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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

 

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i appreciate your posts. even tho i will not be able to go to germany, i love hearing about your experiences there. keep on posting! glad to hear you are better!!!

hugs

judy

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

always lots of hugs. our lord works in strange ways. faith is the key. i was thinking of you when I did my speech at the healing mass.

pete

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thank you for thinking of me. when i read your post to me i was deeply touched & cried.

hugs

judy

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

Flaunt your success my friend, you have worked very hard to achieve it.  Congratulations!!

 

Tina

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

Flaunt your success my friend, you have worked very hard to achieve it.  Congratulations!!

 

Tina

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

I think I have emotionally processed the flaunt issue. Somehow I share my success in the context of our suffering day by day.

You know I don't look inside most of the posts anymore, unless its a close friend or a topic I am passionate about. which is most areas of being healthy.

I have not been wrong about most of crazy therapies. think about it, all those therapies over two years, and now my remission using the best targetted chemo and the best immunotherapies i had access to. and of course the healthy lifestyle.

I had to try all the crazy things at home and fail, before I could have the desperation to take off to america and then to germany.

so in a way all the crazy therapies have had a role and have added value. so maybe they are not so crazy.

hugs,

Pete

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

Pete, you should put up a detailed protocol to document everything you did and tried just before and during your Germany treatment. Your success could be due to some non standard german treatment u requested, supplements you were taking, or something seemingly trivial.

lilacbrroller's picture
lilacbrroller
Posts: 284
Joined: Jun 2012

Hey, Pete.  No issues from me about your posts. I appreciate them and don't see it as flaunting. To me it's information sharing, and each of us on this board is at a different stage, Some are new to chemo and are apprehensive, some are between treatments, for some the therapies are going well, for others they are not, and still others are in the NED club and are here to help others or talk about things with people who understand, 

I have a question about your vaccine, though. Why dont you just have to get one of them? Why so many? Will you have to have them forever, or will you finish a course and then you're done for life, or 10 years (like most adult vaccines)? 

 

- Karin

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

the dendtritic cells only last a month, then they retire to the lymp nodes. that how it was explained to me.

I will at some point some have a much more detailed explanantion.

my current plan is monthly vaccines until NED and CEA/CA199/TKTL1  =  zero and a few others

when all indications of measurable malgnancy are gone, i will switch to quarterly vaccine shots.

with every vaccine shot they tweak the vaccine, they tweak/tune your immune system.

In my book, i am writing a chapter on getting ready for the vaccine process.

each vaccine is hand made, and tailored to kill your tumours. thats why its expensive. its about as personalised as you can get.

doctor N mentioned about 1 in 10 of his patients have my repsonse or similar. I am blessed, i pray it continues.

hugs,

Pete

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

As always, congrats on your success, but 1 in 10 doesn't sound very promising to me.  Why do 90% not respond well to the same therapy you are taking?  You have also mentioned that Vogel said your response was like 1 in 40, right?  Again, why don't the other 95+% respond if his therapy is so far ahead of conventional medicine.  I'm guessing the positive reponse to standard chemo therapy is waaaay higher than <5 to 10% or they wouldn't allow it.  Not trying to rain on your parade, but I wonder abouth the 9-39 people that are paying thousands of dollars for the same treatments, but not getting much response.  Until the percentages get a lot higher, I don't think you are onto a cure for colon cancer.

 

Edited to add that I don't want this to come across as negative, just am surprised at the admitted low percentage of success by the German doctors.  I really wish they would do some clinical trials with these therapies, as that is the only way they will get these therapies accepted by the general medical profession, and also they would then be available worldwide to cancer patients.

Tedd

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

dear ted and all,

thanks for following my story and i know you are seriously considering it.

your comments are not negative, they are realistic and represent the conclusions of most.

you have forgot or maybe have not seen it, its the pete factor, its my regime, its my approach.

most importantly i thinks its the synergy of hallwang with removab, vogel with tace, and nesslehut with NDV and dendritic cell and of course qigong and my regime.

