Thank you, John23

NJC
NJC Member Posts: 73 Member
in Colorectal Cancer #1

I wanted to say thank you for all of your information regarding TCM. I know you, as well as Pete, have taken heat on your alternative posts but my wife and I thank you for your persistence.

A little background for you as well as others before I explain the post. My wife was diagnosed in September of 2010, 5m after the birth of our son, with Stage IV colon cancer. She presented with approx. 15-20 tumors in her liver and while they never said it until much later, they didn't think she'd live long. Fast forward 3y later and after numerous procedures, e.g. Chemo, Isolated Hepatatic Perfusion, RFA, liver resection, and most recently a failed Dendriritc Cell vaccine which started off successfully, her cancer came roaring back with 3 spots in right lung, new spot in liver, and nodal involvement from neck into pelvis.

We found the latter out 3 months ago and I began to pay more attention to your blog and past posts. She started back on chemo two months ago and is taking her 5th cycle as I type this...

The reason for the post was because of your blog and prior posts we found a qualified Herbal TCM in Pittsburgh. We met with her right after receiving the bad news and my wife decided to give it a try. We had originally planned to do the herbs alone but didn't feel comfortable taking that chance to start with. So she chose to do the herbs in combination with FOLFOX. She started the heabs a few weeks prior to her first treatment back.

Because of her low platelet, they had to reduce her initial dose by 1/3 to prolong her needing a splenectomy. After her first two treatments, her CEA was down 23%. To be honest, we weren't too sure what to make of that but felt optimistic about the herbs since the last time she was on FOLFOX (3y ago) it only kept the disease stable until they performed the liver perfusion in Jan. of '11.  

However, they needed to reduce her dose another 25% due to low white counts, platelets, etc., two weeks ago. Needless to say, we were concerned but figured this would be a true test as to the efficacy of the herbs. Well, we got our answer today in way of her CEA, which is a great marker for her...We found out that her CEA is down nearly 60% from 10 to 4. Given that she's on a 25% smaller dose then the original 1/3 less dose from two weeks ago, which caused her to fall out of therapeutic range, we expected the CEA to hang around it's previous mark of 10. Instead, she's down 60% since last month. 

So, given the further reduced dose from two weeks ago as compared to her full on doses from a few years ago, we can't help but attribute the current situation to the TCM herbs. She actually had a premonition last night that her TCM was going to save her life. Thankfully, it's looking great!

Anyway, I know it was long winded and verbose, but I wanted to say, "thanks" for preaching from your soap box since it's now doing wonders for my wife!!!

Joe

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    Havent seen a post from John
    Havent seen a post from John in quite some time. Thats great news that your wife is doing well. The onc didnt have any issue with TCM?
    I hope her premonition is true!
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #3
    jen2012 said:

    Havent seen a post from John
    Havent seen a post from John in quite some time. Thats great news that your wife is doing well. The onc didnt have any issue with TCM?
    I hope her premonition is true!

    John23

    All,

    I sent a note to John a couple of days ago, and when I didn't hear back I decided to check out his CSN personal page for any hints.  It appears that John will no longer be posting to this site due to a disagreement with another poster in regard to TCM.  This is very unfortunate for all of us since John was not only a wonderful person, but an experienced and insightful individual which made him a valuable resource for all members.  I will miss him on this site, and John, if you ever read this, thank you so much for all of your help when Rick needed it most.  I will never forget your kindness and assistance during a terrible and uncertain time.

    All my best,

    Cynthia

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Sorry to Hear

    John gave so much good advice.  I'm hoping that he will eventually come back.

    Kim

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    Good news leading to bad news

    That is good, no, fantastic news about your wife, Joe. May she continue to drop her CEA and beat this round of the bad stuff. 

    She is in my thoughts and prayers. 

    And the bad news about John. I wish we could all just get along. Heaven knows, we're all aware of how short life it, so we need to accept that everyone doesn't think the same way, and not make waves when someone doesn't follow the same path as we have chosen. 

    I hope John comes back here, as I have always enjoyed his posts and he will be sorely missed. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #6
    I'm very glad to hear about your wife!

    I hope the news just keeps getting better for her.

