online. see my blog for what i have tried and the results so far, if your interested.

Comments

  • toyfox
    toyfox Member Posts: 158 Member
    #2
    Not the news
    This was not the news my husband and I were hoping and
    praying for. Was nice to know all the other tests were
    good though. I am at a loss for words. Just know that we
    care and will continue to pray for you.
    My husband just said keep on fighting...which I know you
    will do.
    Hugs Linda
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    toyfox said:

    Not the news
    This was not the news my husband and I were hoping and
    praying for. Was nice to know all the other tests were
    good though. I am at a loss for words. Just know that we
    care and will continue to pray for you.
    My husband just said keep on fighting...which I know you
    will do.
    Hugs Linda

    thanks linda, i did alot of soul searching today.
    Dear Linda,

    Thank you for your prayers and kind thoughts. they mean alot to me.
    I saw the onc tonight, got home and put the blog below together and scanned my results into google docs. Feel free to have a peak at the blog, i would be interested in some feedback.

    I am trying to lower the barriers to my clincial info so those caring for me and providing suggestions can do so easily. Has anyone else tried this before.

    I want to update/review my strategy at each check point of the treatment cycle.

    hugs,
    pete

    PS This link shows what my team of doctors get to review over the net locally and internationally.

    http://petertrayhurn.blogspot.com.au/2012/03/medical-cea-28-11-point-increase-over-6.html#!http://petertrayhurn.blogspot.com/2012/03/medical-cea-28-11-point-increase-over-6.html
  • Minnesotagirl
    Minnesotagirl Member Posts: 141
    #4
    Your story continues
    Pete,

    I am sorry to hear that your CEA is rising. I hope that someone (anyone) can get to the bottom of the increased number.

    What I find so fascinating about your story Pete is that you are such a pioneer ~ such an advocate for finding a cure ~ not only for yourself but for all of us. I just went on your medical record site and was reviewing some of your results. Thank you for sharing and putting all that work in for all parties to read, follow, share and learn.

    What I most admire about you Pete is that I believe you will make a difference in the fight ~ if not for all of us but maybe for our children who may be faced with this same diagnosis as we have one day ~ I certainly hope not, but reality is reality. Keep up the good fight Pete and make headlines for all of us. Minnesota hugs to you and yours and keep your chin up...I think you will give cancer a fight like no other~

    "Minnie"
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    Minnesotagirl said:

    Your story continues
    Pete,

    I am sorry to hear that your CEA is rising. I hope that someone (anyone) can get to the bottom of the increased number.

    What I find so fascinating about your story Pete is that you are such a pioneer ~ such an advocate for finding a cure ~ not only for yourself but for all of us. I just went on your medical record site and was reviewing some of your results. Thank you for sharing and putting all that work in for all parties to read, follow, share and learn.

    What I most admire about you Pete is that I believe you will make a difference in the fight ~ if not for all of us but maybe for our children who may be faced with this same diagnosis as we have one day ~ I certainly hope not, but reality is reality. Keep up the good fight Pete and make headlines for all of us. Minnesota hugs to you and yours and keep your chin up...I think you will give cancer a fight like no other~

    "Minnie"

    I feel so sorry for the news,
    I'm praying for positive news very soon.
    Take care my friend!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #6
    pepebcn said:

    I feel so sorry for the news,
    I'm praying for positive news very soon.
    Take care my friend!

    thanks pepe
    Dear pepe,

    i think we need to go for a walk.

    in my imagination i will be walking through antartica. thats where i really want to take the kids and ellie and to go diving with seals.

    good news / bad news. screww it, we are alive and today is a damm fine day from where i am sitting. i read my daughters religion book this morning, we have to sign it, i wrote a really detailed note. She is an inspirition, and i needed a little help to get out bed this morning and that did it.

    its not over to the fat lady sings. i am not fat now, and i am a guy with lots to try!

    how are you going ?

    i have a very dear friend here stace with some nasty liver tumours, she is real ill and has all the time in the world ( whatever that means ), now i know what our liver does in way to much detail, the idea of liver mets is scary.

    hugs,
    pete


    ps i am still grateful for my health despite a few troublesome cells, i am healthier today than most i see around me, and we can only live well one day at a time.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #7
    Minnesotagirl said:

    Your story continues
    Pete,

    I am sorry to hear that your CEA is rising. I hope that someone (anyone) can get to the bottom of the increased number.

