I am torn between flaunting and sharing my success

24

Comments

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    John23 said:

    Jen2012 –

    Re:
    “John - how do you go about finding a good TCM doc?”

    It’s as difficult to locate a good surgeon, GP, or oncologist, as it is locating a decent TCM doc. There isn’t a license in the world that will prove any professional is the best that you can find; a license really doesn’t matter!

    You will have to study a bit, and do your best to understand what Traditional Chinese Medicine is all about, and try to understand what the initial exam should be like. The TCM exam is very, very different than western medicine’s exam. If you visit a TCM doc and the words and tests are familiar to what you’ve had with a typical western medicine physician’s visit, than move on…. A true practitioner of TCM does not care about “blood pressure”, or any western medicine named maladies; the TCM doc will examine your eyes, tongue, skin tone, fingernails, take the three pulses on each wrist….and listen to –your- description of what is ailing -you-.

    Once the TCM doc feels that the diagnosis is accurate, a prescription for acupuncture points, and/or herbal broths will be provided.

    The TCM doc will attempt to locate the real cause of your malady and resolve it. Any suffering from the real cause will disappear once the real problem is resolved.

    Western medicine simply removes the symptoms of the real problem, leaving you with the real problem festering, waiting to erupt at a later date with a vengeance.

    Finding a great TCM practitioner isn’t always that easy, since local and state legislation often stifles what is felt as “unproven science”, and limits the use of herbal broths, etc. I would not seek any TCM practitioner that is unable to provide fresh herbs to use in broths, or is unable to use the herbal part of the science of TCM. I would travel to a state that allows full use of all of TCM’s herbs, etc., rather than be so limited.

    Read over at my “blog”, read some of the links, and let me know if any of it has helped.. If not, I’ll try to help you via this personal messaging system, OK?

    By the way, all three oncologists that have been assigned to my case between 2006 and 2011, had all said that they would not allow the use of any “herbs” during their chemo treatments. They all felt that the herbs might offset the value of the chemicals (chemo). The all were adamant that nothing is more powerful than the chemo for fighting cancer, yet something as simple as an herb might offset those same powerful drugs. So you are probably correct with your assumption that asking your oncologist won’t result in positive replies.

    However……. Many oncologists worldwide are incorporating the use of TCM herbs into their cancer regime to stave off the side effects of chemo…. you may or may not be surprised with the answer you’ll get!

    Regardless of the path taken, it’s best to know as much as you possibly can about the entire process prior to beginning any treatment.

    Best wishes,

    John

    "fresh"

    John, when you say "fresh herbs", do you mean recently picked off the plant and still green, or recently dried and obtained?

  • John23
    John23 Member Posts: 2,122 Member
    tanstaafl said:

    "fresh"

    John, when you say "fresh herbs", do you mean recently picked off the plant and still green, or recently dried and obtained?

    Tans…

     

    “Fresh” as in “raw”… (I had just washed my hands and couldn’t do a thing with them.)

     

    I can’t edit that post, but thanks for the catch! I should have typed “raw herbs”!

     

    There is a growing number of individuals that claim to practice TCM, but do not write prescriptions for their patients and instead are using what is called “Chinese Patent Medicine”.

     

    The Chinese Patent medicine is pre-formulated remedies in tiny pill form (patented by the Chinese Government), and sold by the bottle “over the counter” as a generic maintenance script.

     

    Using very high dosages of the pills can effect a change in one’s health, but I have never much success using any of it, for any malady.

     

    The true TCM practitioner formulates an herbal broth for the specific patient’s needs, and what script is good for me, may be totally wrong for you! My malady might be caused by a “liver yin deficiency”, while yours with symptoms similar to mine, might be due to a deficiency in a totally different organ. TCM is a very basic science, but by no means is it’s practice simple; it can be quite complicated.

     

    It’s important to quiz the TCM practitioner regarding the treatment options, and if he/she uses raw herbs for prescriptions. I would not use one that does not have raw herbs on hand, unless the prescription is to be filled at an herbal pharmacy (yes, they do that!).

     

    Anyone seriously interested in trying TCM should make certain that raw herbal prescriptions are one of the options offered. If it isn’t, go elsewhere!

     

    Best wishes for you and yours,

     

    John

  • renw
    renw Member Posts: 282 Member
    Pete, with you germany

    Pete, with your germany treatment, I am sure you will find that even at the German clinics you are the exception and not the rule. I know people who left german clinics at much worse shape than they arrived. Still you did something right. You may just have a very specfic mutation that responded very well to Removab, or its something else you did in combination with your German therapies, like GCMAF or even qigong. Its great that you are sharing, but really need more people to reproduce your success to be able to call it a crc cure. I for one am going to give it a go as I too believe that in advanced mcrc Chemo is a dead end.

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    a sincere thanks

    dear friends,

    I have read and considered all your replies and pm's individually. they are all important to me. thanks again.

