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getting NED, staying NED and not DEAD

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

I saw two naturopaths today and had some very heavy discussions around NED and leaving the german therapies at the optimum time.

The question " when will my body be strong enough to go supplement free and stay NED ? is this possible or two risky ?"

 

So I have a new focus for the upcoming round of german clinic visits, it centers around NEDness and how to keep it.

ie healthy long NED, so I am interested in others strategies for this worthwhile goal.

I have noticed many here are NED for a bit and then a problem.

in the chemo world, do you stay on chemo while NED.

when does your chemo stop, after a month of NED ?

Using the holistic immunotherapy model, the NED transition plan I am developing for me, will likely be guided by lots of different blood tests and comments from clinic top doctors re my immune system and general health.

being clear of toxic metals and having a significant increase in white blood cells to facilitate storage on frozen ice of 30 vaccine shots is important.

so what about you mates, what are your strategies for staying NED, getting NED ?

hugs,

Pete

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Your first statement shows real growth...I feel like a proud papa:)

"The question " when will my body be strong enough to go supplement free and stay NED ? is this possible or two risky ?"

Pete, I think you've reached the stage to where you need to start studying my case and my philosophy.  Because, I think my case is showing us another side to this equation - and it can no longer be overlooked or ignored...I'm serious. 

I can't say how long NED lasts...no matter what we've done.  I can tell you this though. 

1.  You know that I'm 19-months out now...and clear. 

2.  I've gone the longest time in a remissive state than at any other time in my 8.6 journey (think about that one really hard)

3  I've taken ZERO supplements the whole time I was in my last fight...and nada for the following 19-months.  (scan 2 months away)

4. With my dad's situation all of last year....we slept very little...ate poorly if at all...stress and cortisone release at an all-time high for me.

All of these factors converged to create The Perfect Storm…if March shows clear, and cancer is not present, then we’ll know more about how cancer operates.  If cancer doesn’t come back after last year’s fiasco…perhaps, it never will.

 

Let’s move onto your next question…in fact, let’s combine your last two questions…

 

“in the chemo world, do you stay on chemo while NED?”

“when does your chemo stop, after a month of NED?”

It stops the moment I do my last treatment, Pete.  My theory is that cancer is like a train ride…”You get on and ride it – until it’s time to get off.”

 

I’ve done enough chemo…I lost count after 51x…some do it more…and do very well with it….I don’t….my renal system has been compromised with metal toxicity from Oxy, as well as Irinotecan, which is known to cause renal damage.

 

Oxy was manageable, but Irinotecan was a living death sentence for me.…every day, all day, I was sicker than I’d ever been…zero quality of life…

 

I could do Xeloda again or go back 5-fu…but without a target…what exactly am I aiming for?

 

Do we realistically think we’re going to eliminate every single cancer in the body?  One centimeter of tumor equates to a billion cancer cells, Pete…..now times that by a 6-8 cm tumor….that’s 6-8 billion cancer cells.

 

Just swishing some chemo around the body hoping to catch that rogue cell or two does not make much practical sense.  But, this is what you begin to realize when you understand that you have to play for the long haul…and not the short term fix.

 

Ask yourself the question, Pete….”Why does Craig seem to be doing so well?” 

 

With all I’ve been through, Pete…and not panicking into trying anything to keep me that way…because, I don’t truly think that there is any kind of preventive to really take that is going to stifle cancer.  And the more we ingest…the more we have to process…the harder the liver has to work to detoxify...even for the supplements.

 

The body needs some time to rest and recover…we can't just keep pounding on it over and over non-stop...we have to be like guerilla fighters....we attack....we step back and assess...and then fight again...if we happen recur, we’re on it…and then we deal with it.  Cancer is just so very hard to get out in front of. 

 

And I’ve got another theory that I’m waiting to tell you about in March…if I stay clear…you don’t want to miss that one.

 

I may recur again for the 4th time at some point, Pete…in fact, I expect to…how could I not?

 

But if supplements bought me a few extra months before I recurred, where does that leave us?  It either is..or it isn’t.  That’s why I don’t panic anymore or run scared that I’m missing out on something. 

 

Other stuff I’ll tell you about too as the days pass…just waiting for the right moments…

 

A lot of times, I think we can overthink this…I get that.  I started out like everyone trying to change this or try that….and my experiences and that of others, have redefined the path that I’m currently marching along on. 