    As for John...that's really too bad.  I just wish people could be accepting of whatever paths others choose to take.  Many of us do a mix of both alt and conventional things anyway, so we should be able to at least be civil about it (which doesn't mean you can't ask questions, imo, just do it in a respectful way!).

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #7
    annalexandria said:

    I'm very glad to hear about your wife!

    I hope the news just keeps getting better for her.

    As for John...that's really too bad.  I just wish people could be accepting of whatever paths others choose to take.  Many of us do a mix of both alt and conventional things anyway, so we should be able to at least be civil about it (which doesn't mean you can't ask questions, imo, just do it in a respectful way!).

    Geez I wish people wouldn't

    Geez I wish people wouldn't have to leave this board because of  their treatment decisions.      Just out of curiosity which herbs is your wife using??  

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
    smokeyjoe said:

    Geez I wish people wouldn't

    Geez I wish people wouldn't have to leave this board because of  their treatment decisions.      Just out of curiosity which herbs is your wife using??  

    Based on the info on John's blog,

    the issue was that he violated the TOS for the CSN forum, by "giving medical advice", or trying to "influence" others in their medical choices.  So it wasn't related to his choice of tx, it was his way of interacting with others that led to the parting of ways.

  • manwithnoname
    manwithnoname Member Posts: 402
    #9
    annalexandria said:

    Based on the info on John's blog,

    the issue was that he violated the TOS for the CSN forum, by "giving medical advice", or trying to "influence" others in their medical choices.  So it wasn't related to his choice of tx, it was his way of interacting with others that led to the parting of ways.

    Now I get it...

    Anne, it may be true that John broke the T&C here that's not why he left, he left because I had the audacity to question TCM and instead of coming back with a refute he spat his dummy out.

     

    John I know you are still here reading so let me tell you my side, virtually everything I have posted here you managed to object to and still managed to promote your TCM at the end of it like a broken record. (not just here on another forum as well)

     

    You push TCM like it's harmless and scorn RT and Chemo 'poisons' that are in fact what the vast majority of people use and you don't see the problem with that….

     

    TCM herbs are not from a shop like the movie 'Gremlins' with an old wise Chinese man, they are grown in massive  industrial fields irrigated by raw sewage full of toxic metals and pharmaceuticals. 

     

    If you think thats BS prove me wrong instead of disappearing with the intent of making me look bad.

     

    I have nothing left to give to this forum so feel free to post again you certainly won't hear from me.

     

    And Phil, now your bizarre message makes sense, please use your influence to ban my I.P.

     

     

    Good luck to y'all.

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #10
    manwithnoname said:

    Now I get it...

    Anne, it may be true that John broke the T&C here that's not why he left, he left because I had the audacity to question TCM and instead of coming back with a refute he spat his dummy out.

     

    John I know you are still here reading so let me tell you my side, virtually everything I have posted here you managed to object to and still managed to promote your TCM at the end of it like a broken record. (not just here on another forum as well)

     

    You push TCM like it's harmless and scorn RT and Chemo 'poisons' that are in fact what the vast majority of people use and you don't see the problem with that….

     

    TCM herbs are not from a shop like the movie 'Gremlins' with an old wise Chinese man, they are grown in massive  industrial fields irrigated by raw sewage full of toxic metals and pharmaceuticals. 

     

    If you think thats BS prove me wrong instead of disappearing with the intent of making me look bad.

     

    I have nothing left to give to this forum so feel free to post again you certainly won't hear from me.

     

    And Phil, now your bizarre message makes sense, please use your influence to ban my I.P.

     

     

    Good luck to y'all.

    Godbless you tony and your son and thankyou

    I owe you and many for my current health.

    Metastatic crc is beatable without systemic chemo and new castle virus disease and ketogenic and b18 are working for my colorectal.

    Thankyou with all my heart.

    In a few days I lecture at the gcmaf conference in dubia 

    That how we met here. Gcmaf works and nobody cares.

    Godbless and thankyou again.

