started removab in hallwang.

It's 8 hours on the drip.
See my blog for photos
Hugs,
Pete
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Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Pete
    Best wishes that all turns out well for you on your journey.

    For those newer members, the blog pete referrs to can be found at:

    petertrayhurn.blogspot.com
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Dear Pete
    Best wishes that all turns out well for you on your journey.

    For those newer members, the blog pete referrs to can be found at:

    petertrayhurn.blogspot.com

    dearest Marie, thanks.
    My temp peaked 40, been vomit using, shivering, etc.

    This is the future of stage 4 treatmentT I think.

    I have been run over by a semi trailer, I am exhausted but confident, I have had a strong reaction, my tumours are reining

    Time will tell, if this therapy saves my life, is it a magic bullet.

    Hugs,
    Pete

    Ps this maybe the post that saves 1000s of lives, starting with my own.
  • janie1
    janie1 Member Posts: 753

    dearest Marie, thanks.
    My temp peaked 40, been vomit using, shivering, etc.

    This is the future of stage 4 treatmentT I think.

    I have been run over by a semi trailer, I am exhausted but confident, I have had a strong reaction, my tumours are reining

    Time will tell, if this therapy saves my life, is it a magic bullet.

    Hugs,
    Pete

    Ps this maybe the post that saves 1000s of lives, starting with my own.

    Thinking about you Pete.
    Thinking about you Pete. Hang in there.
    ( I need to update my passport........I need to drop every F-bomb available on this slimey goop. It takes time and energy to find someone
    Who is willing to truly help.)
    Be safe.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    janie1 said:

    Thinking about you Pete.
    Thinking about you Pete. Hang in there.
    ( I need to update my passport........I need to drop every F-bomb available on this slimey goop. It takes time and energy to find someone
    Who is willing to truly help.)
    Be safe.

    Good luck with this Pete,
    Good luck with this Pete, hope it works amazing for you!!!
  • annalexandria
    annalexandria Member Posts: 2,571
    Good luck!
    If this turns out to be the cure, I'm flying Down Under and buying you a drink! Ann Alexandria
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Good luck!
    If this turns out to be the cure, I'm flying Down Under and buying you a drink! Ann Alexandria

    thanks smokey, annalexanria and janie
    kind thoughts when you are a world away from family and friends makes me smile.

    http://petertrayhurn.blogspot.de/2012/10/removab-at-hallwang_11.html#!/2012/10/removab-at-hallwang_11.html

    doing chemo, radio embilation on monday of most of the mets. will post more when I know more. I goto get over the initial reaction to removab. I am planning to stay here for at least 3 months. looking at buying a car and getting an apartment.

    Godbless us all.

    hugs,
    Pete

    PS doc vogel injects avastin staight into the tumour, so I guess you can say I am on chemo as of Monday. I am so tired, off to sleep. All I can manage is a few updates of my removab post.

    PPS I gaved in on the ketogenic diet and had sorbet icecream tonight, it was sensational. I will sort out my blood sugars and ketones when my minerals and bloods have stabilised.

    PPPS If this woks I will dive past the german little pharma and buy some shares, It will be good for my long term future. now thats positive thinking.

    PPPPS I am getting removab IV systemically, I have asked to get it peritoneally as well, time will tell. I signed the paperwok for off label removab use. I am an off label kind of guy.
  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    poked
    ...injects avastin straight into the tumour
    What size tumor(s), how deep and what size needle are we talking? With ultrasound for guidance into a blood vessel?
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member

    thanks smokey, annalexanria and janie
    kind thoughts when you are a world away from family and friends makes me smile.

    http://petertrayhurn.blogspot.de/2012/10/removab-at-hallwang_11.html#!/2012/10/removab-at-hallwang_11.html

    doing chemo, radio embilation on monday of most of the mets. will post more when I know more. I goto get over the initial reaction to removab. I am planning to stay here for at least 3 months. looking at buying a car and getting an apartment.

    Godbless us all.

    hugs,
    Pete

    PS doc vogel injects avastin staight into the tumour, so I guess you can say I am on chemo as of Monday. I am so tired, off to sleep. All I can manage is a few updates of my removab post.