 

“Time Will Tell.”  LOL!

 

I want to show that you don’t have to really do anything to stay clear…once you get clear. It’s just a theory, but one I’m beginning to believe stronger in every day…March will tell me if I still see it that way or not.  

 

Now, when you see Dr. Vogel again, tell him to put that in his pipe – and smoke it:)

 

Pete, I’ll close by saying that it does make me happy to at least see some kind of a shift in your attitudes…if you’re not careful, you’re going to end up beside me on the Path of Enlightenment.

 

Not a bad place to be either…

 

Real growth comes from the examination of ourselves…the fact that you are trying to find other avenues where you are not on some kind of maintenance, is in my mind, a very healthy one.

 

We’ve got to break free at some point….if our health condition allows us this option.

 

It was Kenny Rogers “The Gambler”, who told us all that we had to know when to hold ‘em – and when to fold ‘em. 

 

All in all, Pete…you would have to say that in year 8.6…with cancer 3x…multiple treatments and surgeries….no mop ups of any kind (preventive)...no supplemention this last round...and no fear from not doing so...that something is going on…my body is responding positively (to date).

 

Part of the answer ties into the immune system of course…and you’re gonna’ love why I think it’s the immune system now.

 

Stick around…

 

Good luck, mate.

 

Time is going to change you, Pete...and I hope I'm here to see it all unfold.

 

-Craig

 

 

 

 

 

 

 

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

All I can say is continued good luck to both of you on whatever approached you take to deal with this cancer, but one successful case doesn't really prove anything.  No one, including the best oncs and surgeons in the world, really knows exactly why some people do better or survive longer than others with similar stage of disease.  Even with something as well studied as traditional chemo, you still see people that do great on one regimen (like FOLFOX), yet for another person it doesn't work at all (but maybe FOLFIRI does work for them).  As a trained scientist, anecdotal evidence from a single patient really means nothing for somebody else.  Our cancers are unfortunately as unique as we are....

 

Tedd 

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

completely disgree but wish you all the best.

thanks for kind wishes for our ned going forward.

i am the first real example of immunotherapy defeating stage 4 colorectal here. it proves everything to me, a few friends are coming to try my  path of saunas, babes and music.

oh and the cutting edge effective german therapies.

i am a persistent innovator, my therapies could offer cure for many.

hugs,

pete

forever16's picture
forever16
Posts: 3
Joined: Feb 2013

I agree! Be strong inside, better diet (much more vegetabel and fruit, especially those with antioxdant and anti-cancer componenents; much less meat and sugar), exercise, active is a good therapy to help yourself fighting with cancer and prevent it from recurring. chemo is always toxin for your body. but to be safe, you do need it to shrink your un-welcome friend when it is necessary at the first hand.

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

Life Extension suggests long term use is a good idea.

re Craig: Surgery has been the major path to NED for most.  Depending on one's markers, a fair estimate can be made of the scope and severity of metastasic potential with a need for adjunctive treatments.  In some cases, supplements can make chemo more tolerable AND more effective.

With a set of negative (absent) markers, the damned mets can be cleaned out with surgery and/or some chemo for some stage IV cases.  With some untreated "bad" (positive) biomarkers, conventional chemo alone may be inadequate to stop the growth and spread of mets even starting at putative stage II, gone in a year or two in particularly bad cases.   Matsumoto's papers demonstrated that stage II patients with tumors stained by both  CA19-9 and CSLEX, may be pretty much like aggravated  stage IV (non)survivals without a cimetidine adjunct.  Likewise between COX2 inhibitors (lots of potential natural ones) and celecoxib, the COX2 or eNOS/iNOS biomarkers may be important.

If Craig wants to move away from being an uncomparable anecdote, sets of relevant tumor tissue biomarkers from pathology samples would help.

With Pete's vaccine, we hold our breath whether he's found something broad spectrum, durable and reasonably available.

 

   

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

How would I do this?

If there was something that might help, I'd love to publish it here.

If it didn't cost me alot of $$$...I'm a little light on that at the moment.

Since I currently can't afford another strategy at the moment, what I'm doing or not doing just has to work for me. I just don't have enough matches to fight a bigger fire.

What would I ask for or about, Tans?

