Update on Pete's blog - more as of 2/15

Lovekitties
Lovekitties Member Posts: 3,364 Member
edited February 2014 in Colorectal Cancer #1

Pete has made the following post on his blogspot yesterday:

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Ketogenic chocolate holiday and vena superior thrombosis

So a Dr told me today I got a thrombus and could die any second, that all my supplements are bs and that my therapy mix is science fiction.

It's still a great day to be alive especially when immediate death hangs over you like now.

Regrouping and praying and breathing...

Ironically I have never felt more alive or we'll.  If I go it's my time. If I stay well I play!

Thanks for reading. Love to you all especially my family and friends.

It's been fun. I made the kids chocolates today and a nice valentines present for ellie.

What a mess to get yourself into. Only me.

The silver lining is the cancers won't kill me . That's victory anyway.

God works in mysterious ways!

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Please send prayers and good vibes to him that this can be resolved.

Marie who loves kitties

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Comments

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #2
    I sure hope he's in the hospital getting tx for that clot...

    it worries me that he says he's at home doing stuff for Valentine's Day.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    annalexandria said:

    I sure hope he's in the hospital getting tx for that clot...

    it worries me that he says he's at home doing stuff for Valentine's Day.

    Not home

    Actually I believe Pete is in Europe again and this message may have been from Switzerland.

    He had returned to do more and different threapies.

    Sad that he is alone to deal with this.

    Marie who loves kitties

  • karguy
    karguy Member Posts: 1,020 Member
    #4
    Sorry

    Sorry to hear the sad news.I wil send good vibes,and keep praying for him.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    He's a fighter, is our Pete

    He's not going down without a fight, and if he does, nobody could say he didn't give it his all. 

    But, he's a fighter and I expect to see him post here soon with all the info on his latest dilema. 

    Nobody can fight alone, so we're fighting with you Pete. 

  • ketziah35
    ketziah35 Member Posts: 1,145
    #6
    Sending you goid vibes Pete! 

    Sending you good vibes Pete! 

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    Hang in there Pete. Been

    Hang in there Pete. Been there done that. You will get through it.

  • Phil64
    Phil64 Member Posts: 838 Member
    #8
    Thinking of you Pete

    God does work in mysterious ways. And I hope that we will all be oh so happy with his next moves. You have my prayers buddy. To overcome the immediate challenges and to have fun along the way.

    Love and light to you.

    Sincerely, Philip

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #9
    Keep up the good fight

    I have told two doctors, "Obviously you are to uneducated to help me.  Please do not even think about billing me or my insurnce company.  You defrauded me when you told me you were a specialist."   Two did not bill me.  One did with a legal notice.  I sent a letter stating they did not know about new studies about my condition and to rethink their posistion of their legal abilities.   They stopped sending me letters.  lol

     

    We are all tired of ignorant doctors!   Keep searching for a compassionate and educated Doctor!

     

     

    You are always in our prayers.

    Best Always,  mike 

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #10
    mmm....

    Whoa, that fin de siecle anti-supplement line was a surprise. How did that slip past?  Guess he wanted you to go cold turkey on supplements and anything that they don't administer.  What did that (Swiss?) clinic say to pre-qualify their integrative medicine and CAM expertise?  We can assume a vena cava thrombosis is probably port catheter related? 

    Pete, so what're their recommendations?  Fragmin/Lovenox/etc  mg od/bid  monitored with PT/INR, APTT, fibrinogen, d-dimer, TAT etc frequently? Mixing heavy supplements and clot dissolving doses of heparins means somebody should do their homework or use real clinical experience to have a bullet-resistant dosing and monitoring plan. 

    Comparative assessment of low-molecular-weight heparins in cancer from the perspective of patient outcomes and survival

    Time to seriously air the different clinics' advice and bases of recommendation.  

     

     

       

     

     

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #11
    Pete,
    I have lost track of

    Pete,

    I have lost track of where you are but I don't think it is home. PLEASE get treatment for the clot. Can your family come to you? I am not you, but it seems to me, being with people you love at this time would be consoling and helpful.   Traveling with a clot though is not a good option. 

