coffee in duderstadt - out of the pan and into the fire "dendritric cell vaccine"

2

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Dendritic
    Ok, there are a few variations on the DC vax.
    These vaccines have been used by themselves, with tumour or with oncolytic viruses.

    Dr. Chang in NY works with Dr. Marx and Nesslehut from Germany, they do a DC vax combined with NDV, cost is approx. 3000 euros per injection. There is also a Dr. in Cologne doing the same. Im guessing they use strain MTH-68h or PV701.
    I think the full treatment would be $30-$50k.

    We want to do a 'tumor' version, Prof. Slavin in Israel does this, cost is $35k for full course 12 injections over 24 weeks. He needs tumor frozen in liquid nitrogen. (this is the only place doing this I have found)

    Saisei mirai in Japan do a vacccine from a tumor sample not frozen (formalin) cost is $18k and takes up to 2 months.

    DC vax is also available in China, cost is $35k (Google it)

    This treatment has been tried more for brain tumours, some people have been 'cured' most have not, when it 'works' it gives the immune system a memory, cancer does not come back. Some people have had regression and very long remission but still eventually died.

    This works best with minimum disease, tumour sample of around 2 grams is needed for the lysate version, seems if radiation is used after surgery it will negatively affect the outcome as radiation 'changes' the remaining cells.

    Pubmed is full of papers on DC vax, another one is about to be FDA approved ( for GBM ) there are clinical trials all the time for these for various cancers, treatment is low toxicity and out patient based, it has been combined with low dose metronomic chemo for better effect.

    Depleting T-reg cells with chemo before injection potentiates the treatment, also being tested are adjuvants like imiquimod at the injection site, we will be doing these. Imiquimod also extends the lifespan of DC cells.

    "the 3-year survival rate had increased from 3.2% in historical control patients to 37.5% in vaccinated grade IV glioma patients; and the 5-year survival rate had increased from 0% for historical control patients to 18.8% in vaccinated grade IV glioma patients"

    tony, if i had a hat on i would take it off to you
    your research are invaluable and synergistic, you know they took my blood last monday.
    just a few tips, have they done the full immune status yet, something about the cd4/cd8 ratio and a few others.

    and then the level of leukocytes for leukophersis if they use it in israel.

    as it was explained you want your immune system in the optimimum condition when the vaccine is injected.

    if you do all the israel stuff and i do all the german ( which includes the usa chang ) then between us we got at least a patients persepctive of a very very dynmic field.

    my cost estimate is $4000 euro but that only the beginning, not sure of repeat visits but i think its less.

    goodluck and thanks for adding such really valuable info. for the record i had ndv yesterday and i am still feeling great and happy a few crc's have died. hopefully lots.
    in 5 more days the first vaccine is injected and more tumours cells can go to hell.

    this stuff beats hardcore chemo everyday of the week in my books. how my friends here with a disabled, non existent or non functioning immune system transition to dc therapy is another discussion. but one that would be worth having if this therapy is effacious.

    now why they don't give every stage 3 a dc shot for the first few years, instead of 6 blood moths of folfox. gee in my books thats a no brainer. one day soon we will look back at our current treatment protocols and cry.

    hugs,
    Pete

    ps thanks mwnn
  • annalexandria
    annalexandria Member Posts: 2,571 Member

    thanks Kim, you are a real mate!
    I hate tofu, but still eat it.
    Tonight I did weights and yoga tonight, so I needed some protein.
    Google xmas goose veganism is for the birds
    My diet is evolving, the goose was exceptional.
    Hugs,
    Pete

    Like Tommycat,
    I pretty much have no clue, but no matter what, I wish you the best in your search for a cure. I hope to be able to say "I knew him when...", once you are the famous Patient Zero in the world of cancer treatment! Hugs~Ann Alexandria
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Like Tommycat,
    I pretty much have no clue, but no matter what, I wish you the best in your search for a cure. I hope to be able to say "I knew him when...", once you are the famous Patient Zero in the world of cancer treatment! Hugs~Ann Alexandria

    thanks ann and everyone
    dear ann,-alexandria,

    if i am 0 you can be 1 and the first 1000 are reserved for csn colorectals.

    lots of nice comments, heck why would you want to checkout early with such interesting and caring friends, even if our conversation is a touch morbid and repeatitive.

    we should have a no cancer chat day when the only posts are about things in life besides cancer. now that would be a change.

    i am so easily over excited about cancer research papers and books, i have a pretty good feeling i am getting the best care i can find and to have mwnn aka tony come on the post with lots of supportitive cool stuff then i have more faith.

    imagine we can all do these super effective DC treatments, go into chemo free remission and then we could to this really cool 600km walk in spain that famous. i am sure pepe would be in on it. alas i am dreaming again and soon i will be dreaming for real.

    sweet dreams, its late and everyone in germany should be asleep.

    hugs,
    Pete
  • manwithnoname
    manwithnoname Member Posts: 402

    tony, if i had a hat on i would take it off to you
    your research are invaluable and synergistic, you know they took my blood last monday.
    just a few tips, have they done the full immune status yet, something about the cd4/cd8 ratio and a few others.