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

Good post, tans.  They have done clinical studies with leukemia vaccines, and in 6 patients, 2 went into complete remission and 4 had no improvement.  Based on that, can we say that this leukemia vaccine is a cure?  Maybe for 2 out of 6 people, but what about the other 4.  Pete has foubnd something that worked FOR HIM, but there is absolutely no guarantee it will work for everyone.  With that said, I might take a shot at it myself if I can get the finances together.  Regarding cost, Pete's treatment has cost over $100k out of his pocket, according to his posts...

 

Tedd

annalexandria's picture
annalexandria
Posts: 2182
Joined: Oct 2011

I think it would be very difficult to replicate what you have done, Pete!  Looking over your blog, it seems like there were many different approaches involved in your treatment (including chemo),  so it seems you may remain the unique case that you've always been.  As for me, my "NED for now" is all because of surgery (and possibly some cimteidine).  AA

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pete,  I'm confused did you get chemo.  along with the immune therapy.    How long are they suggesting you continue on??

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

Based on Pete's posts here and on his blog, he did get chemo (not systemic, but targeted chemo embolization in his peritoneal cavity) along with the dendritic cell vaccine and Revomab in Germany, plus who knows what else exactly (dietary supplements, etc...).  It sounds like this clinic treats every case individually and differently, based on the patient's disease.

Tedd 

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

"re Craig: Surgery has been the major path to NED for most."

Tans, I know you probably don't follow many of my posts.....but I've ALWAYS said surgery is the #1 weapon in our arsenal...and what I believe is the absolute #1 thing that contributes to our longevity.

Surgery has been what has kept me on my feet this long...

Just wanted to clarify that.

-Craig

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

i love you all, especially craig.

i dont want to be a freak, i want this set of therapies to be workable.

i have landed frankfurt after 40 hour commute, just drove 300km and arrived duderstadt to start therapy 3pm.

i am superman, this healing itenary is full on.

per cindy today, the naturopath duderstadt, my response is very rare, shiiit.

my advice is become pete and survive ??????????????

i hope you know what i mean, its the approach as much as the therapies.

do your genetics first, then all the tests, then supplement your ass off, detox, pray , exercise etc etc.

provide an environment for the immunotherapies to kick ass.

this news sux "cindy said most chemos have much poorer results do 5 minutes research and you will know why. sorry to burst the bubble but but its bitter pill and if you 

dont know the damage you are doing to your bone marrow. that treatment regime, chemo basically precludes long term survival based on my research and anecdotes.

my my dam sad observations and reflections based on my story and the feedback at the clinics.

i am going to try and video blog every consult this trip, wish me luck.

dearest friends of course stick to chemo, its already your path, i got no answers for anyone.

i am overwelmed by these realisations and the mess we are all in with this illness that some say is incurable, i say its not but the cure maybe dam hard and tricky and unique.

i am still dreaming i get many other petes, i am pete1 i pray for pete2 to pete99. all cured, then we can do a retrospective case study and clinical trial.

i just want 99 longterm friends. screew reinventing the wheel, just do a majority of th stuff i tried as close as possible skip enemas in the surf and seacumber smoothies.

the rest well consider it.

if noone tries my recipe, thats cool thats life, maybe god wants me to be a freak. i hope not.

one of the best holist doctor in germany herzog emailed me directly, i am in with him also. like fleas jumping on a dog.

but its fantastic, i have the best medical holistic team money can buy, i'll video it all and share it here. this month will be exciting and healing.

so much on, i got to sleep.

six hours driving maybe another chemo embolisation, blood draws for vaccine, hyperthermia, newcastle virus disease. all in one day.

please please dont stress about my opinions, just get the best care you can, thats all any of us can do, and then pray it works and have faith in our own unique path.

hugs,

pete

 

luvinlife2
Posts: 172
Joined: Jul 2012

I wish for you Pete, long term NED that will change to CURED Smile  We are experiencing a lot of success at my clinic too, thanks to technology and knowledge brought over from Germany.  It's encouraging but...there's always the but...we have to always remember that everyone has a unique set of circumstances involved with their disease.  There is no "one size fits all" answer to cancer.  I sure wish there was.

You keep doing what you need to do for healing and I thank you for sharing your experiences.  I'm a believer in the route you have chosen as I am also with western and tcm practices.  Cancer is so complicated that it's worth checking everything out.  Knowledge is power.

Pete...you couldn't find a faster way to get to Germany?  40hrs sounds like you took the scenic route!  Laughing

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