    Prayers that you get the care you need and time with your family and friends.

    CM

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #12
    Strange

    Apparently, Pete is not getting any treatment for the thrombosis as he reports that he has flown to Frankfort to continue his "usual" treatments.

    I am at a loss...will he tell his docs about the blood clot?  Does he think that it doesn't exist?

    I don't know what to make of his decisions.  At least a second opinion on the clot would be worth doing.

    I guess time will tell.

    Marie who loves kitties

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #13
    Lovekitties said:

    Strange

    Apparently, Pete is not getting any treatment for the thrombosis as he reports that he has flown to Frankfort to continue his "usual" treatments.

    I am at a loss...will he tell his docs about the blood clot?  Does he think that it doesn't exist?

    I don't know what to make of his decisions.  At least a second opinion on the clot would be worth doing.

    I guess time will tell.

    Marie who loves kitties

    thanks for the kind comments and prayers

    dear marie,

    thanks for the kind thoughts and prayers.

    i have had a relaxing weekend with a wonderful family. I am still alive and well and my blood is really thin from daily claxehan which was the advice from prof ruggerio at the gcmaf clinic , he found the port induce thrombosis. this is the 4th port.

    tomorrow i pickup rental car and drive 3 hours relaxed up to dr nesslehut to start my most important dc vaccine, this one has to take out recurrence 3 2 new spot on the surface of the liver and old slowly growing lung mets. it also will be targeting the new diagnosed potential thyroid cancer.

    Of course I will ask about the thrombosis, but its enough to kill me any second, but not bad enough to operate.

    I am seeing prof vogel for tace and cryo procedure on tuesday, his radiological expertese should be illuminating. I have some gcmaf and be added to my tace cocktail and a gcmaf suppository . all aimed at stimulating an immune response when the tumours are all specifically targetted.

    I am still taking my supplements and off labels and smoothies and doing enemas but reduced.

    All these doctors are great AND GIFTED BUT GETTING THEN to work together is tricky. Thery all know about the thrombosis and for what its worth the tace is going ahead despite its existence.

    The nature of this journey is constant challenges, but each is illuminating.

    I have lung surgery booked in 2 weeks at doctor rolle. given the challenges i figure get whatever i can get removed removed.

    So this is targetted treatment, tace and surgery and immunotherapies.

    the immunotherapies are systemic and targeted, but i will know more tomorrow after talking strategy with doctor nesslehut.

    the beauty of p2x7 vaccine is its not cancer specific, so the dendtritic cells will go for colorectal and thyroid cancer cells. if it works.

    The thrombosis treatment is daily heparin injections.

     

     

  • sharpy102
    sharpy102 Member Posts: 368 Member
    #14
    pete43lost_at_sea said:

    thanks for the kind comments and prayers

    dear marie,

    thanks for the kind thoughts and prayers.

    i have had a relaxing weekend with a wonderful family. I am still alive and well and my blood is really thin from daily claxehan which was the advice from prof ruggerio at the gcmaf clinic , he found the port induce thrombosis. this is the 4th port.

    tomorrow i pickup rental car and drive 3 hours relaxed up to dr nesslehut to start my most important dc vaccine, this one has to take out recurrence 3 2 new spot on the surface of the liver and old slowly growing lung mets. it also will be targeting the new diagnosed potential thyroid cancer.

    Of course I will ask about the thrombosis, but its enough to kill me any second, but not bad enough to operate.

    I am seeing prof vogel for tace and cryo procedure on tuesday, his radiological expertese should be illuminating. I have some gcmaf and be added to my tace cocktail and a gcmaf suppository . all aimed at stimulating an immune response when the tumours are all specifically targetted.

    I am still taking my supplements and off labels and smoothies and doing enemas but reduced.

    All these doctors are great AND GIFTED BUT GETTING THEN to work together is tricky. Thery all know about the thrombosis and for what its worth the tace is going ahead despite its existence.