    I have been documenting in detail by video all the procedures and consults and as much of the experience as possible and practical.

    it will be on my blog.

    I will post brief summaries here on csn without so much of the personal stuff and the personal stuff for my blog.

    also none of the money. i will upload the reciepts and detailed invoices so you can see what to expect.

    i have to focus all my energy on my remission, and co-ordinating the vast number of tests and therapies i am currently undertaking.

    so in summary on csn I will provide a brief summary of the therapies without costs and full details on the blog with video consults.

    i am either a genetic fluke as ren and ted suggest or i have stubbled on a curative set of therapies for colorectal stage 4. I am putting all my effort and time into the video blog

    capturing real time all the treatments and consults. documenting the entire holistic set of therapies from physio therapy to vogel and saunas in the middle.

    either way the detailed video of staying ned, will document my one off medical fluke, which will still be a great story.

    if its a workable curative strategy extracting the best results out of uncooperative german clinic's well it will simply clearly show precisely what i did, how, what, why and when.

    i have become way to extreme for csn, i have the uptmost respect, care and empathy for all my friends here.

    my biggest hugs from germany.

    its 2pm, i am so tired, the jet lag is extreme, off for a nap. the irenotecan, mitomycin and avastin are working away locally. the cancer cells are dieing as I type, its magic,

    its a miracle. my white blood cells are being trained in another lab, getting prepared for dual delivery subcutaneous for the liver and peritoneum and intravenous for any potential lung mets.

    the treatment strategy is falling into place, and i can see this next phase lasting a year with monthly vaccine shots, dr vogel and hallwang clinic all combined.

    godbless us all and a sincere thanks.

    hugs,

    Pete

  • KathiM
    KathiM Member Posts: 8,028 Member
    Darling Pete...

    If I had a system that worked for me...I would shout it from the rooftops!!!  Clinical trials are in place so that new things can be offered, and possibilities tested...and TCM is just another example, as well, of the need to find SOMETHING that can work against this beast for everyone!!!

    The common goal is to beat this monster into submission!!!

    I can't offer what was my success...nothing was done out of the ordinary, but everything, with both cancers worked.  I feel as if I always need to use caution when I share some piece of good news here, with so many souls struggling...but share it I do!  I put myself in the place I was when I had no future, according to the doctors.

     I LOVED to hear of those that beat the monster!!!  Not necessarily to use that treatment, but just to use it to feel better about the thought that someone IS emerging from this nightmare, and going on to live!!!

    Hugs, my dearest...I'm so proud to call you 'friend'!

    Kathi

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

    Darling Pete...

    If I had a system that worked for me...I would shout it from the rooftops!!!  Clinical trials are in place so that new things can be offered, and possibilities tested...and TCM is just another example, as well, of the need to find SOMETHING that can work against this beast for everyone!!!

    The common goal is to beat this monster into submission!!!

    I can't offer what was my success...nothing was done out of the ordinary, but everything, with both cancers worked.  I feel as if I always need to use caution when I share some piece of good news here, with so many souls struggling...but share it I do!  I put myself in the place I was when I had no future, according to the doctors.

     I LOVED to hear of those that beat the monster!!!  Not necessarily to use that treatment, but just to use it to feel better about the thought that someone IS emerging from this nightmare, and going on to live!!!

    Hugs, my dearest...I'm so proud to call you 'friend'!

    Kathi

    sincere thanks kathi

    Kathi,

    Your post means so much. as well as your story, i am so glad you shared it.

    the volume of suffering and anguish here is palpable to me, I think to some extent I wanted to really offset the suffering by sharing my joy, my hope for myself, for us all. my humour, my personal stuff I hoped would give a context to my effort to survive. as my example of its cool to be a fool, to make mistakes and learn from them and learn real fast. 

    some here have found my open sharing too much, in respect for them I can move my sharing to my blog. I am compelled by some deep desire to journalise this very intense phase of my existence, I know its good for my soul and mind to process all these emotions, but doing in the right and appropriate way is important.

    I actually believe that this board should be a place for intimate sharing, that getting out the deepest feelings essential to healing emotionally and physically. again even that philosphy is to challenging for most here. our board will stay a place of "misery" as another colorectal friend in sydney describes us. i too see the suffering here, we all do, when we get a break from our own challenges.

    you see I believe hope cures, faith cures. just my opinions, i cannot divorce my extreme emotional intensity for survival and the medical procedures. could my extreme desire to live, to dedicate my every waking moment of my existence to beating this illness be itself a factor of my immune systems response. i have abandoned my business, my family even to focus on my survival. I have no regrets, as when I beat this illness, I can cherry pick the healthy pieces of my old life. 

    we have never here really touched on the role of pysco oncology. i take heart that as I retreat from this board to focus my energies on my survival and update my blog, I will devout myself to assisting anyone who contacts me with regard to pete's plan via pm.

    ultimately I have clearly shared a strategy thats worked so far for one, and I have lots of work to do. my survival is in my hands, not my doctors and is according to gods will.

    this board is a much better place with regard to holistic views than it was when i started, so many are now open minded about holistic principles and cancer. which is still at odds with conventional medicine.

    we each have to make our own path in life, through this illness as well as we can. I have to apply for a ong term medical visa or investigate dual citizenship using my dutch heritage.

    hugs,

    Pete

    ps I remember many times here when the mention of diet, exercise and supplements and you would get torn to pieces here. I have seen that it is possible to teach old dogs new tricks, some old dogs anyway.

