I am torn between flaunting and sharing my success

dear friends,

I have started round two of the second dendritic cell vaccine with high hopes.

this afternoon I had another chemo embolisation split 50 50 lungs and liver with irenotecan and mytomycin and avastin ( off label use , as direct inject not tested offically)

the good news is dr vogel said the mri and ct are excellent. he described my response to the treatment as like 1 in 40.

thats bitter sweet, in that my therapy response for however long it continues is more tired up with me, than the german therapies themselves.

possibly I am guilty of the assumption that whats worked for me, would work for others. if my over exuberant posts and replies have upset anyone I m sorry.

I have the best intentions, the dilema I face is do I share my experience so that maybe 1 in 100 here might come and try the therapies and in the process effectively taunt the other 99. I am also aware that many newbies here may not appreciate the effort I have put into my result. 

I am so tired, just got off the operating table and drove to airport with a number leg in the snow. the german therapies are challenging in many respects and

I know they are out of reach the most existing conventional based colorectal patients.

the doctors here are also nervous, I was booked in for another chemo embolisation in a month.

Ì do firmly believe my success is repeatable ( I am human, my biology similar to yours ), but that to have a chance at success you require similar financial resources and commitment and focus I have developed.

hugs,

Pete

 

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Comments

  • wolfen
    wolfen Member Posts: 1,324
    My Friend, Pete

    There is nothing wrong with you being exuberant about your successful treatment. While it's true that for most of us that the financial obligations are not within our reach, there are new members joining all the time. Who's to say that your treatments may not help someone else. I applaud you for your research and cutting edge treatments and wish only the best for you.

    Remember to get some rest in there somewhere.

    Luv,

    Wolfen

  • herdizziness
    herdizziness Member Posts: 3,624
    Good Heavens

    I'm glad you are doing so well, but since everything you've done includes chemo your other stuff is just stuff you do, but no idea if it works or not.

    Pete, why are you going through so much chemo again if your scans are clear and your CEA is 3.2?

    Concernedly,

    Winter Marie

  • annalexandria
    annalexandria Member Posts: 2,571
    I don't think anyone is taking offense, Pete..

    although it might be more diplomatic to not suggest treatment that costs 120 k to someone who has mentioned that they are on Medicaid!  Otherwise, I would say keep up what you're doing.  Even if none of us ever try your approach (although I just read that someone was thinking about trying it, can't remember who it was...typical), it's still interesting to read about it.  And personally, I'm just happy to see someone doing well in the cancer fight, whatever means they might use to get there.  You aren't out there trying to convince newbies not to do chemo, as far as I've seen, so it's all good.  Hugs~AA

  • thxmiker
    thxmiker Member Posts: 1,278
    Keep the Positive Coming Pete!

    We alll need to hear the positive news, so keep it coming Pete!

    Best Always, mike

     

  • BusterBrown
    BusterBrown Member Posts: 221
    Keep on keeping on...

    Pete,

    No apologies necessary here. In my book you are a pioneer, you're going out on a limb and trying something few have tried. Continued success and keep up the good work. Please continue to let us know how you are progressing...

    Buster

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    "I Understand"

    Wish I didn't...but I do. 

    And that's the damnation of it all for me.

    -Craig

  • John23
    John23 Member Posts: 2,122
    Gee, Pete…..

     

    The medicinal strength imported herbs I used cost around $5 per pound, with a pound providing a month and a half of broth treatments. I used 7 different herbs, so the cost for a month and a half of treatment was still –well- under $100.

     

    Stage four colon cancer in 2006…. 6 months of herbs, with a 6 month break between….two years worth? And I’m still typing Pete! No side effects, and I haven’t taken any of the herbs in the past three years!

     

    I guess if one has $120k to burn, it’s worth it to try “German holistic medicine” instead of inexpensive TCM?

     

    (Personally, I think I liked my path better…..)

     

     

    Best wishes for you, man! I do hope it works well.

     

    John

  • dmj101
    dmj101 Member Posts: 527
    Your sucesss is Great News!

    Your sucesss is Great News! and I too would be shouting it from the rooftops.

