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I am torn between flaunting and sharing my success

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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

 

wolfen's picture
wolfen
Posts: 1176
Joined: Apr 2009

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's picture
herdizziness
Posts: 3390
Joined: Apr 2010

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's picture
annalexandria
Posts: 2184
Joined: Oct 2011

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's picture
thxmiker
Posts: 1202
Joined: Oct 2010

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

Best Always, mike

 

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

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's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Wish I didn't...but I do. 

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

-Craig

John23
Posts: 1832
Joined: Jan 2007

 

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's picture
dmj101
Posts: 521
Joined: Nov 2011

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's picture
LivinginNH
Posts: 1271
Joined: Apr 2010

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's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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
Posts: 753
Joined: Apr 2011

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's picture
tachilders
Posts: 315
Joined: Jun 2012

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 

John23
Posts: 1832
Joined: Jan 2007

 

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
Posts: 1188
Joined: Aug 2012

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.  

John23
Posts: 1832
Joined: Jan 2007

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

tanstaafl's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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

John23
Posts: 1832
Joined: Jan 2007

 

“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

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

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

PhillieG's picture
PhillieG
Posts: 4665
Joined: May 2005

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's picture
tachilders
Posts: 315
Joined: Jun 2012

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 

z's picture
z
Posts: 1251
Joined: May 2009

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
Posts: 294
Joined: Jan 2010

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

renw's picture
renw
Posts: 282
Joined: Jan 2013

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's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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's picture
KathiM
Posts: 7874
Joined: Aug 2005

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's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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's picture
tommycat
Posts: 790
Joined: Aug 2011

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's picture
tachilders
Posts: 315
Joined: Jun 2012

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's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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
Posts: 1428
Joined: Feb 2011

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's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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
Posts: 390
Joined: Jun 2012

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?

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pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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
Posts: 390
Joined: Jun 2012

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

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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.

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pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hallwang focused on reducing viral load,

I would consider the rgcc molecular profile and the cfs panel for your son, ask your doctor.

virus produce nagalase also.

some of the virus i suspect produce il10 ie hpv , so its possible viral load load stop removab.

that  why do removab at hallwang not in sydney. ( this is for Ana)

we are really onto something, i am back into pubmed mode.

i am ready for nesstlehut today, this is going to be fun.

hugs,

Pete

PS my biology does hold the key to my cure and yours

its clear that MDSC can block immunotherapy, now my therapies have worked so well. 

CONCLUSION i do not have an MDSC problem ?

now the question is why not ? is it genetics, my diet, my supplements

I have so many tests, noones biology is more documented than mine. teasing out the details will help

us find a way through the maze.

 

 

manwithnoname
Posts: 390
Joined: Jun 2012

"The addition of COX-2 inhibitors or silencing of COX-2 in 3LL cells, completely blocked their ability to induce arginase I in MDSC"

Haven't you been using celecoxib?

Just a guess....

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

dear tony and all,

between the two of us, we are documenting the colorectal stage 4 immunotherapy based survival path.

the absolute beauty, is that we are so far ahead of conventional medicine, that their is no conflict.

these posts, are the beginning of a hope based treatment regime with immunotherapy at its core. they are filled with science which has merit, is plausible and conveniently explains my survival.

the chemo based options still exist, but the first points of call has to be immunotherapy based solutions.

lets call it "try before you die" approach.

don't you remember "navy" the labrador, the navy protocol. all I needed was a few pointers from a few friends. how can i ever repay you ?

My willingness to try all these therapies, the brute force approach to individualised medicine, and doing it so openly on the net means that,

potential so many of my friends here are now thinking about pete's story.

 

if as a community we can pulled together about 50 cures over the next few years from friends on colonclub and CSN. can you see the potential.

we will have a dendtritic cell lab based in the states using doc N expertese. he is already doing it with doctor chang in new york.

in fact another load of vaccines is being flown over next week. but do you want to know a secret, the us patients are not getting the same results as i am getting.

your legal framework in the us, its the same in australia ( and all other developed ) does not permit the therapies in these clinics. the services just don't exist I suspect.

its our responsibility as patients to encourage, or gently force change on our systems of government.