    and then the level of leukocytes for leukophersis if they use it in israel.

    as it was explained you want your immune system in the optimimum condition when the vaccine is injected.

    if you do all the israel stuff and i do all the german ( which includes the usa chang ) then between us we got at least a patients persepctive of a very very dynmic field.

    my cost estimate is $4000 euro but that only the beginning, not sure of repeat visits but i think its less.

    goodluck and thanks for adding such really valuable info. for the record i had ndv yesterday and i am still feeling great and happy a few crc's have died. hopefully lots.
    in 5 more days the first vaccine is injected and more tumours cells can go to hell.

    this stuff beats hardcore chemo everyday of the week in my books. how my friends here with a disabled, non existent or non functioning immune system transition to dc therapy is another discussion. but one that would be worth having if this therapy is effacious.

    now why they don't give every stage 3 a dc shot for the first few years, instead of 6 blood moths of folfox. gee in my books thats a no brainer. one day soon we will look back at our current treatment protocols and cry.

    hugs,
    Pete

    ps thanks mwnn

    Have a look
    http://www.youtube.com/watch?v=FzrHS5YgbbE

    2 parts on Youtube giving a brief description about whats on offer here.
    If you google shimon slavin you will see he has a very impressive CV

    He also uses NDV and Gc-maf

    I watched an hour lecture he gave in front of peers, unfortunately in Hebrew, but this guy knows his stuff.

    He also confirmed yesterday we can continue NDV with his vaccine treatment, says it wont interfere and might potentiate it.

    Our son is getting back to himself, last op. was hardest for him, I wish I had his strength.

    Look up AHCC immune booster, they use it routinely in Japan.

    http://www.ahccresearch.com
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Have a look
    http://www.youtube.com/watch?v=FzrHS5YgbbE

    2 parts on Youtube giving a brief description about whats on offer here.
    If you google shimon slavin you will see he has a very impressive CV

    He also uses NDV and Gc-maf

    I watched an hour lecture he gave in front of peers, unfortunately in Hebrew, but this guy knows his stuff.

    He also confirmed yesterday we can continue NDV with his vaccine treatment, says it wont interfere and might potentiate it.

    Our son is getting back to himself, last op. was hardest for him, I wish I had his strength.

    Look up AHCC immune booster, they use it routinely in Japan.

    http://www.ahccresearch.com

    thanks mwnn
    i could not get a straight definitive answer out of dr nestlehut yet, so I am interested that slavin uses ndv and gc-maf, really interested, its the point i need to extract an answer out of nestlehut. i am slurping maf314 as i type to activate the macropages in the tonsils.

    goto the transcript. to me its gold.
    http://forums.phoenixrising.me/index.php?threads/professor-marco-ruggiero-on-maf-314-video.18909/

    the best bit is here(11:23) So this is the first trick. The GcMAF that is a protein stimulates directly your macrophages in your mouth, in your throat. Then of course, it goes into the stomach and in the stomach there is the chloride (11:41 can’t quite grasp the word used here), there are the proteases that destroy most of the proteases but even there you have tricks, two tricks. The caseins which are proteins present in the milk, MAF 314 derives from milk and colostrums just like a regular yogurt, you start your preparation with whole milk. And so the caseins protect and ? the MAF 314. Since they are in huge amounts, it is as if they distract the proteolytic enzymes and the digestive enzymes of the stomach and so the digestive enzymes are busy destroying the caseins and they let some GcMAF pass through.

    off to get my second shot of ndv and hyperthermia, hopefully dear dr N has sometime to talk to me today, thanks to your kind replies, i have somethings to discuss besides the weather and how sexy his nurses are. I have asked 2 out for dinner and been rejected. I am crushed.

    my tktl1 protien just came in this morning, i am on the ketogenic diet as of breakfast, with map. see the details on the site below. i met the doc at the conference who developed this, i would give to any really sick cancer patient, may help give a few extra days.

    hugs,
    Pete

    ps I just got an email from these guys. I might become the australia asian distributor if the products help save my butt. not to make money, just to help save lives. I got enough $

    http://www.drreinwald.de/dr-reinwald-vital.html
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    17 million trainer tumour killers were released into pete, yippe
    Thats what happened yesterday, only cost 6500 euro, getting another shot early feb and then monthly until remission of death. if I am blessed to get to need then the injections will go out to bi monthly, them quartlerly etc etc , but with metatstatic you are never free.

    yep its alot of dollars, I am teaching the kids myself starting next feb, as we won't have money for a fancy college education, but whats dad worth ? heaps i say, wife agrees.

    so the german experiment continues with your favourite aussie volunteer.

    send a positive thought or prayer my way, I am lonely and its chilling here ( emotionally and literally ) looking over the precipice. Its along fall, and I am concerned about my direction. I am worried that I maybe heading down rather up. ie hell versus heaven when this current adventure is all over, whenever that is going to be.

    I could not get any prognostic estimate from dear doctor, just some make it into remission, so thats still my mission. I will be here for about about a year and yes, thats alot of euro's but possibly still cheaper than chemo shots.