    However I too am one of those people that says.. Why not me... but still happy to hear about successes and know "All in good time"..

    Keep it going Pete..

    All the best. Donna

  • LivinginNH
    LivinginNH Member Posts: 1,456
    Dear Pete,
    I too applaud your

    Dear Pete,

    I too applaud your determination to find a cure for yourself, and it's wonderful that your CEA has dropped, but as some others have mentioned, you simply need to show a little more decorum in regard to your wealth.  My guess is that 99% of cancer patients don't have a spare $120k to spend on a few weeks of trial therapies in Germany, therefore you are truly fortunate to be in that 1% category.  I wish you many more years of being NED and for a very happy and healthy future for you and your family.

    All my best,

    Cynthia

  • tanstaafl
    tanstaafl Member Posts: 1,300 Member
    early life insurance settlements?

    One possible source of funds is a viatical settlement on life insurance.  Pete's process sounded almost too easy, figure it will probably be more difficult and expensive in the US. 

  • janie1
    janie1 Member Posts: 753
    tanstaafl said:

    early life insurance settlements?

    One possible source of funds is a viatical settlement on life insurance.  Pete's process sounded almost too easy, figure it will probably be more difficult and expensive in the US. 

    Pete, keep getting the word
    Pete, keep getting the word out there, drawing attention to curing cancer.
    Dr. Chang in NYC is trying. I asked someone why don't more doctors do what he is doing. They explained the many obstacles for doctors wanting to do more.
    It is a dirty, rotten, shame.
    The pace of advancement is numbing. Some of the chemo drugs are over 40 years old.
    I like that you get the media involved. Keep it up, but take care of yourself.
  • tachilders
    tachilders Member Posts: 313
    It was me who said that I

    It was me who said that I might try and go to Germany like Pete, but only if I can get an advanced pay-ouy on my life insurance, as tans mentions.  My criteria for that is <12 months to live diagnosis, and not sure if I can get my oncs to officially state that (haven't asked yet).  It would be a HUGE financial and personal sacrifice to go to Germany for 3 months or so for initial treatment, especially for a 1 in 40 chance of success.  My odds would need to be closer to 1 in 3 or 1 in 4 to spend the time and money, so we will see what Hallwang says after reviewing my medical records.  As I have stated before, one anecdotal case does not provide enough info to make any kind of statement about what works, especially for other people with vastly different disease states.  Stage 4 describes a HUGE range of metatastic conditions, and the progonosis may not even be close to the same for 2 different stage 4 patients.  MY particular prognosis was not good at all, but I am here 8 months later, taking standard chemo, having almost zero side effects, working full-time, and feeling normal 99% of the time.  My blood counts have been pretty much normal all the way through chemo.  However, most people do not do as well with chemo as I have, so I would never tell someone else to expect my results.  In my opinion, the most important things that determine our final prognosis are the genetics of our particular cancers (does it respond well to chemo/avastin/erbitux), our health going into treatment, and the extent of spread of the disease (is surgery an option).  These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.

    Tedd 

  • PhillieG
    PhillieG Member Posts: 4,866
    Nothing Wrong With Sharing...

    But you've done SO many therapies, to what can you give credit too? Many alternative ones with mixed results and many scares.
    Now you've added chemo (irinotecan and mytomycin and avastin) and things are looking better.

    Was it Chemo?
    Was it Ocean Enemas? (I still won't go back in - and I just got over seeing Jaws 5 years ago!!!)
    Was it Sea Cucumbers on Whole Wheat?

    I'm VERY happy you're doing well but it seems (to me at least) that it would be hard to give "The Credit" to any one therapy and like I always say, Cancer is not one size fits all...
    -phil

  • tachilders
    tachilders Member Posts: 313
    I forgot to mention that

    I forgot to mention that there is absolutely nothing wrong with sharing successes, just realize that most people can't begin to afford what you are doing Pete, so it's not even an option for most people on here.  Also, there are many here that have done well (and are continuing to do well) by taking standard therapy (chemo, surgery, etc...), so there is plenty of proof that it can and does work as well.  There are also people like John who have done well by doing only holistic/alternative treatments, so that can also work for some people.  The key is that for every one person on here who does well and survives for 5, 8, 10 years or more, there are many others that do the same thing and only survive for a much shorter time.  In summary, please cintinue to share successes (we all need to hear good things and have hope), but don't criticize others for doing what they can (or maybe feel is best for them) due to whatever reasons (financial, belief in their doctors, whatever....).