    The nature of this journey is constant challenges, but each is illuminating.

    I have lung surgery booked in 2 weeks at doctor rolle. given the challenges i figure get whatever i can get removed removed.

    So this is targetted treatment, tace and surgery and immunotherapies.

    the immunotherapies are systemic and targeted, but i will know more tomorrow after talking strategy with doctor nesslehut.

    the beauty of p2x7 vaccine is its not cancer specific, so the dendtritic cells will go for colorectal and thyroid cancer cells. if it works.

    The thrombosis treatment is daily heparin injections.

     

     

    I'll be honest. I worry about

    I'll be honest. I worry about you, Pete. I wish you were with your family. Somehow that would sound a relief to me. Knowing that you are with your loved ones, and that your loved ones at least see you on a daily basis. But whatever, I am not here to tell you what to do. I will be in the background wishing you strengh, and the very best!

    Please take care!

  • thingy45
    thingy45 Member Posts: 632 Member
    #15
    sharpy102 said:

    I'll be honest. I worry about

    I'll be honest. I worry about you, Pete. I wish you were with your family. Somehow that would sound a relief to me. Knowing that you are with your loved ones, and that your loved ones at least see you on a daily basis. But whatever, I am not here to tell you what to do. I will be in the background wishing you strengh, and the very best!

    Please take care!

    Rooting

    Rooting for you Pete, behind you all the way. Do what you think is best in the knowledge that what ever you do   we are here rooting for you.

    You have accomplished so much already. One day at a time

    Hugs, Marjan

     

     

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #16
    The good vibes are appreciated

    Still alive and well. When the going gets tough the support is extra precious.

    Had 11th tace and gcmaf direct inject right liver lobe this morning. 

    My glucose is 240 which is liver stress from tace.  15 in insulin just inject here I go tumbling down.

    The irenotecan.  Mytomycin and maybe even avastin as well as b17 dca do so are killing tumor cells and providing food and antigens for activated macrophages.

    No guarantees and don't try this at home.

    I love you all and if I live and get back into remission I will be very very happy.

    I have ruffled a few feathers here and there and time is a great teacher.

    Of course I still think these therapies have enormous potential and benefits.

    Even today prof Vogel said most get here to late. Which rings true to me.

    I do wish us all the best health whatever we choose.

    It's the right choice. Because we made it.

    My fate hangs on a billion decisions to be made by my white bloods cells.

    The ball is there court. At the moment my dc are on holidays being trained to share the secret of finding any cancer cells using p2x7.

    They will share that antigen info with other antigen presenting cells in the 3 days they live. See if I am immune suppressed no effect from vaccine. 

    Enough rambling. If I do die it's not for want of trying and the thrombosis may stop my immunotherapy success but not the millions that will be saved.

    Of course it would be nice if we make it somehow.

    Hugs.

    Pete

     

     

     

     

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #17
    pete43lost_at_sea said:

    The good vibes are appreciated

    Still alive and well. When the going gets tough the support is extra precious.

    Had 11th tace and gcmaf direct inject right liver lobe this morning. 

    My glucose is 240 which is liver stress from tace.  15 in insulin just inject here I go tumbling down.

    The irenotecan.  Mytomycin and maybe even avastin as well as b17 dca do so are killing tumor cells and providing food and antigens for activated macrophages.

    No guarantees and don't try this at home.

    I love you all and if I live and get back into remission I will be very very happy.

    I have ruffled a few feathers here and there and time is a great teacher.

    Of course I still think these therapies have enormous potential and benefits.

    Even today prof Vogel said most get here to late. Which rings true to me.

    I do wish us all the best health whatever we choose.

    It's the right choice. Because we made it.

    My fate hangs on a billion decisions to be made by my white bloods cells.

    The ball is there court. At the moment my dc are on holidays being trained to share the secret of finding any cancer cells using p2x7.

    They will share that antigen info with other antigen presenting cells in the 3 days they live. See if I am immune suppressed no effect from vaccine. 