  • NJC
    NJC Member Posts: 73 Member
    #11
    Hi Jen,
    We are very fortunate

    Hi Jen,

    We are very fortunate in that our Onc and Surg Onc are not of the "my way or the highway" cloth. We were upfront and they "allowed" us to experiment provided we agree to stop if any numbers climbed unusually. To which we agreed. Thanks for the kind words. I'm certainly not here to pick-up where John left off as each one of you have the freedom to chose what ever path your heart desires. I honestly thought it was hokey at first but felt we needed to try something, so the proof is in the pudding for us...

    An interesting tid bit...Her WBC was 2.2 and her ANC was 1,000, which required her to need a Neulasta shot two weeks ago. Those numbers had been low for years and the Neupogen/Neulasta shot only ever bumped those numbers a few points. At the same time, the TCM added a few other herbs for low WBC and Neutrophils. Her lab results yestereay were 8.6 for WBC and 6,400 for ANC. With her platelets being low due to an enlarged spleen, she was just started on Turtle Shell two days ago, so it will be interesting to see what her platelets do over the coming weeks. CEA notwithstanding, she has had her diarrhea resolve, she's not sick after getting disconnected, albeit it she's on a lower dose, her NRG levels are higher, etc.

    Again, it's working for us and I'm not here to convert anyone. 

    Best of health to all!

    -Joe

  • NJC
    NJC Member Posts: 73 Member
    #12
    Trubrit said:

    Good news leading to bad news

    That is good, no, fantastic news about your wife, Joe. May she continue to drop her CEA and beat this round of the bad stuff. 

    She is in my thoughts and prayers. 

    And the bad news about John. I wish we could all just get along. Heaven knows, we're all aware of how short life it, so we need to accept that everyone doesn't think the same way, and not make waves when someone doesn't follow the same path as we have chosen. 

    I hope John comes back here, as I have always enjoyed his posts and he will be sorely missed. 

    Thanks!

    Thanks!

  • NJC
    NJC Member Posts: 73 Member
    #13
    annalexandria said:

    I'm very glad to hear about your wife!

    I hope the news just keeps getting better for her.

    As for John...that's really too bad.  I just wish people could be accepting of whatever paths others choose to take.  Many of us do a mix of both alt and conventional things anyway, so we should be able to at least be civil about it (which doesn't mean you can't ask questions, imo, just do it in a respectful way!).

    Thanks!

    Thanks!

  • NJC
    NJC Member Posts: 73 Member
    #14
    smokeyjoe said:

    Geez I wish people wouldn't

    Geez I wish people wouldn't have to leave this board because of  their treatment decisions.      Just out of curiosity which herbs is your wife using??  

    Joe,
    It's. lot of the

    Joe,

    It's. lot of the standard herbs John mentions as well as an assortment of others for her other issues associated with chemo.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #15
    manwithnoname said:

    Now I get it...

    Anne, it may be true that John broke the T&C here that's not why he left, he left because I had the audacity to question TCM and instead of coming back with a refute he spat his dummy out.

     

    John I know you are still here reading so let me tell you my side, virtually everything I have posted here you managed to object to and still managed to promote your TCM at the end of it like a broken record. (not just here on another forum as well)

     

    You push TCM like it's harmless and scorn RT and Chemo 'poisons' that are in fact what the vast majority of people use and you don't see the problem with that….

     

    TCM herbs are not from a shop like the movie 'Gremlins' with an old wise Chinese man, they are grown in massive  industrial fields irrigated by raw sewage full of toxic metals and pharmaceuticals. 

     

    If you think thats BS prove me wrong instead of disappearing with the intent of making me look bad.

     

    I have nothing left to give to this forum so feel free to post again you certainly won't hear from me.

     

    And Phil, now your bizarre message makes sense, please use your influence to ban my I.P.

     

     

    Good luck to y'all.

    FWIW, Tony...

    I reread that debate, and I'm not sure that it was that big of a deal.  You are both passionate people, and you both expressed yourself in a strong fashion.  I certainly didn't see anything that you did that was ban-worthy...and I'm not sure why John felt the need to remove himself from the forum because someone asked him to back up his statements.  You can't repeatedly say that "millions" of people have been cured of cancer and not expect someone to call you on it.

    Hopefully, tempers will cool and people will feel like joining back in at some point.

    I hope your son is doing ok, I think about you guys a lot.

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