    Tedd 

  • John23
    John23 Member Posts: 2,122

    It was me who said that I

    It was me who said that I might try and go to Germany like Pete, but only if I can get an advanced pay-ouy on my life insurance, as tans mentions.  My criteria for that is <12 months to live diagnosis, and not sure if I can get my oncs to officially state that (haven't asked yet).  It would be a HUGE financial and personal sacrifice to go to Germany for 3 months or so for initial treatment, especially for a 1 in 40 chance of success.  My odds would need to be closer to 1 in 3 or 1 in 4 to spend the time and money, so we will see what Hallwang says after reviewing my medical records.  As I have stated before, one anecdotal case does not provide enough info to make any kind of statement about what works, especially for other people with vastly different disease states.  Stage 4 describes a HUGE range of metatastic conditions, and the progonosis may not even be close to the same for 2 different stage 4 patients.  MY particular prognosis was not good at all, but I am here 8 months later, taking standard chemo, having almost zero side effects, working full-time, and feeling normal 99% of the time.  My blood counts have been pretty much normal all the way through chemo.  However, most people do not do as well with chemo as I have, so I would never tell someone else to expect my results.  In my opinion, the most important things that determine our final prognosis are the genetics of our particular cancers (does it respond well to chemo/avastin/erbitux), our health going into treatment, and the extent of spread of the disease (is surgery an option).  These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.

    Tedd 

    Tedd –

     

    Re:

    “These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.”

     

    Just to quickly note: Traditional Chinese Medicine (TCM) is not an “experimental therapy”, it’s been practiced for nearly four thousand years with billions upon billions of humans, and continues to be used to this day in many of the finest Asian hospitals.

     

    The TCM practitioner we use has treated “late term” cancer victims that western medicine had given up with; the victims oncologists had referred them to our TCM doc. As far as I know, each one remains alive today, years after being told there was little if any time left for them. But no TCM practitioner will ever claim to be able to “cure cancer”, in spite of the success rate!

     

    The herbs I had used (I haven’t taken any in years now, although I should as a precaution), cost an amount that can be afforded by nearly anyone. I strongly suggest having a qualified TCM practitioner or herbalist on hand, to insure no problems arise that can’t be quickly resolved, if one attempts “self medicating”; the herbs are  all medicinal strength and not the types one would find “on the shelf”. It’s not simple over-the-counter turmeric or cinnamon……..

     

    My “blog” here at CSN explains more. There are many options and alternative to be used, but none should be costing anyone their life savings. If it is or does, it should be a cause to be suspicious and wary.

     

    Best wishes for better health,

     

    John

  • jen2012
    jen2012 Member Posts: 1,607 Member
    John23 said:

    Tedd –

     

    Re:

    “These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.”

     

    Just to quickly note: Traditional Chinese Medicine (TCM) is not an “experimental therapy”, it’s been practiced for nearly four thousand years with billions upon billions of humans, and continues to be used to this day in many of the finest Asian hospitals.

     

    The TCM practitioner we use has treated “late term” cancer victims that western medicine had given up with; the victims oncologists had referred them to our TCM doc. As far as I know, each one remains alive today, years after being told there was little if any time left for them. But no TCM practitioner will ever claim to be able to “cure cancer”, in spite of the success rate!

     

    The herbs I had used (I haven’t taken any in years now, although I should as a precaution), cost an amount that can be afforded by nearly anyone. I strongly suggest having a qualified TCM practitioner or herbalist on hand, to insure no problems arise that can’t be quickly resolved, if one attempts “self medicating”; the herbs are  all medicinal strength and not the types one would find “on the shelf”. It’s not simple over-the-counter turmeric or cinnamon……..