    Enough rambling. If I do die it's not for want of trying and the thrombosis may stop my immunotherapy success but not the millions that will be saved.

    Of course it would be nice if we make it somehow.

    Hugs.

    Pete

     

     

     

     

    Good luck Pete

    It's a fight for your life, so you do whatever you need to do. 

    No judgment from me. We are all in this fight together. We learn from each other.

    I'm hoping you can kick cancer's butt!

    Lin

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #18
    pete43lost_at_sea said:

    The good vibes are appreciated

    Still alive and well. When the going gets tough the support is extra precious.

    Had 11th tace and gcmaf direct inject right liver lobe this morning. 

    My glucose is 240 which is liver stress from tace.  15 in insulin just inject here I go tumbling down.

    The irenotecan.  Mytomycin and maybe even avastin as well as b17 dca do so are killing tumor cells and providing food and antigens for activated macrophages.

    No guarantees and don't try this at home.

    I love you all and if I live and get back into remission I will be very very happy.

    I have ruffled a few feathers here and there and time is a great teacher.

    Of course I still think these therapies have enormous potential and benefits.

    Even today prof Vogel said most get here to late. Which rings true to me.

    I do wish us all the best health whatever we choose.

    It's the right choice. Because we made it.

    My fate hangs on a billion decisions to be made by my white bloods cells.

    The ball is there court. At the moment my dc are on holidays being trained to share the secret of finding any cancer cells using p2x7.

    They will share that antigen info with other antigen presenting cells in the 3 days they live. See if I am immune suppressed no effect from vaccine. 

    Enough rambling. If I do die it's not for want of trying and the thrombosis may stop my immunotherapy success but not the millions that will be saved.

    Of course it would be nice if we make it somehow.

    Hugs.

    Pete

     

     

     

     

    Sending my very best to you

    Sending my very best to you Pete .. keeping you in my thoughts and prayers!!

     

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #19
    hippiechicks said:

    Sending my very best to you

    Sending my very best to you Pete .. keeping you in my thoughts and prayers!!

     

    picture of thrombosis on blog

    how can something so small kill you so fast? thats what the doctors say. 

    my tip is get an ultrasound after you get a port installed.

    http://petertrayhurn.blogspot.de/2014/02/in-poo-cea-200-and-eviction-threatens.html

    oh and cea 200, recurrence 3 is now a full blown cyclone

    this will be my finest hour, hopefully not my last. might as well test immunotherapies out on something aggressive.

    after all what choice to i have.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #20
    pete43lost_at_sea said:

    picture of thrombosis on blog

    how can something so small kill you so fast? thats what the doctors say. 

    my tip is get an ultrasound after you get a port installed.

    http://petertrayhurn.blogspot.de/2014/02/in-poo-cea-200-and-eviction-threatens.html

    oh and cea 200, recurrence 3 is now a full blown cyclone

    this will be my finest hour, hopefully not my last. might as well test immunotherapies out on something aggressive.

    after all what choice to i have.

    Try it all, Pete

    Good luck with everything you try. I hope it keeps you around a whole lot longer. 

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #21
    pete43lost_at_sea said:

    picture of thrombosis on blog

    how can something so small kill you so fast? thats what the doctors say. 

    my tip is get an ultrasound after you get a port installed.

    http://petertrayhurn.blogspot.de/2014/02/in-poo-cea-200-and-eviction-threatens.html

    oh and cea 200, recurrence 3 is now a full blown cyclone

    this will be my finest hour, hopefully not my last. might as well test immunotherapies out on something aggressive.

    after all what choice to i have.

    thyroid markers with chemo

    Hypothyroidism in patients with colorectal carcinoma treated with fluoropyramadines

    We aim to keep my wife's fT3 above the lower limit value, TSH under 2, near 1.2, with desiccated thyroid.  Don't know what "optimum" fT3 is for mCRC. Doctors oriented toward natural medicine prefer fT3 value at/above the midrange for noncancer hypothyroid patients to feel best. There seems to be a surprising dearth of easy to find papers in the CRC area. 

     

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