    What I find so fascinating about your story Pete is that you are such a pioneer ~ such an advocate for finding a cure ~ not only for yourself but for all of us. I just went on your medical record site and was reviewing some of your results. Thank you for sharing and putting all that work in for all parties to read, follow, share and learn.

    What I most admire about you Pete is that I believe you will make a difference in the fight ~ if not for all of us but maybe for our children who may be faced with this same diagnosis as we have one day ~ I certainly hope not, but reality is reality. Keep up the good fight Pete and make headlines for all of us. Minnesota hugs to you and yours and keep your chin up...I think you will give cancer a fight like no other~

    "Minnie"

    minnie i needed your kind words this morning in particular
    dear minnie,

    i have not left alot of emotional petrol in the tank, my regime is very very demanding and not getting the results i pray for.

    we all keep on doing what we feel best each day, that is whats nice about life.

    i am seeing the best cancer functional doctor in australia this morning, he offered me a job, i said first lets fix me. i will see what he says as we pump in some orange juice.

    the genostics reports for $4600 are alot, but at i have them, tried them, the recommendations have not yield results commesurate with the expense, but they were a starting point, that i built my regime on back recurrance day one.

    hugs,
    pete
  • janie1
    janie1 Member Posts: 753 Member
    #8
    pete43lost_at_sea said:

    minnie i needed your kind words this morning in particular
    dear minnie,

    i have not left alot of emotional petrol in the tank, my regime is very very demanding and not getting the results i pray for.

    we all keep on doing what we feel best each day, that is whats nice about life.

    i am seeing the best cancer functional doctor in australia this morning, he offered me a job, i said first lets fix me. i will see what he says as we pump in some orange juice.

    the genostics reports for $4600 are alot, but at i have them, tried them, the recommendations have not yield results commesurate with the expense, but they were a starting point, that i built my regime on back recurrance day one.

    hugs,
    pete

    Pete, if you need any
    Pete, if you need any fixing, you'll get fixed. You've accomplished so much in the past 5 months. It has NOT all been for nothing. We all think about this crap all of the time. I hate the time it robs me in just thinking about it. Keep fighting, but enjoy those wonderful kids and wife like you are doing.
    And yes, thank you for posting your records. I haven't looked at them yet but I will. You keep me on my toes every day.
    The conference in ATL, what type of doctors were there?
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #9
    I'm sure you will walk in antartica with the kids very soon,
    but not with me . I rather prefer somewhere warmer! Hehehehehe.
    What about Africa my friend ?.
    Get fun mate!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #10
    pepebcn said:

    I'm sure you will walk in antartica with the kids very soon,
    but not with me . I rather prefer somewhere warmer! Hehehehehe.
    What about Africa my friend ?.
    Get fun mate!

    fun sounds great. africa lets do it!
    i saw integraive doctor 2 today with his very sexy sidekick who is an awesome doctor as well. she slaps me around and does not pull her punches, i need to be kept inline.

    well i have PAUSED the heavy duty chelation until my gut dysbios is fixed. i am doing some pretty advance day stool tests and a comprehensive food intollerances test. i am also stopping my progurt, there goes the last bit of dairy. i only added it back 4 weeks ago anyway.

    i am still positive about a super healthy diet and supplements and exercise but can state they have not stopped my crc at this point. they may have slowed it down, they may have reduced the number of mets. time and testing will tell.

    my kitchen looks like a doctors office.

