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its always been the immune system, your onc need to be educated, asco 2013 is a watershed.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i love being controversial. dont read any further if you dislike alternative therapies and only want to do convnetional therapies.

so here goes a scud missle into conventional oncology.

the latest tests allow us to know your prognosis by measuring the degree of til inflitration into your tumours.

til = tumour inflitraing lymphocytes.

so those who say the immune system has nothing to do with survival are just misguided fools who should really be quiet. sorry thats how I see it.

any and all steps to boost and preserve immune function while reducing tumour burden should be undertaken.

I believe god helps those who helps themselves. he has introduced me to some amazing doctors and scienists and allowed me to get into conferences and do therapies i could only dream of.

alas the more vivid my mortality becomes, now recurrence 2 in the liver again, well is threatening and challenging all at once. 

ask your onc about til's ? see what they really know.

not much money in immunotherapy, not much money holistic medicine. after all pushups are for free. so is walking, but now days I sprint!

I got my infected port out in a german hospital total cost $250 usd, my american friend chalie got his infected port out in a usa hospital total cost $10,000

those who dont believe greed has completely corrupted every aspect of our western health sytems are knaive in the extreme. yep 10,000 against 250, think about that!

so I am having gamma delta cell therapy, ask your onc about that! I am praying for CEA = 0 and another clear PET, thats the goal of this newest therapy, time will tell!

I will die one day, might even be from this disease, but I am not going to die quietly or without an extreme fight. besides all the prayers and support that is offered on CSN, which is fantstic, well there are therapies that can help beyond the standard of care. In the west, its just such an irony that many of my USA friends come to germany for treatments that work. its all about the money, I am certainly saying german medicine is perfect, its just the best value. ie one gives me the best quality and quantity of life, the other a painful survivorship if I am lucky or an unpleasant death.

ASCO's 2013 immunotherapy talks prove its the future, the real focus has to be holistic health, immunotherapy not drugs, although they really to help.

chasing drug based cures is crazy when you got so many accessible therapies at our finger tips, the greatest unfolding tragedy is so few try these alternative therapies. 

are they really alternative ? 

The answer is a very personal. 

My answer, well you know is they are not. Conventional medicine scares the crap out of me, i know the damage it does, I have nerve damaged feet, like most here, hernias and certainly enough pain to last a life time. Oh and I almost forgot, the seeding of many micro mets all through my peritoneam when they did the resection 3 years ago. I am seeking to minimise and avoid conventional side effects that as long as possible. not doing so bad so far.

there really is a better way, ask you onc ? demand first class care, not the standand of care.

hugs,

Pete

Miss Cindy L's picture
Miss Cindy L
Posts: 34
Joined: Dec 2011

For a while I have been a lurker here but have always read your posts Pete and agree with you 100%. I have done in depth research and have a question for you....does Mexico offer the same treatments you have been recieving in Germany? My daughter and I read up on it yesterday and seem as though some of the treatments centers are offering very similar options some of which I know you have done by reading your posts. Mexico is geographically closer for me and want your opinion since I know you are well versed with this subject. Any and all input is greatly appreciated!! Pete I wish you many years of health and continue the intense hunger to learn and share with us your knowledge. I am one of your fans!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

such a nice change to have a kind reply, watchout the thought police might come knocking.

the simple answer is no, only nesslehut in germany offer gamma delta cell therapy, i am betting my life on that and tace at this point. I am putting my money where my mouth is and i am testing these therapies on a real life metastai colrectal before i advocate or share them publicly. lots papers and trials, what dominates my awareness, what gets my attention is accessible experimental therapies, not RESEARCH thats going to be a drug in 10 years. so i pay some dollars and i get some therapies, sometimes drug and i see how i go. its personalised and fast and flexible. I can do what i want, when i want it, ITS not bound by the issues of a clinical trial, who wants to be in the placebo group. the answer all the alternative skepics.  hallwang and a few other german clinics offer ipt with chemo, most alternative doctors do something like ipt but with naturals or supplements but cytotoxic drugs. low dose targetted oxaliplatin has a certain attractivenss. the idea of 1/10 the dose achieving the same effect in an ipt setting is what i suspect maybe in store for me at hallwang. I am driving 5 hours from dudestadt to hallwang today. everyday is precious in this battle, so i think germany and hallwang is the place to be. i am not objective, i owe my life clearly to these doctors and grateful enough to thank them publicly. i just wish they could do miracles for my other colorectals friends. alas i am grateful for my miracle, and pushy enough to ask for a second, to cleanup recurrence 2 in the liver. it might already be gone.