    Info and details are here about the vaccine and the science
    http://immuntherapie.net/anfahrt.php

    we went over the most detailed analysis of my immune system in 5 minutes, i recorded it, its like gold to me. there is so much to helping our immune system to be done, not destroying it with chemo is foremost in my mind. but thats determined by my treatment selection and the opportunity my life insurance payoutt provides. If chemo was my only choice I would embrass it, or tcm or whatever my decision. self directed change is my new mantra.

    I really look at me in the vaccine, those little troublessome pete's have got alot of good work to do. if they try has hard as i do, the bigger version of themselves then my cure is assured. I hope and pray they are up to the task. Its my job to help them, so I am on
    http://livecelltreatment.com/http:/livecelltreatment.com/thymus-therapy

    now depending on the ratios in my immune system, different adjuvanant therapies could be used.

    I am quiet proud to be the first colorectal person on the planet to have the vaccine activated with a new peptide as well as newcastle virus disease.

    this is an expensive and seriously scientific and experimental approach with no guarantees but it offers the chance of cure thats so much more compelling for me personally than the current offering from conventionl medicine.

    I got to take a few risks if I want to stay in this game. the game of life that is.

    yesterday was a great day in the journey, those little trained killers are working in me 24 x 7 by 60 days until they die. I wished they could reproduce, but alas I got to get another shot, hence another weeks therapy early feb. maybe this is my xmas present early.

    got a pet scan on friday 8am and chemo embolization 1pm, the mri with contrast and the pet will dictate the targets of mets to be selectively poisoned, likely with avastin, irenotecan and mitomycinin. wish me luck, as I wish us all luck in whatever treatment we choose faith and confidence in what we have access to is the best approach.

    hugs,
    Pete

    ps another update from snowy germany.
    pps pm me if you are interested in the risky side of colorectal treatments, its lonely in germany. I know the best bars, hotels, massage joints, physios, restaurants and have topped
    220km/hour on the autobahn, so I can get around germany fast in my lovelly audi,

    PPS http://petertrayhurn.blogspot.de/2012/12/my-life-in-his-hands.html
    a picture of my vaccine and one of the newest immune system therapies delta gamma
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member

    17 million trainer tumour killers were released into pete, yippe
    Thats what happened yesterday, only cost 6500 euro, getting another shot early feb and then monthly until remission of death. if I am blessed to get to need then the injections will go out to bi monthly, them quartlerly etc etc , but with metatstatic you are never free.

    yep its alot of dollars, I am teaching the kids myself starting next feb, as we won't have money for a fancy college education, but whats dad worth ? heaps i say, wife agrees.

    so the german experiment continues with your favourite aussie volunteer.

    send a positive thought or prayer my way, I am lonely and its chilling here ( emotionally and literally ) looking over the precipice. Its along fall, and I am concerned about my direction. I am worried that I maybe heading down rather up. ie hell versus heaven when this current adventure is all over, whenever that is going to be.

    I could not get any prognostic estimate from dear doctor, just some make it into remission, so thats still my mission. I will be here for about about a year and yes, thats alot of euro's but possibly still cheaper than chemo shots.

    Info and details are here about the vaccine and the science
    http://immuntherapie.net/anfahrt.php

    we went over the most detailed analysis of my immune system in 5 minutes, i recorded it, its like gold to me. there is so much to helping our immune system to be done, not destroying it with chemo is foremost in my mind. but thats determined by my treatment selection and the opportunity my life insurance payoutt provides. If chemo was my only choice I would embrass it, or tcm or whatever my decision. self directed change is my new mantra.

    I really look at me in the vaccine, those little troublessome pete's have got alot of good work to do. if they try has hard as i do, the bigger version of themselves then my cure is assured. I hope and pray they are up to the task. Its my job to help them, so I am on
    http://livecelltreatment.com/http:/livecelltreatment.com/thymus-therapy

    now depending on the ratios in my immune system, different adjuvanant therapies could be used.

    I am quiet proud to be the first colorectal person on the planet to have the vaccine activated with a new peptide as well as newcastle virus disease.

    this is an expensive and seriously scientific and experimental approach with no guarantees but it offers the chance of cure thats so much more compelling for me personally than the current offering from conventionl medicine.

    I got to take a few risks if I want to stay in this game. the game of life that is.

    yesterday was a great day in the journey, those little trained killers are working in me 24 x 7 by 60 days until they die. I wished they could reproduce, but alas I got to get another shot, hence another weeks therapy early feb. maybe this is my xmas present early.

    got a pet scan on friday 8am and chemo embolization 1pm, the mri with contrast and the pet will dictate the targets of mets to be selectively poisoned, likely with avastin, irenotecan and mitomycinin. wish me luck, as I wish us all luck in whatever treatment we choose faith and confidence in what we have access to is the best approach.

    hugs,
    Pete

    ps another update from snowy germany.
    pps pm me if you are interested in the risky side of colorectal treatments, its lonely in germany. I know the best bars, hotels, massage joints, physios, restaurants and have topped
    220km/hour on the autobahn, so I can get around germany fast in my lovelly audi,

    PPS http://petertrayhurn.blogspot.de/2012/12/my-life-in-his-hands.html
    a picture of my vaccine and one of the newest immune system therapies delta gamma

    Dear Pete
    I am having a bit of difficulty following you and your treatment as you move around Germany.