I am writing the book, if i die, noone will buy it. if i live well yes some will. if those who follow me live , it will be the best seller on ebay in under a year from todays date.

my success is at finding the doctors with relevant clinical expertese, and leveraging that clinical expertese using my knowledge of our illness and the immune system and health.

my gravest concern for you and all chemo based stage4 is that my success is not possible for you, your chemo precludes your long term cure by disabling your immune system. in a sense you are trapped now with a dysfunctional immune system and a dependency of chemo to keep your tumours under control.

i have said this before, indirectly. but i make this unpopular, unplatable reality clear hear now.

the best life saving decision my oncologist ever did, was refuse me chemo when i begged for it 14 months ago at the beginning of my recurrence. HOW IRONIC.

i am so lucky and grateful. onc's don't issue chemo on a marker, they need a scan to confirm. the scan result took 10 months to arrive. you have followed all those interesting alternative therapies i tried during that period. 

i was still the healthiest stage 4 , chemo free colorectal cancer patietn to skip down the co-oridoor at the hallwang clinic into the infusion room. my superior health meant i coped with removab and retained my health quickly. i had a very heavy accelerated therapy cycle. see the medical report on the blog.

ted, if you come, or others, i will be here in germany offering support. if you or ren, or anyone else achives their own miracle that will be the best news for you and us all.

in a nutshell its with synery of the medical expertese, the therapies and me. if you are seriously interested start ahcc today, and learn qigong and meditation and yoga. we got to look real good when you go to the sauna. besides a few scars and missing bits.

hugs,

pete

ps hallwang suggested low dose xeloda over xmas, nesslehut said no NOWAY. i believed nesslehut's no chemo, as he is one of the worlds experts on the immune system. i went with my gut, it was an easy decision. that decision has implications for you and all my friends here on chemo. thats the reality of my understadning, i wish it were not so.

i have contemplated strategies for cutting over sick stage 4 chemos onto an immunotherapy program, it will be so intense with no guaranteees. those who are up for it, well i am here.

 PPS TOGETHER WE CAN CHANGE THE WORLD, WE MIGHT JUST LIVE TO ENJOY IY!

please read the study 10 times, its a very good way to go my friend, the science and the arguments compelling. in am interested in your analysis and comment.

 https://docs.google.com/file/d/1RwNF6_dmF1vcHuiYjPZ9ywyG8X-dSfWLW6A9GqjNeOvfK2Kj7a4tsEdV3jy8/edit

 see above the synergy of local avastin using tace and how it cooperates , synergises with immunotherapies removab, dendtritic and gcmaf.

i have a potentially curative way that avoids surgergy. the key point is if you got the money, you can try, it will take 3 months and you will know.

each  monly vogel you get an mri.

AS AN EXAMPLE OF MY ROLE this arvo in am studying my masses of research and records. i reread the ndv clinical guidelines. ndv causes swelling of the lymph nodes.

now on 14dec12 at vogel session 3, he said your lymph nodes are enlarged. suspecting cancer spread he embolised lymph nodes and liver.

but ted, with benefit of review and analysis, and in the light of my excellent result and the side effects of ndv and the clear result of the pet on that day

now its more likely the enlarged lymph nodes near my liver identified on 14dec were a result of vaccine and ndv effectiveness. my german pet that morning was clear.

this personal proof that vaccin and ndv works also.

my success so far has been the combination of immunotherapies. of course my will to live caused this to happen. if i was not me, i would be at home sick in sydney sucking down chemo with a different path before me. I am so blessed, i am proud and love my german path. It attitude that saves, not the therapies. without the attitude you don't find the therapies. to help encourage a survivors attitude i posted "the race" earlier.

 

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

its just i have been so blessed so far, the odds were the doctors opinions, but i did push for them.

look, they get heaps of good results, some better and a few excellent, mine was exceptional.

the money they charge is reasonable in my opinion. see what dr chang in new york charges for each vaccine.

http://www.cancercenter.com/liver-cancer/chemoembolization.cfm

just for fun see how much these guys charge in the usa. ask them what drugs they would use.

see if they use local avastin.

hugs,

pete

lilacbrroller's picture
lilacbrroller
Posts: 284
Joined: Jun 2012

that is fascinating (ie dendritic cells lasting a month.)  thanks

vinaykumar
Posts: 66
Joined: Dec 2012

do you get fever as a response to this vaccine? wondering how is the efficiency of DC vaccine measured?