    PPS I gaved in on the ketogenic diet and had sorbet icecream tonight, it was sensational. I will sort out my blood sugars and ketones when my minerals and bloods have stabilised.

    PPPS If this woks I will dive past the german little pharma and buy some shares, It will be good for my long term future. now thats positive thinking.

    PPPPS I am getting removab IV systemically, I have asked to get it peritoneally as well, time will tell. I signed the paperwok for off label removab use. I am an off label kind of guy.

    Questions
    You mention that you are planning to stay for at least 3 months.

    Have you given up the idea of having HIPEC?

    Will your family be joining you?

    What has occurred there that has made you consider changing your original plan of only 1 month?

    Just wondering.

    Marie who loves kitties
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Questions
    You mention that you are planning to stay for at least 3 months.

    Have you given up the idea of having HIPEC?

    Will your family be joining you?

    What has occurred there that has made you consider changing your original plan of only 1 month?

    Just wondering.

    Marie who loves kitties

    great questions marie
    i am so impressed with onc 6 dr copic, that the idea of going home to get carved and diced with peritonecomy and hipec is prematue until I have exhausted advanced german care options. I have also had some pm's from friends here that have caused me to step carefully re hipec just at this point. so honestly i don't know how long I will stay. I feel i have exhausted most of the best care options conventional and alternative in sydney and germany offers moe potential.

    I feel much more optomism here with these therapies, that they are untested and leading edge. its just the type of treatment i want and at least i am not taking undue risk with my own life, now i can pay a professional to take those risks. i have been impressed with the care i have recieved. of course time will tell, how this translates to survival.

    my bp is finally back to normal , my bibirubin is settling down, its been up since removab 4 days ago. the acid test is i have energy again. just in time as they considered delaying the chemo emblisiation if i was not up to it.

    a few factors have prompted me to consider staying longer, one is germany is the home of low dose hyperthermia. my tumour expresses the heat shock protien and is senstive to avastin. so i like the idea of doing 4 weeks at hallwangen and then 4 weeks at a cheaper specialist oncothermia clinic. then I should have an idea of how effective the regime has been.

    hipec will always be their for me, when i get home.

    the clinics are a place of healing, they are no place for wife and kids. i am wecked most days. I am giving my wife a break from her role in my care, i am paying for wold class care, and getting it. so she might as well have a well deseved break. she has eally get her hands full with the home and the kids. as you know how stressful the domestic issues are i am in no hury to return to the pressure cooker. I am just watching from afar to see how wife and kids cope. i can send them love and kisses. i think they are better at home and i am bette off here. it takes all my time and effort to keep these doctors on their toes.

    I am the first patient here to teach them qigong based coffee enemas to lower bilirubin and get my liver enymes down so i can get tomorrows therapy. I suggested it to the oncologist here, he said ok not a bad idea. you keep the suggestions coming. now my odd ball ways are not for most patients agreed, but i tell you with confidence, i am getting the best value out of everyday in this clinic.

    I about 2 months it will be school holidays, maybe then the wife and kids can come over for a 12 month german exchange or a 6 week holiday. I will let where I percieve my best chances for recovery lie.

    thanks for asking and caring, things are really pretty fluid, and will be diven by the result of the therapies.

    hugs,
    Pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    tanstaafl said:

    poked
    ...injects avastin straight into the tumour
    What size tumor(s), how deep and what size needle are we talking? With ultrasound for guidance into a blood vessel?

    thanks tans
    i will answer tomorrow, just google doctor vogel, you'll find the papers. my lung met is 9mm, the largest liver is 3x2 and the small is 1x1.

    send some good vibes my way for tomorrow, its a big day on the road to cure!

    hugs,
    Pete
  • Minnesotagirl
    Minnesotagirl Member Posts: 141

    thanks tans
    i will answer tomorrow, just google doctor vogel, you'll find the papers. my lung met is 9mm, the largest liver is 3x2 and the small is 1x1.

    send some good vibes my way for tomorrow, its a big day on the road to cure!

    hugs,
    Pete

    Thinking of you Pete
    Hi Pete,

    I haven't posted for awhile but I have been following your journey. I was so sorry to see that your cancer spread to the liver and lung. I believe you were originally diagnosed Stage 3 Rectal like me in 2010. Good vibes and blessings to you Pete on this road to a cure! I pray for you everyday on my 3-4 mile walk ~ just wanted to let you know you are in my thoughts.
    Give it all you got Pete and stay well, strong and positive like you have been from the beginning of your journey.