    Could you take a moment and answer the following for me?

    I take it you have left the clinic you originally went to in Germany.
    1. Did you leave because they could not offer you any further treatment?
    2. Did you have any positive results from their treatment as seen on CEA level or
    scan results?

    I take it you have moved to another clinic in Dunderstaht.
    1. How did you determine this was the next place to try?
    2. How long do they think it will be to know if new treatment is effective?

    I am sure that somewhere in your posts or blog you have given this info, but I tend to get lost with all the medical/scientific stuff. I know you recently wrote that CEA went down dramatically. Which treatment were you on when that occurred?

    You mentioned that you will have scans and blood work done at home over your Christmas holiday. Is there any reason to beleive that they are done differently or will have different results from what you have gotten in Germany?

    As always wishing you the best.

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

    Dear Pete
    I am having a bit of difficulty following you and your treatment as you move around Germany.

    Could you take a moment and answer the following for me?

    I take it you have left the clinic you originally went to in Germany.
    1. Did you leave because they could not offer you any further treatment?
    2. Did you have any positive results from their treatment as seen on CEA level or
    scan results?

    I take it you have moved to another clinic in Dunderstaht.
    1. How did you determine this was the next place to try?
    2. How long do they think it will be to know if new treatment is effective?

    I am sure that somewhere in your posts or blog you have given this info, but I tend to get lost with all the medical/scientific stuff. I know you recently wrote that CEA went down dramatically. Which treatment were you on when that occurred?

    You mentioned that you will have scans and blood work done at home over your Christmas holiday. Is there any reason to beleive that they are done differently or will have different results from what you have gotten in Germany?

    As always wishing you the best.

    Marie who loves kitties

    some answers marie
    I take it you have left the clinic you originally went to in Germany.
    1. Did you leave because they could not offer you any further treatment?
    the clinic was hallwang, they are oncology based as well natural therapies, kind of the one stop shop. they organised most secondary therapies, they organised dendritic cell vaccine in duderstadt and prof vogel chemo embolisation in frankfurt.
    2. Did you have any positive results from their treatment as seen on CEA level or
    scan results? YES CEA WENT DOWN FROM 1770 to 39 IN 7 weeks, also saw some shrinkage between scans with prof vogel.

    I take it you have moved to another clinic in Dunderstaht.
    1. How did you determine this was the next place to try? its was mutual, but suggested by dr kopic the oncologist.
    2. How long do they think it will be to know if new treatment is effective?
    about 2 months to see if dendritic cell therapy is effective, its hard as i am doing another chemo embolisation on friday, with the pet directing the embolisation target. its not possible to isolate one factor, but i know for sure REMOVAB causes a massive CEA spike, so it certainly killed my tumour cells, i also felt like craap for a week after the first shot only 5mcg.

    I am sure that somewhere in your posts or blog you have given this info, but I tend to get lost with all the medical/scientific stuff. I know you recently wrote that CEA went down dramatically. Which treatment were you on when that occurred? The spike was caused by removab, the total fall over 7 weeks a combination of removab and 2 chemo embolisations and some very very low dose chemo ( targetting tumour stems cells not the tumour )

    You mentioned that you will have scans and blood work done at home over your Christmas holiday. Is there any reason to beleive that they are done differently or will have different results from what you have gotten in Germany?
    I am doing the tests at home so i can prove beyond any doubt how accurate and effective the german treatments are. Aussie doctors would say the scans and the test are fake or false. so I will do a round of pet and angio ct end of january ( for free )

    I am spending 3000 on the 8am pet so as to see how i am going. The german doctors complain about the quality of us and aussie pets and their reporting.

    i am back to duderstadt 3 feb for another 7 days therapy an another vaccine shot. and then off to prof vogel and my 4th chemo embolisation and down to hallwang for a for weeks r and r where i suspect i will get another round of removab. at some point i may be ned in process. thats the goal.

    i have plenty of contigencies, but lets not go their yet! i can get the clincial trial based peritonecomy done here as well, but its not worth doing unless i have been stable for 6 months and the liver mets and the lung met are gone. the vaccine targets lung mets, so hopefully it will be gone by friday hopefully or the pet in end of january.

    thanks for asking.

    hugs,
    Pete
  • Minnesotagirl
    Minnesotagirl Member Posts: 141

    some answers marie
    I take it you have left the clinic you originally went to in Germany.
    1. Did you leave because they could not offer you any further treatment?
    the clinic was hallwang, they are oncology based as well natural therapies, kind of the one stop shop. they organised most secondary therapies, they organised dendritic cell vaccine in duderstadt and prof vogel chemo embolisation in frankfurt.
    2. Did you have any positive results from their treatment as seen on CEA level or
    scan results? YES CEA WENT DOWN FROM 1770 to 39 IN 7 weeks, also saw some shrinkage between scans with prof vogel.