 

ask yourself why is doctor N flying dendtritic cell vaccines to US soil. whats wrong with your country? I'll leave that for my american friends to answer.

 

its tragic that the time delay for the adoption, will cost so many lives, so many friends lost. so much life and money wasted. the magnitude of the that very loss, worth contemplating. the magnitude of that loss should serve to motivate politically active stage 4 survivors to demand the best medical care. so maybe the taunting of my therapy success is not taunting.

maybe i am duty bound, indeed privileged to be the first here on these forums to prove publicily that these immune based therapies work.

to highlight their potential to enhance our quality and quantity of life, above and beyond chemo.

i am filling my obligation to all my dead friends, my public campaign, is just one mans story. but it is a real story. its a great news story. this is such an emotionally intense phase of my life. this is my greatest achievement. I can see my continued existence as essential to proving these therapies are curative of stage 4.

the challenge is now laid squarely on all other cancer patients. its very very simple. 

we will all be judged by our actions and our lack of action. that includes us personally, us as a community and as countries.

if you believe my story, ask your oncologist about immune based therapies. state very politely that you won't to live, that you want to try therapies similar to pete's

get a few opinions , from a few oncologists , even from some alternative specialists.

the few of us with the insight, education, will power, who have focus, need to demand and implement change,personally and as a community we really need to step up to the challenge.

if we don't then the less fortunate among us will have no hope. its our responsibility, now given we are living with our mortality squarely starring us down, is their a better or more nobel stance to take. even if your only therapy choice is to take chemo each fortnight, you can demand access to these services and therapies.

the more of us who demand these therapies, the faster they will materialise for all the rest. and future generations. these are not magical cures for everybody.

but the "immunotherapy revolution" has started, its my campaign. Marie you asked me once what I would do re political change. I ask you, and everyone on CSN what action

you will take in the light of my story. Its your own health, you have to take your own actions and get the best advice and care.

At the present moment, that care to me appears to be in a few clinics in germany. That situation can change very very fast. it just needs a few phone calls from obama.

i actually think he is up for the challenge. we just want one large immunotherapy based clinic in the USA and most importantly the legal framework amended so that these german based therapies can be practiced on your soil. obviously i want the same thing for australia, canada, uk, spain, holland. actually in every county where we have csn members. those members themselves to demand change and the best care.

its been easy for us to be passive cancer patients, for so long now. my story could be a catalyst, a chance to fast track these therapies. i am one man, together we are many.

i ask, what can a motivated group of terminally ill colorectal cancer patients accomplish ? its an open ended question.

I know in my heart whats clearly possible. i have a vision of that immunotherapy lab and services being provided asap. whats been missing all these years in the cancer field to me seems to be political change.

so now a group of terminally ill colorectal cancer patients have to take on the us government to get access to these therapies. I will take on the australian government.

i think its only fair we split up the planet, country by country. as soon as we get one country converted, the others will fall like dominos. Australia will be easy, we got a federal election coming up in 8 months. I already have the name of the head of the DC lab down under "julien barton", he does not even know it yet. i have never emailed him.

he is the dendritic cell researcher who developed my p2x7 peptide dosing for my vaccine. his research had to go to germany to be tested in me.

now his research comes back to him in a living cured cancer patient(pete). i think he qualifies for the job.

i know we will win in the end. we have too. the first time we all meet will be on the white house lawns, having lunch with obama. all our families as well.

I hope this is not to positive, hopeful or motivational for the american cancer society. this makes the challenge of the walking post, look like a walk in the park.

I begged the management of the american cancer society two years ago to highlight the walking post, to get it encouraged on all the forums. they ignored me then. they 

may ignore me again. I hope I don't get banned. maybe its time for the american cancer society to step up and help us all take action.

hugs,

pete

PS re celebrex, having another now. another piece of the puzzle. 

can you see how we are effectively back filling my regime. 

so I start with this massive ridiculous, laughable pain in the butt supplement regime.

now I have my fantastic result, that means that components of what i am doing have worked.

tony, thanks again for highlighting the science of MDSC and celebrex.

herdizziness's picture
herdizziness
Posts: 3390
Joined: Apr 2010

as a USA citizen, former military I'm answering your question as you requested:

No country is perfect, and I'm D@MNED PROUD of my country.  So try and leave your assessment of the failings of my country alone of which you have no expertise, and concentrate on your own.