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

not the vaccine itself, but some inflamation is possible at the injection site.

the fever you get from newcastle virus disease, which is an integral part of the vaccination process.

how is effectiveness measured ? scans, pet, mri, ct, ultrasound  combined with markers. and of course paitent feedback, how they feel.

the vaccination manufacturing process can be tuned and adjusted, if the first was not efficious. 

its possible to have stable disease, reducing disease or escalating disease. hopefully reducing.

now i am looking for mri results and lymph node swelling. i have found many tips and tricks to assess the effectiveness of all these therapies.

as an example we are doing an extra cea marker 2 days post vaccination to see if we can see a spike, if i can see patterns in me behaviour, well it might

be worth repeating for others.

beyond what the doctors do in isolation. even these clinics are so specialised. basically the patient has to step back and look at the big picture, and own all the key clinical decisions.

hugs,

Pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pete,  again I'm confused......are you taking metformin and celebrex too   along with these therapies.      Besides the chemo. shots,  the immune vaccine,  what exactly are you taking??   Are you taking tagamet still??      I'm just curious,  all these drugs have side effects,  I just know with my oncologist  he debates long and hard before he'll consider adding something to the mix because if things are going well he doesn't want to throw things off balance.  I'm on lovenox and folfiri,  he did his own searching before he'd give me tagamet.     He  thought long and hard before he would add  avastin into the mix just because it could cause side effects (we all know what those can be)   ...... I would think if I asked him to add celebrex into the mix  he would probably consider that waaay to risky and it may cause more harm than good.  I gotta wonder about doc's that will give you whatever it is you are asking them for and not give some serious consideration as to how it may affect you in some other way.  I don't want to come across as critical,  you seem to be getting a good response from what you are doing,  those are just the questions that come to mind when I see your posts.   I know  someone who is on metformin for diabetes,  he simply took some tylenol cold and flu  and  his liver  kidneys etc. started to shut down because of a mix of two drugs....it almost killed him.

manwithnoname
Posts: 393
Joined: Jun 2012

"if things are going well he doesn't want to throw things off balance"  good attitude, but it's when things aren't going well that huge descisions are made.

"Eight drugs (vincristine [VCR], hydroxyurea, procarbazine, CCNU, cisplatin, cytosine arabinoside [Ara-C] high-dose methylprednisolone, and either cyclophosphamide or dacarbazine) were administered within 12 hours in an attempt to minimize myelosuppression"

This was a protocol given to children with relapsed brain tumors, no one knew what effect the combination would have, it just seemed 'resonable' to try it anyway (given the future of the kids)

Sometimes it gets to a point where you have nothing to lose, personally I believe this was a bizarre protocol and it was used many many times all over the world, still, some children benefited... "50% had an objective tumor response including 15.5% who had a complete response (CR)"  

If Dr's and patients didn't take risks then nothing would progress IMHO

smokeyjoe
Posts: 1428
Joined: Feb 2011

Yeah,  some protocols seem completely bizzarre when I see what they are giving to some children with cancer .... the mustard gas ones in particular come to mind!!!   Scarey scarey stuff.     I had a family member (not a child) pass away from brain cancer, surgery was not an option.     I'm not posting to be critical of what Pete is doing,  I'm just sooooooo confused as he brings up all these things....and I don't know if he's taking them,  just talking about them,   thinking about taking them.    A simple list of what he does take and how many mgs  would clear up my questions.   

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

alas i have taken almost everything i discuss, iam typing still, it must be another miracle.

see my blog for immunotherapy.

i have been off cimetidine for a few weeks.

re celebrex, google navy protocol, i thinks its mentioned on my blog also.

hugs,

pete

manwithnoname
Posts: 393
Joined: Jun 2012

A simple list of what he does take and how many mgs  would clear up my questions. "

I'm guessing a lot of people are also wondering that, me included, Pete keeps changing stuff so fastFoot in Mouth  although I suspect there is a core 'protocol' I'm also wondering what his Doc's think of the added medications, ours is very cautious but if I present a good case he will include it, after all we have everything to gain...