    I take it you have moved to another clinic in Dunderstaht.
    1. How did you determine this was the next place to try? its was mutual, but suggested by dr kopic the oncologist.
    2. How long do they think it will be to know if new treatment is effective?
    about 2 months to see if dendritic cell therapy is effective, its hard as i am doing another chemo embolisation on friday, with the pet directing the embolisation target. its not possible to isolate one factor, but i know for sure REMOVAB causes a massive CEA spike, so it certainly killed my tumour cells, i also felt like craap for a week after the first shot only 5mcg.

    I am sure that somewhere in your posts or blog you have given this info, but I tend to get lost with all the medical/scientific stuff. I know you recently wrote that CEA went down dramatically. Which treatment were you on when that occurred? The spike was caused by removab, the total fall over 7 weeks a combination of removab and 2 chemo embolisations and some very very low dose chemo ( targetting tumour stems cells not the tumour )

    You mentioned that you will have scans and blood work done at home over your Christmas holiday. Is there any reason to beleive that they are done differently or will have different results from what you have gotten in Germany?
    I am doing the tests at home so i can prove beyond any doubt how accurate and effective the german treatments are. Aussie doctors would say the scans and the test are fake or false. so I will do a round of pet and angio ct end of january ( for free )

    I am spending 3000 on the 8am pet so as to see how i am going. The german doctors complain about the quality of us and aussie pets and their reporting.

    i am back to duderstadt 3 feb for another 7 days therapy an another vaccine shot. and then off to prof vogel and my 4th chemo embolisation and down to hallwang for a for weeks r and r where i suspect i will get another round of removab. at some point i may be ned in process. thats the goal.

    i have plenty of contigencies, but lets not go their yet! i can get the clincial trial based peritonecomy done here as well, but its not worth doing unless i have been stable for 6 months and the liver mets and the lung met are gone. the vaccine targets lung mets, so hopefully it will be gone by friday hopefully or the pet in end of january.

    thanks for asking.

    hugs,
    Pete

    Thank you for clarifying
    Pete and Marie,

    I was thinking the same thing Marie...I to get lost in all the information you provide us Pete. I appreciate all the information Pete and your fortitude to make a difference for all of us. I continue to pray for you daily as I stated before.

    Wonderful news that your CEA went down. I hope the best...

    I wish you could spend time with your family. I can tell you are lonely fighting this battle ~ please remember we are all embracing you with loving thoughts and well wishes during these "new" procedures you are trying. Keep us in the loop and give cancer a kick in the butt!

    Pete...I have been reading and researching alot about essential oils. Francenscence (boswalia or something like that)is one of them...have you done anything with that oil?

    Blessings to you from Minnesota ~"Minnesotagirl
  • annalexandria
    annalexandria Member Posts: 2,571 Member

    17 million trainer tumour killers were released into pete, yippe
    Thats what happened yesterday, only cost 6500 euro, getting another shot early feb and then monthly until remission of death. if I am blessed to get to need then the injections will go out to bi monthly, them quartlerly etc etc , but with metatstatic you are never free.

    yep its alot of dollars, I am teaching the kids myself starting next feb, as we won't have money for a fancy college education, but whats dad worth ? heaps i say, wife agrees.

    so the german experiment continues with your favourite aussie volunteer.

    send a positive thought or prayer my way, I am lonely and its chilling here ( emotionally and literally ) looking over the precipice. Its along fall, and I am concerned about my direction. I am worried that I maybe heading down rather up. ie hell versus heaven when this current adventure is all over, whenever that is going to be.

    I could not get any prognostic estimate from dear doctor, just some make it into remission, so thats still my mission. I will be here for about about a year and yes, thats alot of euro's but possibly still cheaper than chemo shots.

    Info and details are here about the vaccine and the science
    http://immuntherapie.net/anfahrt.php

    we went over the most detailed analysis of my immune system in 5 minutes, i recorded it, its like gold to me. there is so much to helping our immune system to be done, not destroying it with chemo is foremost in my mind. but thats determined by my treatment selection and the opportunity my life insurance payoutt provides. If chemo was my only choice I would embrass it, or tcm or whatever my decision. self directed change is my new mantra.

    I really look at me in the vaccine, those little troublessome pete's have got alot of good work to do. if they try has hard as i do, the bigger version of themselves then my cure is assured. I hope and pray they are up to the task. Its my job to help them, so I am on
    http://livecelltreatment.com/http:/livecelltreatment.com/thymus-therapy

    now depending on the ratios in my immune system, different adjuvanant therapies could be used.

    I am quiet proud to be the first colorectal person on the planet to have the vaccine activated with a new peptide as well as newcastle virus disease.

    this is an expensive and seriously scientific and experimental approach with no guarantees but it offers the chance of cure thats so much more compelling for me personally than the current offering from conventionl medicine.