I like you Pete, but don't start trying to down my country over your strange and unorthodox methods not being accepted here on the soil of the GREAT country of the United States of America.

Winter Marie

Lovekitties's picture
Lovekitties
Posts: 2902
Joined: Jan 2010

Pete, if you will recall when you first started on your mission to find alternatives, you received many negative comments from those who were bound to the traditional methods for fighting CRC.  You asked all for consideration and to not knock your efforts.

Now I ask the same.  Comments like "ask yourself why is doctor N flying dendtritic cell vaccines to US soil. whats wrong with your country? I'll leave that for my american friends to answer." are unnecessary within the discussion of what you are doing for your health.

Providing factual information regards to differing treatments in differing areas of the world is fine, but it is unnecessary for you to "slam" an area not conforming to what you personally feel is right.

Marie who loves kitties

PhillieG's picture
PhillieG
Posts: 4665
Joined: May 2005

I am torn between flaunting and sharing my success

"if as a community we can pulled together about 50 cures over the next few years from friends on colonclub and CSN. can you see the potential."

Pete, I like you, you're an interesting fellow for sure and you have incredible passion for what you do. I also like your attitude of not considering yourself, or all of us, victims but that's part of who you are which was evident in your SCUBA "adventure"...

BUT (always a but - or butt in our case) I just can't see how you could pinpoint what has been the "Magic Bullet" in your vast journey. I've followed your journey for the most part and it's been a roller coaster of trial & error to get where you are. I may be way-wrong but I've seen you mentioning using chemo as of late. Is there a possibility that helped too?

I think you really need to keep in mind that what works for one may not work for others. Cancer's not that simple. That's not to say that our immune system, diet, exercise, genes, environment, attitude, etc are not part of the puzzle. They all are part of it as are getting a good or great medical team in place. Face it, you can have the best therapy but if your doctor is incompetent you're kind of screwed as has been the case with some members here. 

Not being "Dr. Phil", all I can offer are my opinions but I would imagine that if previous therapies haven't worked, then maybe the latest ones helped you? 

While I too love my country, I know what it's capable of doing and how the bottom line EVERYWHERE is the Almighty Dollar. It's the driving force behind most of what we do... There's little if any chance of getting things done as long as lobbyists are writing the laws which unfortunately, IS how our Govt "works".

When I think of how we, as cancer patients/survivors/advocates, can make a difference, I always think of Dave deBronkart, widely known as “e-Patient Dave,” who is a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights.

From Dave's website:
An engaged patient plays an active role in his or her care. Or, as e-patients.net founder “Doc Tom” Ferguson said, “e-Patients are Empowered, Engaged, Equipped and Enabled.”

We who’ve become e-patients don’t wait for our providers to tell us everything; we get it in gear, we ask questions, we do what we can to help.

Don’t think you’re qualified? Trust yourself. You know more than you think you do.

CRI Awards $10 Million to Advance Immune-Based Cancer Treatments. While this isn't our Govt doing anything, things are being done and I do feel too that it's up to us to push for change. 

As far as flaunting your success goes, I would be curious to see how the credit is dispersed.

Bottom line, I'm glad you're still around :-) 
-phil

 

 

 

manwithnoname
Posts: 390
Joined: Jun 2012

been using AHCC for a while, replaced it with MGN-3 (biobran) trying to mix things up, my concern with AHCC was IL-beta production (not sure that's good for us) anyway so little research on this stuff sometimes you just have to go with your intuition.

When you have your Docs attention mention Imiquimod (Aldera) as an adjuvant, can't see any reason not to do this, it activates TLR 7+8.