     

     

  • tommycat
    tommycat Member Posts: 790 Member

    sincere thanks kathi

    Kathi,

    Your post means so much. as well as your story, i am so glad you shared it.

    the volume of suffering and anguish here is palpable to me, I think to some extent I wanted to really offset the suffering by sharing my joy, my hope for myself, for us all. my humour, my personal stuff I hoped would give a context to my effort to survive. as my example of its cool to be a fool, to make mistakes and learn from them and learn real fast. 

    some here have found my open sharing too much, in respect for them I can move my sharing to my blog. I am compelled by some deep desire to journalise this very intense phase of my existence, I know its good for my soul and mind to process all these emotions, but doing in the right and appropriate way is important.

    I actually believe that this board should be a place for intimate sharing, that getting out the deepest feelings essential to healing emotionally and physically. again even that philosphy is to challenging for most here. our board will stay a place of "misery" as another colorectal friend in sydney describes us. i too see the suffering here, we all do, when we get a break from our own challenges.

    you see I believe hope cures, faith cures. just my opinions, i cannot divorce my extreme emotional intensity for survival and the medical procedures. could my extreme desire to live, to dedicate my every waking moment of my existence to beating this illness be itself a factor of my immune systems response. i have abandoned my business, my family even to focus on my survival. I have no regrets, as when I beat this illness, I can cherry pick the healthy pieces of my old life. 

    we have never here really touched on the role of pysco oncology. i take heart that as I retreat from this board to focus my energies on my survival and update my blog, I will devout myself to assisting anyone who contacts me with regard to pete's plan via pm.

    ultimately I have clearly shared a strategy thats worked so far for one, and I have lots of work to do. my survival is in my hands, not my doctors and is according to gods will.

    this board is a much better place with regard to holistic views than it was when i started, so many are now open minded about holistic principles and cancer. which is still at odds with conventional medicine.

    we each have to make our own path in life, through this illness as well as we can. I have to apply for a ong term medical visa or investigate dual citizenship using my dutch heritage.

    hugs,

    Pete

    ps I remember many times here when the mention of diet, exercise and supplements and you would get torn to pieces here. I have seen that it is possible to teach old dogs new tricks, some old dogs anyway.

     

     

    HI Pete

    I applaud you for your drive and persisitence in finding a cure for cancer. Your method would be difficult to follow as there have been so many jigsaw pieces thrown on the floor. That doesn't mean that you haven't stumbled upon something that works for you with, what sounds like, a dash of chemotherapy thrown in.

    Good news is always welcome.

    Keep on keepin' on!

    Tommycat

  • tachilders
    tachilders Member Posts: 313

    sincere thanks kathi

    Kathi,

    Your post means so much. as well as your story, i am so glad you shared it.

    the volume of suffering and anguish here is palpable to me, I think to some extent I wanted to really offset the suffering by sharing my joy, my hope for myself, for us all. my humour, my personal stuff I hoped would give a context to my effort to survive. as my example of its cool to be a fool, to make mistakes and learn from them and learn real fast. 

    some here have found my open sharing too much, in respect for them I can move my sharing to my blog. I am compelled by some deep desire to journalise this very intense phase of my existence, I know its good for my soul and mind to process all these emotions, but doing in the right and appropriate way is important.

    I actually believe that this board should be a place for intimate sharing, that getting out the deepest feelings essential to healing emotionally and physically. again even that philosphy is to challenging for most here. our board will stay a place of "misery" as another colorectal friend in sydney describes us. i too see the suffering here, we all do, when we get a break from our own challenges.

    you see I believe hope cures, faith cures. just my opinions, i cannot divorce my extreme emotional intensity for survival and the medical procedures. could my extreme desire to live, to dedicate my every waking moment of my existence to beating this illness be itself a factor of my immune systems response. i have abandoned my business, my family even to focus on my survival. I have no regrets, as when I beat this illness, I can cherry pick the healthy pieces of my old life. 

    we have never here really touched on the role of pysco oncology. i take heart that as I retreat from this board to focus my energies on my survival and update my blog, I will devout myself to assisting anyone who contacts me with regard to pete's plan via pm.

    ultimately I have clearly shared a strategy thats worked so far for one, and I have lots of work to do. my survival is in my hands, not my doctors and is according to gods will.

    this board is a much better place with regard to holistic views than it was when i started, so many are now open minded about holistic principles and cancer. which is still at odds with conventional medicine.

    we each have to make our own path in life, through this illness as well as we can. I have to apply for a ong term medical visa or investigate dual citizenship using my dutch heritage.

    hugs,

    Pete

    ps I remember many times here when the mention of diet, exercise and supplements and you would get torn to pieces here. I have seen that it is possible to teach old dogs new tricks, some old dogs anyway.