    "Minnesotagirl"
  • pepebcn
    pepebcn Member Posts: 6,331

    dearest Marie, thanks.
    My temp peaked 40, been vomit using, shivering, etc.

    This is the future of stage 4 treatmentT I think.

    I have been run over by a semi trailer, I am exhausted but confident, I have had a strong reaction, my tumours are reining

    Time will tell, if this therapy saves my life, is it a magic bullet.

    Hugs,
    Pete

    Ps this maybe the post that saves 1000s of lives, starting with my own.

    Rmovab = catumaxomab I thought it was for cure ascites isn't
    Pete? Does it work as chemo as well?
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Thinking of you Pete
    Hi Pete,

    I haven't posted for awhile but I have been following your journey. I was so sorry to see that your cancer spread to the liver and lung. I believe you were originally diagnosed Stage 3 Rectal like me in 2010. Good vibes and blessings to you Pete on this road to a cure! I pray for you everyday on my 3-4 mile walk ~ just wanted to let you know you are in my thoughts.
    Give it all you got Pete and stay well, strong and positive like you have been from the beginning of your journey.

    "Minnesotagirl"

    thanks minnesotagirl
    i sincerely appreciate and highly value your prayers. I tell you I am giving this my all, as you know. all my spirit and my money. I have stopped my supplements and ketogenic diet for the time being.

    I have to really rest and heal, my liver has to bounceback from the removab before surgical treatment of the mets can occur, so here is just to living today really well.

    some interesting characters at the clinic, one lovelly man mohamed has invited me visit his house in morocco for a week between treatments. if the doctors said ok, then I would be tempted.

    enjoy your walk, Its crazy I am not even allowed to walk for 10 minutes, it really elevates my biblirubin.

    hugs,
    Pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    pepebcn said:

    Rmovab = catumaxomab I thought it was for cure ascites isn't
    Pete? Does it work as chemo as well?

    thanks my dear pepe
    no,
    ascites that is the euro approved use, now trion pharma the devleloper has many similar antibody products coming but , for removab well its off label use has been tired in the aussie guinnea pig here. I am still alive but I tell you it was easier to walk the 100km walk in the relay for life a few months back than recover from removab. just my personal response, we are all unique.

    its using my immune system to get results, thats the theory. god i hope this works in practice my dear friend. if you pop over for a visit we cannot even go for a walk, it will just be talk. many more months of interesting therapies ahead. certainly a different path than months of bolus 5fu/avastin or irenotecan.

    I have so much support here, half around the world from my family.

    so removab aims to train our immune system to eat the ecamp receptor positive tumour cells.

    the doctor greg here put my met surgery on hold a week until my liver bounces back, I feel that I am recieving very good care, but time will tell.

    they are even making a girdle here to hold my ever growing hernia that noone in sydney wanted to fix. I have always wanted to go to morroco. the real life bucket list.

    its a beautiful planet with wonderful people, I am glad I like travelling, morocco sounds better.

    hugs,
    Pete
  • janderson1964
    janderson1964 Member Posts: 2,215

    thanks minnesotagirl
    i sincerely appreciate and highly value your prayers. I tell you I am giving this my all, as you know. all my spirit and my money. I have stopped my supplements and ketogenic diet for the time being.