seriously mexico is interesting, i have no direct personal experience. they are big on b17 and gersin. that said i have met many american friends at hallwang clinic, they have all been to mexican clinics and have ended up at hallwang. the mexican advantage and its a very very big one is they are not control by the fda and usa laws. thats got pluses and minuses. the potential exists for state of the art dendtritic cell therapy labs to open up on the boarder, they might even exist already. the weakness of USA system is really a marketing advantage for mexico, germany, israel.

as the potential of immunotherapy becomes clear, after all who wants to die a painful death, the frustration i have seen here that these therapies are not available i  the usa

my strategy was to start at the best, but its so expensive, mind you less than what most yanks get chaged in their system. the expense is because its out of your own pocket.

if i was in the usa and had say 50k to invest, i would always try germany first, the airfares are like a 1k, what counts is focused efective therapies. basically you got one shot at cure with a 50k budget.

if you got more money and time, that said if you like donkeys, tequila and nachos and had time ( not late stage 4 ) i would try the mexican clinics and see how you go.

the rgcc molecular profile tests for b17, not many colorectals have  a big response to b17, i aint met any so far that have claimed b17 therapy cured my mcrc, but i have not looked.

hugs,

pete

 

manwithnoname
Posts: 404
Joined: Jun 2012

def. has some interesting things going on but I have some problems with the DC vaccine, why aren't they using TLR 3, 7/8 agonists like immiquimod and Poly iclc? has anyone mentioned Sirolimus to generate T-memory cells? what about CLA for gamma delta? and why aren't they all using 2DG?

I have more questions...Tongue Out

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I have the best 10 immunotherapist in europe i meet at cimt, i will get answers, my life depends on it, as well as a few friends, in the mean time we do the best we can with what we got access to.

I have emailed dagmar, nesslehut is away till monday. are they doing gamma delta in isreal ? 

I am going to do 2DG, but I want to run it past kopic at hallwang first. I got to have at least one oncologist keep trak of what I am trying.

hugs always,

pete

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

Tony, CLA peeked my interest. do you have any links or more info on how it relates to gamma-delta cells?

manwithnoname
Posts: 404
Joined: Jun 2012
Miss Cindy L's picture
Miss Cindy L
Posts: 34
Joined: Dec 2011

Hi Pete thank you so much for your prompt reply...yes I have done the research and Mexico does offer dendtritic cell therapy. I will share a little more background ....I was diagnosed Stage 4 Colon Cancer in Jan 2012 after my resection surgery. Colonoscopy in Dec 2011 revealed mass in sigmoid colon. Since I have recieved no chemotherapy and am in amazing healthy shape. I put my butt right into the gym stared eating clean and began to build muscle lots of it. My Oncs are shocked how healthy I am for this level of disease. My instincts told me if I build muscle then cancer will loose the battle since both compete for the same nutrition. I have energy and bloodwork is perfect but my cea has been gradually rising. there is one spot on my liver that was dormant but has begun to grow one other spot has remained dormant. 2 spots on my lungs whic also are pretty dormant. I experience dull pain on my right side where my liver resides. The truth is chemotherapy scares me so much...I think it's because I watched my mother suffer for 5 yrs with no quality of life when she went under treatment for breast cancer when we were both young she was 40 yrs old I was a teenager. It traumaitized me forever because it was the treatment that wore her down not the cancer. She died of complications from the chemotherapy and was 70 lbs incoherent and in pain most of the time. I was her caretaker.   So I am on a mission to be proactive but take a different appraoch than my mother in fact I am doing everything opposite of what she did. This is why your posts intrigue me. I am also looking into TACE and want to discuss this with my Onc since he said I am not a candidate for liver resection due to my lung mets. Pete could you please share with me your experience with TACE procedure? How hard is the recovery?