     

     

    I'm following your progress

    I'm following your progress closely, and have contacted Hallwang and am preparing to send them my medical records for review.  Biggest obstacle will likely be getting my life insurance to pay out early....

    Tedd

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    I'm following your progress

    I'm following your progress closely, and have contacted Hallwang and am preparing to send them my medical records for review.  Biggest obstacle will likely be getting my life insurance to pay out early....

    Tedd

    thanks tedd

    I hope you get it, and goodluck, I will be here if you do make it here. you can count on my full support, as can any csn friend.

    I told my oncologist that I was refusing all chemo, that i was considering necking myself in 364 days.

    he had no problem writing the 12 months to live estimate based on my statements, it worked simply and effectively for me.

    it was not that easy tans, see!!!!!!!!!!!! but desperate times demand desperate measures.

    goodluck tedd, we got to do, what we got to do. go for it tedd. my might see ren here as well.

    as people get closer to coming, check my blog, already I am streamlining our ways of getting the best out of these clinics.

    they are not perfect by any means. I will draft up a summary on my blog as a therapy template.

    tedd/ren your homework, I will post my immune system profile blood tests. you need to find equivalent tests and you can start tuning your immune system based on your results. by all means ask your oncologist, go look for an immune specialist. I tried and found no one in sydney , I doubt you guys will either.

    if you are trying to come, start training and preparing now. I don't want removab to kill either of you, it almost killed me! its intense, you have been warned. I suspect thats why its not really got wider usage. hallwangs clinical experience essential, thats what the 455 euro per day covers.

    ren, you will see a doctor each and everyday and a nurse every 30 minutes when on removab for as long as it takes.

    hugs,

    Pete

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    thanks tedd

    I hope you get it, and goodluck, I will be here if you do make it here. you can count on my full support, as can any csn friend.

    I told my oncologist that I was refusing all chemo, that i was considering necking myself in 364 days.

    he had no problem writing the 12 months to live estimate based on my statements, it worked simply and effectively for me.

    it was not that easy tans, see!!!!!!!!!!!! but desperate times demand desperate measures.

    goodluck tedd, we got to do, what we got to do. go for it tedd. my might see ren here as well.

    as people get closer to coming, check my blog, already I am streamlining our ways of getting the best out of these clinics.

    they are not perfect by any means. I will draft up a summary on my blog as a therapy template.

    tedd/ren your homework, I will post my immune system profile blood tests. you need to find equivalent tests and you can start tuning your immune system based on your results. by all means ask your oncologist, go look for an immune specialist. I tried and found no one in sydney , I doubt you guys will either.

    if you are trying to come, start training and preparing now. I don't want removab to kill either of you, it almost killed me! its intense, you have been warned. I suspect thats why its not really got wider usage. hallwangs clinical experience essential, thats what the 455 euro per day covers.

    ren, you will see a doctor each and everyday and a nurse every 30 minutes when on removab for as long as it takes.

    hugs,

    Pete

    Pete I love your attitude and
    Pete I love your attitude and drive, and thanks for sharing what is working for you. One question comes to mind is with the infusions of chemo. directly to your tumors, how do they do this?? Is there a C.T. machine or something that guides them to the tumor, what if the tumor is in a spot they can't easily get to?? I'm thinking with systemic chemo. it gets to spots that are not showing up on scans, we all know that's a possibility, sometimes things are so small they're not showing up yet?? Is the expectation that the Removab does it's job on those little spots. Will you continue to get the chemo. shots once a month, although I suppose if the scans don't show anything they won't have a target, so will the continued plan be the Removab alone once a month?? Sorry for all the quesions. Keep up the great posts!!! So happy this is working for you.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    smokeyjoe said:

    Pete I love your attitude and
    Pete I love your attitude and drive, and thanks for sharing what is working for you. One question comes to mind is with the infusions of chemo. directly to your tumors, how do they do this?? Is there a C.T. machine or something that guides them to the tumor, what if the tumor is in a spot they can't easily get to?? I'm thinking with systemic chemo. it gets to spots that are not showing up on scans, we all know that's a possibility, sometimes things are so small they're not showing up yet?? Is the expectation that the Removab does it's job on those little spots. Will you continue to get the chemo. shots once a month, although I suppose if the scans don't show anything they won't have a target, so will the continued plan be the Removab alone once a month?? Sorry for all the quesions. Keep up the great posts!!! So happy this is working for you.

    german cea 23 down from 47 8 weeks ago

    I doubt its tumour growth based on vogels mri assessment yesterday, the german cea was done on my day of arrival before any therapies to establish a baseline.