At the minute I'm reading about T-memory cells and fatty acids, Metformin rears it's head again....you still taking it?

Dr. Slavin also put me onto cord blood cell therapy (MSC's) , these cells home into tumours for some strange reason without the immune system destroying them, so you can attach chemo or viruses that  go straight for the kill.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

the consult with doc N was amazing. yes yes yes for metformin. it does mTor as well. Hallwang put me onto metformin 8 weeks ago at my request.

the dosage I am on per doc N is 850mg twice a day breaky and dinner with FOOD. I hope this helps. Seek the cure, if its not offered by conventional then go exploring,

off off off label is where the action is. Of course we should get medical advice. It get my nice advice in germany. the best doctors speak german.

doc N no issues with IL-beta, did not discourage use AHCC, its my second day on AHCC. did you see AHCC pdf on my blog, its a good read, a light on for i guess.

doc N said I am one in ten. I still have an outstanding result.

would you mind emailing over the t-memory cells and fatty acids stuff. the memory T and fatty acids reminds me of hallwang, its what they did to me. 

have you ever noticed that all roads lead to Rome.

so many co-incidences between both of our obsessions, not really co-incidences though, are they. Sharing the results of our research and therapies here essential.

the old ways are dieing, the new wave is here now, for those able to access it.

re Imiquimod i will ask doc N next monday arvo when i get the vaccine injection. I know his answer already NO.

if it ain't broken, don't fix it. my immune system is eating my tumours as I type this message. I don't need to tweak it, I need to support it and keep on doing exactly what I have been doing. but its a good suggestion and maybe appropriate for some. doc N clinical management is essential, we are all so different considering lifestyle and genetics and illness.

The video of the consult I will share if anyone is interested. its absolute GOLD. pm or email me for the link. I don't think the consult should be publicly available.

hugs,

Pete

 

 

 

tanstaafl's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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.

manwithnoname
Posts: 390
Joined: Jun 2012

I think your metronomic 5FU is keeping these down, the ATRA response to many tumours makes sense if it's also surpessing MDSC's, I did mention metronomic 5FU to our Professor but this stuff is cutting edge.

Will wait and see, for now amino acids are the tool.

vinaykumar
Posts: 66
Joined: Dec 2012

was there fever after the DC shots? i got my dad started on DC yesterday but there was no fever or chills . wondering if it means that the DCs did not work ??

 

GM-CSF is good ... not sure how and where you are procuring it from ?

manwithnoname
Posts: 390
Joined: Jun 2012

There was no fever but there was a slight headache, his tumour is in the brain so that was interesting.

Our Dr. is a professor of immuniology, I guess that means he can get all kinds of things. He has stuff most Dr's have never heard of.

Lovekitties's picture
Lovekitties
Posts: 2902
Joined: Jan 2010

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's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

he said 

if it aint broken don't fix it. 

my immune system is clearly working well. we don't change anything.

the cea is just a marker, what counts most is the pet,the ct, the mri i have just all had that are clear my dear.

so if you come to see doc N here, he is a scan man. bring him what he likes, scans of your disease.

the difference between the labs, betweeen countries important for the records, the completeness.

a clear example of one of the many confounding realities of treatment between two medical systems simultaneously.

the positive is i got the ca19-9 trending down confirmed. the cea trending down confirmed at an independent lab.

it gives more certainty to my result. thats the benefit of my excessive testing regime. the skeptics cannot ever argue any of these results.

 

the other positive is that the sydney cea and scan had me thinking i was clear. so my illness is heading into remission, but i certainly need to be here getting treatment.

not sitting at home sitting on the beach relaxing just yet.

 

the plan going forward, is a total of 4 vaccines a month apart, then the 5th at three month interval. i am getting my second vaccine monday,  so effectively another couple of months here in germany and then back home to the family in the next school holidays. and then back here for 3 months. I guess developing this "staying ned" plan needed me to turn up here.

now i have a tactical plan outlined, i can see the wife and kids turning up some time in the next 4 weeks for a holiday for a few weeks. it kind of answers winter marie's question above.

hugs,

Pete

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