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

The idea of the immune system being an important part of fighting any disease is not what is contraversial in your post.  It is how you express your feelings:

“so those who say the immune system has nothing to do with survival are just misguided fools who should really be quiet”

“those who dont believe greed has completely corrupted every aspect of our western health sytems are knaive in the extreme”

 

“its all about the money”

I will never understand why you are so angry with anyone who disagrees with your treatment of the moment.  You might get more folks on to your theories if you were to give up the attacks and deal with just the facts.

You talk about the cost of our western health care.  I don't think you will find anyone who disagrees with the idea that it is out of control, but what does your rant do about it?  Nothing.  To say that it "has completely corrupted every aspect " is untrue as are most statements which make sweeping allegations.  I know of many instances where a person would get no care at all if that were the case, instead they get a level of care comparable to the patient who can afford to pay.

 You say "its all about the money".  To compare your port removal with one done in the US is questionable unless you detail what the costs were for and the additional circumstances of both.  Even in the US, total costs for the same "procedure" can vary greatly depending on a lot of variables.  Your treatments have certainly been far beyond the financial reach of most of us.

According to a report by the World Cancer Research Fund published in 2011, the US had 300.2 deaths per 100,000 while Germany had 282.1.  More significant is that Spain had 241.4.  Does this mean that Spain has better treatments than either the US or Germany?  Maybe or maybe not as there are so many vairables which have to be included in any review of deaths.

It is time for you to stop stiring the pot, and get your posts more to the point...what treatments you are following and what are the results.  These side rants do nothing to encourage others to read what you are learning about. Your results will speak louder than any of the rest of it.

Marie who loves kitties

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

that most of us are happy to hear from Tedd and Ren and Tony (after an admittedly rocky start) when they discuss their alternative therapies and experiences in Germany and other countries.  Somehow they seem to be able to share information in a way that others can "hear" them.

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

tu

Delivery is so much a big part of communication...It's often difficult for me to read your posts Pete. I've read some of your blog too. The name calling is uncalled for especially when 99.999% of us want you (and everyone else) to succeed. I try to ignore the attacks and not take them personally but it's not easy. I believe if you were called what I've seen you call others you'd blow your cork.

beer

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

It's hard to ignore....but there seems to be some delight with this approach.

Frankly, as a reasonably educated man, who has survived 3x as long as Pete has, I can honestly use the words: Condescending &  Incindiary, with a tone that carries with it outright Indignation.   

The message I continue to get is that his cancer is deadlier and more important than anyone else's here....and his right to life seems to carry more importance than the rest of ours as well.

That doesn't sit with me too well.

Fool is a slur too, Pete...and you meant it in a derogatory manner aimed at us here...yet you claim you are a man of Christ...and yet, I do not see those principles in you, nor are they being demonstrated.  Your actions reflect anything but...

I've always maintained that it's never about the message itself - only the tone, with which it is delivered...

I wasn't going to post either, but it's the w/end and I've had enough with my own latest news....and didn't need to carry this around any longer....you try to ignore it, but it stays under your skin.

But, then again....I think that's the whole point.

You just never to seem to get it, Pete....and repeat and repeat the same mistakes...and you lose more credibility each time that you do it....and yet, you can't seem to help yourself in that area.

Folks have a long memory and are not as stupid as you make us out to be....

Personally, I think the folks have been more than kind...and have given you a lot of leeway....anything that has ever happened here, you've brought on yourself. 

Even your reply to me about what my onc had to say about TACE was slanted...you didn't really give a crap that I got my cancer back for the 4th time...only took the opportunity to needle me about that treatment, because of the discussion I had with my onc and shared.  

I know I've turned the other cheek towards you more than anyone else I've dealt with in my life...normally, I'd cut someone off like that at the quick....I was hoping you'd change some and at least tone down the volume. 

You just seem to be angrier with each passing day. 

None of us should have to be used as your personal punching bag.

I've often found that folks in life who are blessed in monetary riches does not always equate to a better person.  If anything, it seems to make them boorish with a sense of entitlement that they feel transcends all others in their path.   It's an ugly trait and I've seen the same thing with an ex-friend of my wife's....same deal.

The money seems to make them feel superior to others, because they can use it on a whim and basically outbuy the other guy....which then leads to a false, powerful feeling.  And then they can be rude and step on others's feelings to make up for the inadequacies that are present in their own lives.

At least, that's been my experience from those I have learned from...

God says to walk HUMBLY, Pete....not proud or braggadocious... 