    I'll do the cea 2 days after the vaccine injection as well, so I will basically be doing it almost each fortnight. over the next few months, we will be looking for a spike of some size post the vaccine shot. so maybe the post vaccine ( 2 days after ) will indicate if vaccine design effacious. time will tell.

    so my cea in sydney is 3.2, in germany its 23. different labs, different days .

    importnly german cea base in 5 and the sydney base is 2.6

    regardless i have activr tumour cells giving off detectable level of proteins.

    the plan for the next six months in am writing up on my blog.

    vogel wants to see me each month, a vaccine each month and hallwang each month for a few weeks.

    note the synergy between off label direct inject avastin and local immune response suppression re treg cells per nesslehut.

    i see doctor nesslehut tomorrow for the big consult, as an aside I am asking him directly to provide one free sponsored vaccine program for 6 vaccine shots,if I generate 10 colorectal referals.

    so effectively we will all provide 10% of someone's treatment for the vaccine. i am in the good books with these doctors and clinics. i am leveraging that to our benefit, if it works 

    i will let you know. i will try this out on vogel and on hallwang and herzog. any support for disadvantaged welcome. it would be a good demonstration of the clinics morals.

    smokey dear watch the video, give me a few hours and it will be online, a picture is worth a 1000 words. whats a video worth ???????????????

    i recorded tuesdays vogel chemo embolisation.

     

    spot on about removab doing little spots. ha ha!.

    they still have a target somehow vogel did 50 50 into lungs and liver. i did not get precious details, i trust the guy.

    he must do 5 to 10 embolisations a day 5 days a week, he training a new doctor. i view this as insurance.

    i will keep these agressive therapies going as long as I can afford to or until cea and 19-9 = ZERO and scans clear.

    one day vogel will say no more. i am guided by his clinical experience. I am side effect free, feel great and have irenotecan locked away working on the liver mets and the questionable lung mass that only had 1.1 suv and was unchanged, from 6 months earlier. vogel said the lung mass was also not cancer.

     

    what hallwang want to do with removab, well I suspect they will hit me hard again.

    so basically 2 weeks duderstadt for vaccine, then 2 weeks hallwang and vogel in between enroute.

    keep on going until crystal clear.

    I am still looking at more advanced macropage tests that can detect malgnancy  to around a few malignant cells. see my blog tarlivan and the tktl1 protein marker, that was used for planning and monitoring the ketogenic diet. now i think it will be interesting, as may well be nagalase.

    a few big tests results are due in soon, they are the rgcc updated molecular profile and ctc counts and the cfs panel that measures viral load and the penetration of the virus into the cell nucleus. now I had that tested and treated a few months ago at hallwang, the retesting worthwhile per the hallwang doctors guiding my therapy.

    its really interesting science, and I wish i understood more of its basics.

    hugs,

    Pete

     

  • manwithnoname
    manwithnoname Member Posts: 402

    german cea 23 down from 47 8 weeks ago

    I doubt its tumour growth based on vogels mri assessment yesterday, the german cea was done on my day of arrival before any therapies to establish a baseline.

    I'll do the cea 2 days after the vaccine injection as well, so I will basically be doing it almost each fortnight. over the next few months, we will be looking for a spike of some size post the vaccine shot. so maybe the post vaccine ( 2 days after ) will indicate if vaccine design effacious. time will tell.

    so my cea in sydney is 3.2, in germany its 23. different labs, different days .

    importnly german cea base in 5 and the sydney base is 2.6

    regardless i have activr tumour cells giving off detectable level of proteins.

    the plan for the next six months in am writing up on my blog.

    vogel wants to see me each month, a vaccine each month and hallwang each month for a few weeks.

    note the synergy between off label direct inject avastin and local immune response suppression re treg cells per nesslehut.

    i see doctor nesslehut tomorrow for the big consult, as an aside I am asking him directly to provide one free sponsored vaccine program for 6 vaccine shots,if I generate 10 colorectal referals.

    so effectively we will all provide 10% of someone's treatment for the vaccine. i am in the good books with these doctors and clinics. i am leveraging that to our benefit, if it works 

    i will let you know. i will try this out on vogel and on hallwang and herzog. any support for disadvantaged welcome. it would be a good demonstration of the clinics morals.

    smokey dear watch the video, give me a few hours and it will be online, a picture is worth a 1000 words. whats a video worth ???????????????

    i recorded tuesdays vogel chemo embolisation.

     

    spot on about removab doing little spots. ha ha!.

    they still have a target somehow vogel did 50 50 into lungs and liver. i did not get precious details, i trust the guy.

    he must do 5 to 10 embolisations a day 5 days a week, he training a new doctor. i view this as insurance.

    i will keep these agressive therapies going as long as I can afford to or until cea and 19-9 = ZERO and scans clear.

    one day vogel will say no more. i am guided by his clinical experience. I am side effect free, feel great and have irenotecan locked away working on the liver mets and the questionable lung mass that only had 1.1 suv and was unchanged, from 6 months earlier. vogel said the lung mass was also not cancer.