    i will know more after the CT scan next week which includes the brain. doing all the nutritional and functional tests still means i am cleaning up my biology as fast as i can. now i wish i had gotten onto this stuff the day i finished surgery and not left it until the

    hugs,
    pete

    ps i am smiling now pepe! thanks as i go off to sleep and dream of africa and lions and tigers. i might get a fantastic photo in my dreams.
  • tommycat
    tommycat Member Posts: 790 Member
    #11
    pete43lost_at_sea said:

    fun sounds great. africa lets do it!
    i saw integraive doctor 2 today with his very sexy sidekick who is an awesome doctor as well. she slaps me around and does not pull her punches, i need to be kept inline.

    well i have PAUSED the heavy duty chelation until my gut dysbios is fixed. i am doing some pretty advance day stool tests and a comprehensive food intollerances test. i am also stopping my progurt, there goes the last bit of dairy. i only added it back 4 weeks ago anyway.

    i am still positive about a super healthy diet and supplements and exercise but can state they have not stopped my crc at this point. they may have slowed it down, they may have reduced the number of mets. time and testing will tell.

    my kitchen looks like a doctors office.

    i will know more after the CT scan next week which includes the brain. doing all the nutritional and functional tests still means i am cleaning up my biology as fast as i can. now i wish i had gotten onto this stuff the day i finished surgery and not left it until the

    hugs,
    pete

    ps i am smiling now pepe! thanks as i go off to sleep and dream of africa and lions and tigers. i might get a fantastic photo in my dreams.

    Hi Pete,
    The CEA numbers are
    Hi Pete,
    The CEA numbers are concerning, but as you know, only a PET or CT will let you know if you're back in the battle. If so, you have a healthy warrior shield and sword---going in fully armed and better equipped than most of us. You have worked hard to maintain your good health, and relentlessly sought ways to improve it, and give you the edge.
    You are a warrior Pete. And IF it's back, may you slay it quickly and for good!
    PS: I want to go to Africa too. I'll drive :)
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #12
    janie1 said:

    Pete, if you need any
    Pete, if you need any fixing, you'll get fixed. You've accomplished so much in the past 5 months. It has NOT all been for nothing. We all think about this crap all of the time. I hate the time it robs me in just thinking about it. Keep fighting, but enjoy those wonderful kids and wife like you are doing.
    And yes, thank you for posting your records. I haven't looked at them yet but I will. You keep me on my toes every day.
    The conference in ATL, what type of doctors were there?

    janie - they were all doctors focused on an individuals biology
    and the tests to identify difieciencies. they were caring and great.
    moslty gp's

    i am teaching myself about health, i already know more than most of my naturopath's about my areas of focus and well have a bit of the crc story first hand and then second hand here.

    thanks for the kind comments. i am gutted by the result, but its just another challenge in this wonderful thing we call life.

    my onc now wants a copy of the genetic report, and can see the improvement in my health. i think she will work with my functional gp ian who is also a cancer specialist.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #13
    tommycat said:

    Hi Pete,
    The CEA numbers are
    Hi Pete,
    The CEA numbers are concerning, but as you know, only a PET or CT will let you know if you're back in the battle. If so, you have a healthy warrior shield and sword---going in fully armed and better equipped than most of us. You have worked hard to maintain your good health, and relentlessly sought ways to improve it, and give you the edge.
    You are a warrior Pete. And IF it's back, may you slay it quickly and for good!
    PS: I want to go to Africa too. I'll drive :)

    tommy dear thanks
    oh tommy thanks, yes as i said above i was shattered, and my roullette analogy helps me cope with our god aweful disease, that just keeps on taking.

    taking time, money, and ultimately lives of people we love.

    you can drive to africa, i will bring my juicer and maybe pepe some healthy snacks.
    tappass i think is what they have over in barcelona.

    i figure i will be just as relentless as this dam disease. after all that only fair.
    those few cells will sooner or later realise that only way to exist with me is peacefully, and they will switch on the dna repair genes. fix themselves up and disseaper from the bloods .

    hugs,
    pete
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #14
    pete43lost_at_sea said:

    tommy dear thanks
    oh tommy thanks, yes as i said above i was shattered, and my roullette analogy helps me cope with our god aweful disease, that just keeps on taking.