    I have to really rest and heal, my liver has to bounceback from the removab before surgical treatment of the mets can occur, so here is just to living today really well.

    some interesting characters at the clinic, one lovelly man mohamed has invited me visit his house in morocco for a week between treatments. if the doctors said ok, then I would be tempted.

    enjoy your walk, Its crazy I am not even allowed to walk for 10 minutes, it really elevates my biblirubin.

    hugs,
    Pete

    Darn it Pete. It really
    Darn it Pete. It really breaks my heart to see you go through this. You are always in my prayers.
  • marbleotis
    marbleotis Member Posts: 720 Member

    thanks tans
    i will answer tomorrow, just google doctor vogel, you'll find the papers. my lung met is 9mm, the largest liver is 3x2 and the small is 1x1.

    send some good vibes my way for tomorrow, its a big day on the road to cure!

    hugs,
    Pete

    Sending good thoughts your way
    Please keep up posted. You are an inspiration!!!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Darn it Pete. It really
    Darn it Pete. It really breaks my heart to see you go through this. You are always in my prayers.

    thanks for caring jeff
    but smile a big smile me friend, i am alive, i am getting the treatment i think will give the best prospect of cure. not just another few months, all our journeys are unique, mine is no exception. but my journey is so much more easier with friends and support.

    but pray jeff, like i am that this therapy works, that it works for me, if it works for one early stage 4, then dare we dream the dream, maybe just a few others.

    i have always had faith and hope. off loading the responsibility to the doctors here and relaxing myself has been such a relief.

    all my energy is devouted to rest and healing for the next few months.

    if your heart breaks let it be with joy, i am glad to have an really strong reaction, it means i am likely to be a removab responder.

    I have been here a week and the tests are coming back. interesting days, they have some bone marrow therapies to get my platlets and white cells up. starting those real soon.

    i gave the doctor greg, my supplement list, i will see what he thinks tomorrow.

    I have jumped on the scales and I think i have gained a kilogram in a week.

    I am rebooked to have the lung and liver met sorted next monday. my liver numbers are all heading in the right direction, at last.

    Be happy for me jeff, i really are, these guys are leading edge alternative and conventional. i am optomistic. if it works for one, well, here is hoping!

    hugs,
    Pete

    ps i will likely get an apartment in frankfurt or munich. any of my csn friends pop in the a chat and dinner and some good scnaps.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Sending good thoughts your way
    Please keep up posted. You are an inspiration!!!

    thanks marbleotis
    thats really kind, i do feel inspired in a peaceful way.
    you know i find so much inspiration around me, on csn, in hallwang, in the german people.
    maybe i have the chance to reflect or share the inspiration i am receiving, if thats the case then so be it.

    i am truly grateful for my life, that i am here and that my days are filled with a new found peace. with alot more BEING and alot less DOING.

    at hallwang i am letting the doctor earn their fee, i am focusing on doing my part, relax, rest, sleep and heal.

    hugs,
    Pete
  • k44454445
    k44454445 Member Posts: 494
    Pete
    i have been following your posts & you are a very brave guy! i admire you for that. i am so happy that you are pleased with your treatments. you are helping all of us by posting about the medical aspect but especially about how personally you are doing. and it is no surprise that you still have your usual upbeat positive attitude! and after all you have been thru. lots of prayers coming your way!
    hugs
    judy
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    k44454445 said:

    Pete
    i have been following your posts & you are a very brave guy! i admire you for that. i am so happy that you are pleased with your treatments. you are helping all of us by posting about the medical aspect but especially about how personally you are doing. and it is no surprise that you still have your usual upbeat positive attitude! and after all you have been thru. lots of prayers coming your way!
    hugs
    judy

    thanks judy
    i still remember how strange it was to do my first post, today was a good day a hallwang, about 6 hours on the drips. a good consult with doctor schwab and copic re the plan short and medium term. i am getting stems cells to boost my low platlets and white blood cells, i am on so many pills and drips. lots of the good old basics like alpha lipoic, fish oils, minerals, zinc. they are really trying to get the platinum out. they have recommended edta. so that maybe coming , i am also getting photoporessece to boost my blood. so while my liver heals, other important aspects of my biology being addressed. must still be sleeping 14 hours a day.
    8 durung the night and 6 during the day.

    i did spend some time reading and praying today, not an hour goes past when i don't reflect on the beauty i have around me. the lady in the kitchen, had her 11 year old daughter, helping. my daughter now has a new pen friend, both the girls love horses.

    thank you for the prayers judy, I have faith in our God, miracles are possible, and i am asking.

    godbless us all.

    hugs,
    Pete

    ps even tonight I had a crosset delivered to help with my hernia. the delivery lady is going to try and find me a place to live thats cheaper than the clinic and i can come here as an out patient.