    I got to take a few risks if I want to stay in this game. the game of life that is.

    yesterday was a great day in the journey, those little trained killers are working in me 24 x 7 by 60 days until they die. I wished they could reproduce, but alas I got to get another shot, hence another weeks therapy early feb. maybe this is my xmas present early.

    got a pet scan on friday 8am and chemo embolization 1pm, the mri with contrast and the pet will dictate the targets of mets to be selectively poisoned, likely with avastin, irenotecan and mitomycinin. wish me luck, as I wish us all luck in whatever treatment we choose faith and confidence in what we have access to is the best approach.

    hugs,
    Pete

    ps another update from snowy germany.
    pps pm me if you are interested in the risky side of colorectal treatments, its lonely in germany. I know the best bars, hotels, massage joints, physios, restaurants and have topped
    220km/hour on the autobahn, so I can get around germany fast in my lovelly audi,

    PPS http://petertrayhurn.blogspot.de/2012/12/my-life-in-his-hands.html
    a picture of my vaccine and one of the newest immune system therapies delta gamma

    Good luck on Friday!
    And keep us posted. We may not all be able to understand your posts, but it's good to hear from you and hear how you're doing! AA
  • janie1
    janie1 Member Posts: 753 Member

    Good luck on Friday!
    And keep us posted. We may not all be able to understand your posts, but it's good to hear from you and hear how you're doing! AA

    Thanks Pete. And thanks,
    Thanks Pete. And thanks, Tony, for what you share.
    Pete, i had mitomycin put in the Hai pump. It took my cea down about one-third, which was steadily climbing fast. I see that you will be taking that. It knocked down the wbc's too however. But taking neupogen for
    that. Would you mind posting if your wbc's go down and do they use neupogen or neulasta in Germany??
    I had to increase neupogen which is another worry. I dont want to destroy my immune system to where i wont be able to try other things, or, be eligible for a trial or vaccine.

    Thanks, and always the best to you.
  • manwithnoname
    manwithnoname Member Posts: 402

    some answers marie
    I take it you have left the clinic you originally went to in Germany.
    1. Did you leave because they could not offer you any further treatment?
    the clinic was hallwang, they are oncology based as well natural therapies, kind of the one stop shop. they organised most secondary therapies, they organised dendritic cell vaccine in duderstadt and prof vogel chemo embolisation in frankfurt.
    2. Did you have any positive results from their treatment as seen on CEA level or
    scan results? YES CEA WENT DOWN FROM 1770 to 39 IN 7 weeks, also saw some shrinkage between scans with prof vogel.

    I take it you have moved to another clinic in Dunderstaht.
    1. How did you determine this was the next place to try? its was mutual, but suggested by dr kopic the oncologist.
    2. How long do they think it will be to know if new treatment is effective?
    about 2 months to see if dendritic cell therapy is effective, its hard as i am doing another chemo embolisation on friday, with the pet directing the embolisation target. its not possible to isolate one factor, but i know for sure REMOVAB causes a massive CEA spike, so it certainly killed my tumour cells, i also felt like craap for a week after the first shot only 5mcg.

    I am sure that somewhere in your posts or blog you have given this info, but I tend to get lost with all the medical/scientific stuff. I know you recently wrote that CEA went down dramatically. Which treatment were you on when that occurred? The spike was caused by removab, the total fall over 7 weeks a combination of removab and 2 chemo embolisations and some very very low dose chemo ( targetting tumour stems cells not the tumour )

    You mentioned that you will have scans and blood work done at home over your Christmas holiday. Is there any reason to beleive that they are done differently or will have different results from what you have gotten in Germany?
    I am doing the tests at home so i can prove beyond any doubt how accurate and effective the german treatments are. Aussie doctors would say the scans and the test are fake or false. so I will do a round of pet and angio ct end of january ( for free )

    I am spending 3000 on the 8am pet so as to see how i am going. The german doctors complain about the quality of us and aussie pets and their reporting.

    i am back to duderstadt 3 feb for another 7 days therapy an another vaccine shot. and then off to prof vogel and my 4th chemo embolisation and down to hallwang for a for weeks r and r where i suspect i will get another round of removab. at some point i may be ned in process. thats the goal.

    i have plenty of contigencies, but lets not go their yet! i can get the clincial trial based peritonecomy done here as well, but its not worth doing unless i have been stable for 6 months and the liver mets and the lung met are gone. the vaccine targets lung mets, so hopefully it will be gone by friday hopefully or the pet in end of january.

    thanks for asking.

    hugs,
    Pete

    KRN7000 (α-Galactosylceramide)
    Not a Honda but it is from Japan, the missing link to DC therapy?

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1389847/pdf/20042592.pdf

    http://jem.rupress.org/content/204/11/2641.full.pdf

    This has been used for humans with mets. and very good results.
  • lisa1001
    lisa1001 Member Posts: 1

    some answers marie
    I take it you have left the clinic you originally went to in Germany.
    1. Did you leave because they could not offer you any further treatment?
    the clinic was hallwang, they are oncology based as well natural therapies, kind of the one stop shop. they organised most secondary therapies, they organised dendritic cell vaccine in duderstadt and prof vogel chemo embolisation in frankfurt.
    2. Did you have any positive results from their treatment as seen on CEA level or
    scan results? YES CEA WENT DOWN FROM 1770 to 39 IN 7 weeks, also saw some shrinkage between scans with prof vogel.

    I take it you have moved to another clinic in Dunderstaht.
    1. How did you determine this was the next place to try? its was mutual, but suggested by dr kopic the oncologist.
    2. How long do they think it will be to know if new treatment is effective?
    about 2 months to see if dendritic cell therapy is effective, its hard as i am doing another chemo embolisation on friday, with the pet directing the embolisation target. its not possible to isolate one factor, but i know for sure REMOVAB causes a massive CEA spike, so it certainly killed my tumour cells, i also felt like craap for a week after the first shot only 5mcg.