 One last thing....your constant harping that you've got the BEST medical team....and the BEST treatments....it's all a little off-putting. There are alot of new folks with us and your statements could be misconstrued and hurtful for those who are unable to pursue this type of approach.

Besides, the verdict is still way out on how successful or unsuccessful these treatments truly are....even one of the recent visitors had the guts to personally admit that the treatments did not work as described. 

The question you have to ask yourself is what happens when none of this works for you in the long run?  What then?  What about the folks you led astray should something tragic befall them based on your recommendations?

Can you live with that?

 

janderson1964
Posts: 2215
Joined: Oct 2011

Marie Phil and Craig are right. I agree with you about the immune system. If you look around you will see that most of western medical research is geared towards immunotherapies. I dont know why you have to keep putting people down here and act so superior to everyone here. Especially when the bottom line is you are no better off then most here. I wish you were better off because it would give more hope to many who are running out of hope.

As far as your port comment goes I have had 2 ports put in and removed over the past 7 years and it didnt cost me a dime. That is what insurance is for although I admit many are not as fortunate as I am to have such good insurance and the money they charge us/insurance companies is outrageous.

Sometimes I want to defend you but then you write a lost like this coming off as some great cancer savior that the rest of us must follow if we want to live. I dont know what prompted to be so condecending again. Every one has been real pleasent here lately.

You have heard the old saying "If you have nothing good to say don't say anything at all". You should think about that saying and take a good hard look at yourself before you post next time.

These are all good people here who didn' t deserve to get cancer or listen to your cr@p.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Many of us have expressed ourselves about Pete's conduct here and he simply will not change.  Even in the midst of a recurrence, so that just goes to show that nothing we say can make any difference.

Most people here have been nothing but kind, but that seems to be meaningless in this situation. I have truly, and with a lot of sadness come to believe that we are only important to Pete in so far as we reflect back his own image. We're nothing but mirrors and echo chambers to him.

I'm only continuing to comment on his threads because I feel that he may give a very poor impression to newcomers and I don't want them to believe that we are all in agreement with his way of expressing himself. I wish this board had more involved mods, as I suspect these issues should have been addressed a long time ago.

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

my frustration is caused by missed opportunity for better treatments, i  have read and will contemplate all your comments.... and post an update here  when i  have important news, i did dream of a job of being a saviour for a few, myself included. i still have that dream, but i might get the sack.

i wish everyone here the best from the nwest to the oldest and all in between. everyones life  is unique and valuable. i just share what i and trying and the results medically and emotionally on my blog. i will watch the movie anger management tonight, i need a laugh.

i will let this post finish here for my comment, enough been said, its a vent at the western system on my part not at individuals, but i can see how it comes across, so sorry again. german exprimental medicine is not perfect, has its limiations, is expensive and offers no guarantees. that said i am grateful for my results so far, i wish everyone here the best with regard to there treatment choice.

its anothet dawn , my first back at hallwang, i am goung for a run throygh the blackforest, maybe that will help me find some peace while i focus on therapies holistic and experimental to deal with recurrence 2. clearly the germans dont provide a warrantee alas. but what doctors do !

 

 

 

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

You have encouraged us to read your blog.

The day before you wrote the above response you wrote this there:

its really ok to be different, to be an outcast. I am an outcast on CSN now, I am actually quiet happy, as the conservatives often dominate, they spread fear about therapies they dont even have the balls to try. well i have tried almost all the colorectal experimental and alternative therapies. I trust my experience and that of my closest friends, the opinions of the couch potatoes are not even worth reading. let the hope stealers watch TV together, meanwhil the survvors will be out exercising, ,editating, sauning or having fun dancing or other pleasurable pursuits. life is simply to short and precious to waste it on hope stealers.
yes I am becoming a touch radical as I approach my 47th birthday.

Well, Pete, if you consider yourself an outcast from this site because some of us disagree with you or because we object to the tone of your communications, so be it.  As far as I know and remember, no one has tried to push you out.  We have only asked that you treat us and our opinions with respect. 

Marie who loves kitties

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

What's wrong with a little TV??

Downton Abbey, The Walking Dead, Arrested Development...entertainment is good for the spirit, imo.

In fact, this gives me an idea for a new thread.  I'm off!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

After reading that excerpt...guess everybody can decide for themselves...

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