     

    what hallwang want to do with removab, well I suspect they will hit me hard again.

    so basically 2 weeks duderstadt for vaccine, then 2 weeks hallwang and vogel in between enroute.

    keep on going until crystal clear.

    I am still looking at more advanced macropage tests that can detect malgnancy  to around a few malignant cells. see my blog tarlivan and the tktl1 protein marker, that was used for planning and monitoring the ketogenic diet. now i think it will be interesting, as may well be nagalase.

    a few big tests results are due in soon, they are the rgcc updated molecular profile and ctc counts and the cfs panel that measures viral load and the penetration of the virus into the cell nucleus. now I had that tested and treated a few months ago at hallwang, the retesting worthwhile per the hallwang doctors guiding my therapy.

    its really interesting science, and I wish i understood more of its basics.

    hugs,

    Pete

     

    Hi Pete

    What are you doing to surpress T-reg cells? our son had his first DC yesterday, 4 injections at lymph nodes + GM-csf, do you get an adjuvant too?

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Hi Pete

    What are you doing to surpress T-reg cells? our son had his first DC yesterday, 4 injections at lymph nodes + GM-csf, do you get an adjuvant too?

    fingers crossed for your son

    avastin per nesslehut.

    intramuscular thymus extract as a general immune system modulator. twice weekly.

    thats interesting the DC injected lymph nodes, i was under the impression the DC float free for a few weeks and then go retire in the lymph nodes.

    did they train the vaccine with NDV ?

    I met Darren last night herzog clinic, he has a gbm, he was very interested in nesslehut and dc and ndv.

    so based on http://en.wikipedia.org/wiki/Granulocyte_macrophage_colony-stimulating_factor

    i assume we are talking about the same animal   GM-CSF = GCMAF aka maf314 probiotic yogurt.

    you know , nesslehut and dagmar are fascinated by my response, tomorrows consult with doc N really really exciting.

    i will ask him again about my maf314 probiotic yogurt, and tuning my immune system, i need to post my latest immune results.

    http://gcmaf.timsmithmd.com/book/chapter/43/  from my blog a good story

    hugs,

    Pete

     

     

  • manwithnoname
    manwithnoname Member Posts: 402

    fingers crossed for your son

    avastin per nesslehut.

    intramuscular thymus extract as a general immune system modulator. twice weekly.

    thats interesting the DC injected lymph nodes, i was under the impression the DC float free for a few weeks and then go retire in the lymph nodes.

    did they train the vaccine with NDV ?

    I met Darren last night herzog clinic, he has a gbm, he was very interested in nesslehut and dc and ndv.

    so based on http://en.wikipedia.org/wiki/Granulocyte_macrophage_colony-stimulating_factor

    i assume we are talking about the same animal   GM-CSF = GCMAF aka maf314 probiotic yogurt.

    you know , nesslehut and dagmar are fascinated by my response, tomorrows consult with doc N really really exciting.

    i will ask him again about my maf314 probiotic yogurt, and tuning my immune system, i need to post my latest immune results.

    http://gcmaf.timsmithmd.com/book/chapter/43/  from my blog a good story

    hugs,

    Pete

     

     

    Thanks Pete

    But GM-csf is NOT GC-maf it's a completley different thing, our son got MY dendritic cells cultured with his tumour, its called semi-allogenic.

    Avastin targets VEGF are you doing anything against T-regulatory cells? if not you should be.

    After we finish the DC vaccines he gets tumour lysate + NDV + adjuvants every 2 weeks.

    Also giving him L-cysteine and L-arginine to target MDSC's and started with GC-maf.

    Next week Thalidomide.

    I don't know how your Docs are about suggestions but our Professor is going along with everything I say, he realised I probably know more than he does, after all I am obsessed. Sealed

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    fingers crossed for your son

    avastin per nesslehut.

    intramuscular thymus extract as a general immune system modulator. twice weekly.

    thats interesting the DC injected lymph nodes, i was under the impression the DC float free for a few weeks and then go retire in the lymph nodes.

    did they train the vaccine with NDV ?

    I met Darren last night herzog clinic, he has a gbm, he was very interested in nesslehut and dc and ndv.

    so based on http://en.wikipedia.org/wiki/Granulocyte_macrophage_colony-stimulating_factor

    i assume we are talking about the same animal   GM-CSF = GCMAF aka maf314 probiotic yogurt.

    you know , nesslehut and dagmar are fascinated by my response, tomorrows consult with doc N really really exciting.

    i will ask him again about my maf314 probiotic yogurt, and tuning my immune system, i need to post my latest immune results.

    http://gcmaf.timsmithmd.com/book/chapter/43/  from my blog a good story

    hugs,

    Pete

     

     

    MDSC

    Geez Tony, the acronyms lost me there for minute.  <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2805057/">MDSC</a>  myeloid derive suppressor cells.  