    I am sure that somewhere in your posts or blog you have given this info, but I tend to get lost with all the medical/scientific stuff. I know you recently wrote that CEA went down dramatically. Which treatment were you on when that occurred? The spike was caused by removab, the total fall over 7 weeks a combination of removab and 2 chemo embolisations and some very very low dose chemo ( targetting tumour stems cells not the tumour )

    You mentioned that you will have scans and blood work done at home over your Christmas holiday. Is there any reason to beleive that they are done differently or will have different results from what you have gotten in Germany?
    I am doing the tests at home so i can prove beyond any doubt how accurate and effective the german treatments are. Aussie doctors would say the scans and the test are fake or false. so I will do a round of pet and angio ct end of january ( for free )

    I am spending 3000 on the 8am pet so as to see how i am going. The german doctors complain about the quality of us and aussie pets and their reporting.

    i am back to duderstadt 3 feb for another 7 days therapy an another vaccine shot. and then off to prof vogel and my 4th chemo embolisation and down to hallwang for a for weeks r and r where i suspect i will get another round of removab. at some point i may be ned in process. thats the goal.

    i have plenty of contigencies, but lets not go their yet! i can get the clincial trial based peritonecomy done here as well, but its not worth doing unless i have been stable for 6 months and the liver mets and the lung met are gone. the vaccine targets lung mets, so hopefully it will be gone by friday hopefully or the pet in end of january.

    thanks for asking.

    hugs,
    Pete

    Duderstadt

    Pete, How are you doing? I'm heading to Duderstadt in 2 weeks and just found your posts. Lisa 

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    lisa1001 said:

    Duderstadt

    Pete, How are you doing? I'm heading to Duderstadt in 2 weeks and just found your posts. Lisa 

    hi lisa, i am doing really well, thanks for asking.

    how wonderful my first csn friend, you will like nesselhut, stay in the hotel for lions . i love it. i am back around the 3rd march so our dates will overlap.

    pm me with your email, i am onto my 3rd vaccine, so far all good.

    welcome to the immunotherapy revolution, do you like qigong, massage and sauna. i have a few tricks that may have help the tumour disappear.

    hugs,

    pete

  • honkyvet
    honkyvet Member Posts: 2

    hi lisa, i am doing really well, thanks for asking.

    how wonderful my first csn friend, you will like nesselhut, stay in the hotel for lions . i love it. i am back around the 3rd march so our dates will overlap.

    pm me with your email, i am onto my 3rd vaccine, so far all good.

    welcome to the immunotherapy revolution, do you like qigong, massage and sauna. i have a few tricks that may have help the tumour disappear.

    hugs,

    pete

    Hi Pete - thanks for your sharing

    Hi Pete

    How has the last treatment been? Hope you are feeling fine and the results are good!

    Have been glossing through your posts about the dendritic cell treatment in dunderstadt, which is possibly on my travel agenda for this summer. It's helpful to learn about your procedures and meeting with Dr. Nesselhut.  My doctor says that it takes about a week to develop the dc vaccine, and then I will need 6 treatments in the first year, ideally 4 close together (but that may not be possible for me as I don't live in Europe). Have you heard of anyone getting this done on private health insurance? I know it's expensive - is it a fair estimate to say $60 K (US) for the year's treatments? Then there's the cost of staying in the hotel too. Is Dunderstadt a place for complementary therapies? 

    Looking forward to reading your news!

    Christine

  • honkyvet
    honkyvet Member Posts: 2
    lisa1001 said:

    Duderstadt

    Pete, How are you doing? I'm heading to Duderstadt in 2 weeks and just found your posts. Lisa 

    How was Duderstadt?

    Hi Lisa

    How was Duderstadt and your treatment? Hope it all went well,

    Christine

  • janie1
    janie1 Member Posts: 753 Member
    honkyvet said:

    Hi Pete - thanks for your sharing

    Hi Pete

    How has the last treatment been? Hope you are feeling fine and the results are good!

    Have been glossing through your posts about the dendritic cell treatment in dunderstadt, which is possibly on my travel agenda for this summer. It's helpful to learn about your procedures and meeting with Dr. Nesselhut.  My doctor says that it takes about a week to develop the dc vaccine, and then I will need 6 treatments in the first year, ideally 4 close together (but that may not be possible for me as I don't live in Europe). Have you heard of anyone getting this done on private health insurance? I know it's expensive - is it a fair estimate to say $60 K (US) for the year's treatments? Then there's the cost of staying in the hotel too. Is Dunderstadt a place for complementary therapies? 

    Looking forward to reading your news!

    Christine

    Hi Christine,
    If you live in

    Hi Christine,

    If you live in the U.S., some people make an appt. with Dr. Raymond Chang is NYC. He sends some patients to Germany to have blood drawn, etc, and to have a vaccine made. Then Dr. Chang is able to administer the vaccine at his office, therefore people do not have to make the numerous trips to Germany.
    Dr. Chang is very busy. Not really sure how many new patients he sees, but thought I would run that by you.
    I assume you know that vaccines ( or this one) can only be provided if there is not much tumor load.....don't know the specifics, but may be worth even an email to Dr. Chang to get an idea of what he does.