     

    My “blog” here at CSN explains more. There are many options and alternative to be used, but none should be costing anyone their life savings. If it is or does, it should be a cause to be suspicious and wary.

     

    Best wishes for better health,

     

    John

    Yes, my husband is doing the

    Yes, my husband is doing the chemo/surgery route right now, but I have read through John's blog and am keeping it in my back pocket.   I think it's worth a try, maybe even during a chemo break?  I'm not quite sure how it all works with chemo and I'm sure that forwarding the info to the oncologist won't help.   John - how do you go about finding a good TCM doc?

    I truly hope that Pete is here telling his story many many years from now, but I do think it's too early to say cure....or even what caused that cure.  

  • tachilders
    tachilders Member Posts: 313
    John23 said:

    Tedd –

     

    Re:

    “These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.”

     

    Just to quickly note: Traditional Chinese Medicine (TCM) is not an “experimental therapy”, it’s been practiced for nearly four thousand years with billions upon billions of humans, and continues to be used to this day in many of the finest Asian hospitals.

     

    The TCM practitioner we use has treated “late term” cancer victims that western medicine had given up with; the victims oncologists had referred them to our TCM doc. As far as I know, each one remains alive today, years after being told there was little if any time left for them. But no TCM practitioner will ever claim to be able to “cure cancer”, in spite of the success rate!

     

    The herbs I had used (I haven’t taken any in years now, although I should as a precaution), cost an amount that can be afforded by nearly anyone. I strongly suggest having a qualified TCM practitioner or herbalist on hand, to insure no problems arise that can’t be quickly resolved, if one attempts “self medicating”; the herbs are  all medicinal strength and not the types one would find “on the shelf”. It’s not simple over-the-counter turmeric or cinnamon……..

     

    My “blog” here at CSN explains more. There are many options and alternative to be used, but none should be costing anyone their life savings. If it is or does, it should be a cause to be suspicious and wary.

     

    Best wishes for better health,

     

    John

    I will read your CSN "blog"

    I will read your CSN "blog" more closely....  I am certainly interested in anything that has the potential to help me.  I have a good friend at work who is a Chinese doctor, so I will ask him if he can recommend a local TCM practitioner that I can talk to.

    Tedd

  • z
    z Member Posts: 1,411 Member
    Pete

    Hi Pete, I am happy of your great success!  For the 1st time, I see that someone has had the mytomycin, whereas, I had 1 infustion on the 1st day of my chemo/radiation tx for anal cancer.  Anal cancer has about a 30-40 day tx plan.  I completed tx on 6-30-09 and so far so good.  I wish you continued success. Lori

  • here4lfe
    here4lfe Member Posts: 306 Member
    Pete you're not flaunting

    I see it as leaving a legacy, your life after diagnosis. Your legacy, as well as the others on this site, maybe to show someone else a way to live, work, love, be happy and leave a legacy after a diagnosis of CRC.

    My wife chose to leave a part of herself with everyone she knew. Her hands numb and stiff from Oxy she made about 100 handmade blankets, each one tailored to the receiver. She would talk to their friends and family to find out what their favorite sports team, or colors, or cartoon characters, what height they were so she knew how much fabric to buy. She set-up two tables in our family room and slowly cut and tied each knot to hold the two pieces together. When she got tired she would let me help her but when she recovered enough strength she moved me out of the way and continued. Then she sewed into each one a modest tag, Handmade with Love. She refused to put her name on it, just Love. Then we travelled, and the last thing she did as we were leaving was to hand a blanket to the receiver. 

    She wrote and delivered her own eulogy, one hand-tied knot at a time.

    Best

  • John23
    John23 Member Posts: 2,122
    jen2012 said:

    Yes, my husband is doing the

    Yes, my husband is doing the chemo/surgery route right now, but I have read through John's blog and am keeping it in my back pocket.   I think it's worth a try, maybe even during a chemo break?  I'm not quite sure how it all works with chemo and I'm sure that forwarding the info to the oncologist won't help.   John - how do you go about finding a good TCM doc?

    I truly hope that Pete is here telling his story many many years from now, but I do think it's too early to say cure....or even what caused that cure.  

    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