    <a href="http://cdn.intechopen.com/pdfs/34381/InTech-Myeloid_derived_suppressor_cells_subsets_expansion_and_role_in_cancer_progression.pdf">a whole chapter</a>

    Thanks, I notice the iNOS (inducible Nitric Oxide synthase) is involved, got a positive marker there, too.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member

    german cea 23 down from 47 8 weeks ago

    I doubt its tumour growth based on vogels mri assessment yesterday, the german cea was done on my day of arrival before any therapies to establish a baseline.

    I'll do the cea 2 days after the vaccine injection as well, so I will basically be doing it almost each fortnight. over the next few months, we will be looking for a spike of some size post the vaccine shot. so maybe the post vaccine ( 2 days after ) will indicate if vaccine design effacious. time will tell.

    so my cea in sydney is 3.2, in germany its 23. different labs, different days .

    importnly german cea base in 5 and the sydney base is 2.6

    regardless i have activr tumour cells giving off detectable level of proteins.

    the plan for the next six months in am writing up on my blog.

    vogel wants to see me each month, a vaccine each month and hallwang each month for a few weeks.

    note the synergy between off label direct inject avastin and local immune response suppression re treg cells per nesslehut.

    i see doctor nesslehut tomorrow for the big consult, as an aside I am asking him directly to provide one free sponsored vaccine program for 6 vaccine shots,if I generate 10 colorectal referals.

    so effectively we will all provide 10% of someone's treatment for the vaccine. i am in the good books with these doctors and clinics. i am leveraging that to our benefit, if it works 

    i will let you know. i will try this out on vogel and on hallwang and herzog. any support for disadvantaged welcome. it would be a good demonstration of the clinics morals.

    smokey dear watch the video, give me a few hours and it will be online, a picture is worth a 1000 words. whats a video worth ???????????????

    i recorded tuesdays vogel chemo embolisation.

     

    spot on about removab doing little spots. ha ha!.

    they still have a target somehow vogel did 50 50 into lungs and liver. i did not get precious details, i trust the guy.

    he must do 5 to 10 embolisations a day 5 days a week, he training a new doctor. i view this as insurance.

    i will keep these agressive therapies going as long as I can afford to or until cea and 19-9 = ZERO and scans clear.

    one day vogel will say no more. i am guided by his clinical experience. I am side effect free, feel great and have irenotecan locked away working on the liver mets and the questionable lung mass that only had 1.1 suv and was unchanged, from 6 months earlier. vogel said the lung mass was also not cancer.

     

    what hallwang want to do with removab, well I suspect they will hit me hard again.

    so basically 2 weeks duderstadt for vaccine, then 2 weeks hallwang and vogel in between enroute.

    keep on going until crystal clear.

    I am still looking at more advanced macropage tests that can detect malgnancy  to around a few malignant cells. see my blog tarlivan and the tktl1 protein marker, that was used for planning and monitoring the ketogenic diet. now i think it will be interesting, as may well be nagalase.

    a few big tests results are due in soon, they are the rgcc updated molecular profile and ctc counts and the cfs panel that measures viral load and the penetration of the virus into the cell nucleus. now I had that tested and treated a few months ago at hallwang, the retesting worthwhile per the hallwang doctors guiding my therapy.

    its really interesting science, and I wish i understood more of its basics.

    hugs,

    Pete

     

    Big difference

    Dear Pete (or anyone else who may know),

    Is there a differnt scale or what that would cause such a big difference in the CEA results between what you had done in Sydney and Germany (so my cea in sydney is 3.2, in germany its 23. different labs, different days).

    Marie who loves kitties

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Big difference

    Dear Pete (or anyone else who may know),

    Is there a differnt scale or what that would cause such a big difference in the CEA results between what you had done in Sydney and Germany (so my cea in sydney is 3.2, in germany its 23. different labs, different days).

    Marie who loves kitties

    dear marie

    its got a different range, i will check with doctor tomorrow. I had this type of discrepancy in sydney as well between labs, where one labs results were 4 times that of the other.

    the good news is all the scans are clear, the implication is I have active disease to manage.

    I am glad I am back in germany, trying these therapies. still hoping and praying. it highlights the challenges of being cared for by different medical systems, different countries, etc etc etc.

    the other good news is the rest of my bloods are excellent.

    another good piece of info i got, was that my ca199 is tracking the same rate of decline as CEA. thanks tans and craig for bringing that marker to my awareness. i have had my second ca199 measurement.

    hugs,

    Pete

  • k44454445
    k44454445 Member Posts: 494
    Pete

    i appreciate your posts. even tho i will not be able to go to germany, i love hearing about your experiences there. keep on posting! glad to hear you are better!!!

    hugs

    judy

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Thanks Pete

    But GM-csf is NOT GC-maf it's a completley different thing, our son got MY dendritic cells cultured with his tumour, its called semi-allogenic.

    Avastin targets VEGF are you doing anything against T-regulatory cells? if not you should be.