    taking time, money, and ultimately lives of people we love.

    you can drive to africa, i will bring my juicer and maybe pepe some healthy snacks.
    tappass i think is what they have over in barcelona.

    i figure i will be just as relentless as this dam disease. after all that only fair.
    those few cells will sooner or later realise that only way to exist with me is peacefully, and they will switch on the dna repair genes. fix themselves up and disseaper from the bloods .

    hugs,
    pete

    I have been stage IV for 6+
    I have been stage IV for 6+ years and the whole time i have been big on nutrition and juicing like you. I believe it makes a huge
    Difference no matter what. CEA has never been an accurate test for me. I am praying for you. Keep fighting.
  • lauragb
    lauragb Member Posts: 370 Member
    #15
    pete43lost_at_sea said:

    tommy dear thanks
    oh tommy thanks, yes as i said above i was shattered, and my roullette analogy helps me cope with our god aweful disease, that just keeps on taking.

    taking time, money, and ultimately lives of people we love.

    you can drive to africa, i will bring my juicer and maybe pepe some healthy snacks.
    tappass i think is what they have over in barcelona.

    i figure i will be just as relentless as this dam disease. after all that only fair.
    those few cells will sooner or later realise that only way to exist with me is peacefully, and they will switch on the dna repair genes. fix themselves up and disseaper from the bloods .

    hugs,
    pete

    Keep fighting your good
    Keep fighting your good fight and enjoy another beautiful day. I wanted to connect
    today with some people on here but when I get done, I hope to spend some time enjoying the
    beautiful weather we're having and to not think about cancer part of the time.

    Keeping you in the light.
    Laura
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #16
    lauragb said:

    Keep fighting your good
    Keep fighting your good fight and enjoy another beautiful day. I wanted to connect
    today with some people on here but when I get done, I hope to spend some time enjoying the
    beautiful weather we're having and to not think about cancer part of the time.

    Keeping you in the light.
    Laura

    Thanks Laura,
    I am spending
    Thanks Laura,
    I am spending the weekend camping with cubs.
    What's cancer, I will leave it at home this weekend. I really liked your suggestion.

    Hugs,
    Pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #17
    janderson1964 said:

    I have been stage IV for 6+
    I have been stage IV for 6+ years and the whole time i have been big on nutrition and juicing like you. I believe it makes a huge
    Difference no matter what. CEA has never been an accurate test for me. I am praying for you. Keep fighting.

    fighting prayers
    Thanks mate, coming from a fellow juicer they mean a lot.
    I am emotionally attached to my champion 2000 , we done lots of carrots together, today I setup auto home delivered organic veg box with juiciny carrots, and organic lake. I am so excited, actually it was my daughters job to select the organic supplier and setup our account. Not bad for a 10 year old, also the box costs 53 inc delivery.
    Hugs,pete
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #18
    praying for good news soon
    Hey, Pete.

    I'm sorry to read your news. I do hope you get better results in the very near future.

    Your story about popping in to see you kids made me get teary. I think it's so wonderful you have the ability to do that.

    *hugs*
    Gail
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #19
    dumb question
    I hate to ask a dumb question but when my CEA went up around two points my onc was preparing to start me back up on more chemo if the next round went higher (over 4.0)and you're at 28 CEA and the onc isn't concerned and thinking of chemo, or apparently I missed something here, or are they waiting to do scans for some reason first? Let me know would you Pete? I'm getting very concerned over here on this side of the world.
    Winter Marie
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #20
    pete43lost_at_sea said:

    Thanks Laura,
    I am spending
    Thanks Laura,
    I am spending the weekend camping with cubs.
    What's cancer, I will leave it at home this weekend. I really liked your suggestion.

    Hugs,
    Pete

    Hope you have a wonderful camping weekend, Pete-
    nothing quite so nice as spending time with kids. I always find it lifts my spirits. Sending big wishes your way that the CEA numbers will be due to all those nasty little cancer cells dying off, and that the scan coming up will be clear. Hugs from Seattle-Ann

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