    Keep us posted, Ok?
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    janie1 said:

    Thanks Pete. And thanks,
    Thanks Pete. And thanks, Tony, for what you share.
    Pete, i had mitomycin put in the Hai pump. It took my cea down about one-third, which was steadily climbing fast. I see that you will be taking that. It knocked down the wbc's too however. But taking neupogen for
    that. Would you mind posting if your wbc's go down and do they use neupogen or neulasta in Germany??
    I had to increase neupogen which is another worry. I dont want to destroy my immune system to where i wont be able to try other things, or, be eligible for a trial or vaccine.

    Thanks, and always the best to you.

    thanks janie and lisa

    on no drugs for wbcs, just ahcc , psk  and my supps inc off labels.

    wbcs a touch down, but i just had removab, feeling great.

    lisa, see you overhere if you make it, maybe get a quote hallwang inc vogel if you need it.

    i love duderstadt, here for long term, leaving details to god.

    hugs,

    pete

  • sdp
    sdp Member Posts: 181

    thanks janie and lisa

    on no drugs for wbcs, just ahcc , psk  and my supps inc off labels.

    wbcs a touch down, but i just had removab, feeling great.

    lisa, see you overhere if you make it, maybe get a quote hallwang inc vogel if you need it.

    i love duderstadt, here for long term, leaving details to god.

    hugs,

    pete

    Germany ....
    Hi pete,

    I am having my pet scans tomorrow. The CEA and ca19.9 have increased to double the numbers while I was on maintenance chemo of erbitux. CEA now is 4.3 , after resection it was 1.6 . Ca19.9 is now 18.7 and after resection it was 8.6 or so.

    Had resection last year in august at univ of Regensburg hospital, Germany.it is about an hour from Munich.

    If the pet scans show something I am hopping in a plane and going back to Regensburg for further treatment. I hope it is limited to my liver. In that case I hope just an RFA would do the trick. Also, this time I do intend to evaluate further treatments to curtail recurrence and may just adopt one or few of your many treatment plans thay seem to have worked.

    Details of my condition and treatment so far are in my profile on this site. I was advised by my oncologist to do the blood test for cancer markers and the pet scan after a month from the last infusion of erbitux. I got the blood test done after two weeks and same showed an increasing trend in both the cancer markers. I discussed that yesterday with the doc and now he is on my case to do the pet scan asap. I am scheduled for the same 8 hours from now and I hope it all works out well. Definitely some activity due to the markers being elevated , but I hope it is limited to the liver and to small spots we can get with the RFA. After that I am motivated to walk a bit on your approach after reading about all that you are doing for yourself. I-m-press(ive)ed.!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    sdp said:

    Germany ....
    Hi pete,

    I am having my pet scans tomorrow. The CEA and ca19.9 have increased to double the numbers while I was on maintenance chemo of erbitux. CEA now is 4.3 , after resection it was 1.6 . Ca19.9 is now 18.7 and after resection it was 8.6 or so.

    Had resection last year in august at univ of Regensburg hospital, Germany.it is about an hour from Munich.

    If the pet scans show something I am hopping in a plane and going back to Regensburg for further treatment. I hope it is limited to my liver. In that case I hope just an RFA would do the trick. Also, this time I do intend to evaluate further treatments to curtail recurrence and may just adopt one or few of your many treatment plans thay seem to have worked.

    Details of my condition and treatment so far are in my profile on this site. I was advised by my oncologist to do the blood test for cancer markers and the pet scan after a month from the last infusion of erbitux. I got the blood test done after two weeks and same showed an increasing trend in both the cancer markers. I discussed that yesterday with the doc and now he is on my case to do the pet scan asap. I am scheduled for the same 8 hours from now and I hope it all works out well. Definitely some activity due to the markers being elevated , but I hope it is limited to the liver and to small spots we can get with the RFA. After that I am motivated to walk a bit on your approach after reading about all that you are doing for yourself. I-m-press(ive)ed.!

    spd my prayers friend

    if i were in your shoes, up up and away. suspect your pet is clear, but you still got a met.

    see my advice to ted or ren.

    but the earlier the better, you know why, today of all days you know the cost.

    2vogels and 3 removabs and where in the sauna relaxing. maybe get a quote hallwang if your serious, cometo germany and do the intrcellular malignacy test. why wait to grow another few million cells. nail the **** now, dont give it achance.

    hoping for rfa is just wishful, even then you got high ctcs likely.

    long term vaccines with minimal disease the best curative strategy i have found.

    consider rgc asap, and start targetted botanicals. read defeat cancer, chapter 3has rgc ccovered. the book explains many alternatives.

    if you got the resources do it all now, the longer you delay the poorer your prognosis. to try these therapies over 5 weeks, then you know.

    conventional also has great options.

    goodluck with whatever you decide. i am living hallwang 2 weeks a month for the next year.

    hugs,

    pete