    After we finish the DC vaccines he gets tumour lysate + NDV + adjuvants every 2 weeks.

    Also giving him L-cysteine and L-arginine to target MDSC's and started with GC-maf.

    Next week Thalidomide.

    I don't know how your Docs are about suggestions but our Professor is going along with everything I say, he realised I probably know more than he does, after all I am obsessed. Sealed

     

    dear tony, obsessed, you really think we are ?

    Dear Tony and all,

    checkout the AHCC book on my blog at the bottom of this post.

    Ok maybe obsessed, or just focused.

    You found me all those months ago and gc maf, now look at what we are both up too. I am so grateful.

    We are our own clinical trials.

    We are sharing our results and knowledge out of the best worlds leading vaccine centres. we are making history.

    What I am doing feels particularly pedestrian. Intensely pedestrian.

    what you are doing for your son, I find inspiring beyond belief. When I have a break in treatment and am clear, I will go to the holy land to thank God.

    I see a nice irony, two fathers. one saving his son, the other saving himself for his son. Your advice, support and friendship essential.

    I will then try and visit you and get some lego. I have read tans link re MDSC, emailed it to nesslehut to discuss in todays consult.

    this post and the last few hours readings has been an epithany. all the pieces of my jigsaw just fell into place after reading

    "Myeloid Derived Suppressor Cells: Subsets, 

    Expansion, and Role in Cancer Progression"  thankyou tans, its the best reference. i needed the few missing links, that reference has helped me put the peices of my jigsaw puzzle together i think. its going to be a great consult with doctor N today.

    the role of food, of the aminos, inflamation. everything about diet, exercise, meditation and lifestyle just got verified.

    we are on the cutting edge of science my dearest friend. one day we wll actually have to talk on the phone. maybe video skype.

    its about time you me and tans started having informal discussions about research going forward. mind you sharing this stuff in public, must surely give some hope to our friends.

    I was so pisssed i could not get a clear answer out of dagmar and nesslehut re gcmaf(injection or probiotic yogurt) with vaccine shot 1 

    can you imagine having to trust your gut and go with these crazy odd ball therapies.

    tomorrow they said they would test my yogurt in the lab. that in itself is a dream come true.

    http://www.nature.com/nrc/journal/v12/n4/fig_tab/nrc3237_F3.html  this link explains nesslehut preferance for direct inject avastin. lowering vegf and its angiogenic benefits as well as enhancing 

    clearly now my strategy makes sense, I have just seen it myself in detail. its the synergy between these clincs, that they don't even know of themselves.

    my result is my path, the conjunction of these therapies at these clinics. i am more confident then ever that i will beat this. that this really is a workable cure.

    i have some tears. sorry. this is life and death for me, and not just me my dearest friends.

    i have targetted and marked all my tumours with removab and ndv !!!!!!!!!!!!!!

    then I have had local avastin and its benefits regarding stopping immune suppression in the local tumour enironment as well as some local chemo just for fun.

    then I have the dendritic cell vaccine.

    I also have my litttle gcmaf yogurt activating macrophages.

    I can see that this combo had to work. its crystal clear.

    its doctor asir copic at hallwang who sent me to nesslehut. asir will be very pleased i can explain to him the synergy between local avastin, removab and DC vaccine.

    even the ozone therapy here to reduce inflamation. my crp is 0.1 . i have all the biological prerequisites for immune therapy to work.

    the other point is the value of reducing ROS, so knowing your genetics to manage your ROS exposure is critical.

    I have so much hope, but I have to not get ahead of myself. its going to be day by day for me.

    hopefully stage 4 colorectal by colorectal. month by month we may prove or disprove my theory and this set of therapies.

    http://en.wikipedia.org/wiki/Arginine can you see how surgery sets the stage for immune dysfunction in the local tumour environment via agine depletion.

    my jigsaw is looking beautiful, i hope yours is also. 

    its ok to dream about cures. I will see you on the whitehouse lawns when you, me and tans have lunch with obama. I will have a beer and steak! Only joking salmon and juice instead.

    we may help fix the USA financial problems and save a few friends. we might even get on the  front page of the cancer survivors network. who knows where this will end ?

    now thats thats what so nice about breathing, we never really know whats around the corner.

    have hope and faith my dear friends.

    hugs,

    pete 

    PS I have space in the car. Its a very nice car, see the blog for details. I am picking up my first friend on the 13th. she is not colorectal. the german cancer survivors network exists also.

    PPS http://petertrayhurn.blogspot.de/2013/01/my-sppech-for-healing-mass-you-never.html this blog has got the AHCC info, a book, essential reading for those considering immunotherapy.

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    k44454445 said:

    Pete

    i appreciate your posts. even tho i will not be able to go to germany, i love hearing about your experiences there. keep on posting! glad to hear you are better!!!

    hugs

    judy

    thank you for the prayers judy

    always lots of hugs. our lord works in strange ways. faith is the key. i was thinking of you when I did my speech at the healing mass.

    pete