Our Profressor said 'what we are doing has never been done and probably will never be done again' I think it's the same with Pete, we are all individuals and react differently, we just have 'faith' that it's is the right treatment.

No time for double blind random placebo trials....

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

my gut health drives all the decisions.

now today i got shoved back on cimetidine, it suppresses stomach acid, can cause the villi to atrophy.

my supplements are now are of my evolving health. if i work out hard i have some map.

if a skip a meal i have some map.

if i do weights i have a protien shake and aminos.

today i am back on tallberg powders doc n and doc M suggestions, these lead into

my study with regard amino acids therapies and controlling mdsc issues.

i know my tregs are way to high, so whatever my therapies or life style interventions are , they have minimised the

the capacity of my treg cells to blunt the immune response eating my tumours.

how to i summarise todays 2 hours of consults with highly skilled cancer specialists. my video blog, thats how.

hugs,

pete

 

 

 

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

first metformin, celebrex and cimetidine breaky

dinner metformin and cimetidine 

got the scripts today, no issues, the few sides i will sort, after all i am fighting metastatic colorectal, who scared of the side effects, not me at all.

now the cancer cells, they are scary difficult little devils. if these off label uses help, then i am on them.

i just had the vaccine injected, these offlabels all designed to support its efficacy

next week i from i dca for 2 weeks. it sydnergies with metformin from memory.

i think i have tried almost every alternative cure ever made, and i am still smiling.

thanks for being concerned. of course get professional medical advice always.

hugs,

pete

manwithnoname
Posts: 393
Joined: Jun 2012

DCA synergises with MET,    "results in MDA-MB-468 breast cancer cells found that DCA could block the activation of AMPK by metformin"  not enough studies on this for sure, ask Dr.N what he thinks.

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

tony,

no point asking doc n about dca. he is not a fan of it( very tragic story i will not relay here). hallwang is. 

i will check this out, but can see dca being dropped as preserving metforimin dual role re glucose and the immune system a high priority in 

in my care plan. 

but can you see how i need a team with our expertese managing these interactions, the doctors themselves focus of there therapies.

alas i am my holistic doctor stepping back, looking at the big picture between these clinics, and getting essential, life saving support from a few very very clever friends.

 

i am so glad i did my gcmaf experiment, you found me, now ren. if i was not searching and trying i would not have found such excellent sources of technical knowledge.

almost everyday what you or tans or into the future ren will shape our understanding of cutting edge therapies. why not leverage every single resource possible in the impossible quest, that actually may not be incurable.

now your research in dc, is second to none. what we discuss even leaves that naturopath at nesslehuts in the dark, and she is real good. i skyped my danish doctor mikael. the gcmaf supplier. i am going to start gcmaf injections if i can get doc n ok. he had some very interesting comments about imiquimod.

hugs,

pete

 

manwithnoname
Posts: 393
Joined: Jun 2012

Im still finding ways to increase the efficacy of the DC vaccine, Im 100% sure adding GM-csf, Poly-ICLC and Imiquimod into the equation will double the immune response, the vaccines cost too much not to get max benefit out of them, our Dr. is unsure, Im not, I will end up signing papers to allow it.

The other piece in the puzzle is immune suppresors, Imc's MDSC's and T-reg, the retinoid family (vitamin A) is coming up again and again, this differentiates cells and also kills cancer stem cells.

The amino acid's are crucial too, and most people, including Dr's, think nothing of them.

p.s Im glad I found your Gc-maf experiment, I have learnt a lot from your path and the board. Wink

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

so per doc n,

the cell receptors for the Imiquimod are on the inside of the immune cells, not the outside, the trick is to attach the molecule to glucose to get it absorbed inside the target dc cell. he talked about it, its on the video, but no clear suggestion even for me to take it. it was a suitable topic for discussion, he is amazed at what i know, but he does not know my friends. now even when i read the standard imiquimod trial about the rats you suggested months ago, well i read it, note its claimed role in reducing treg numbers systemically. alas only in mice and rats. but you know i am part rat and mice now.

so we have an intracellular response and an extra cellular response that ( this one interesting re the systemic treg reductions ). what interesting science.

what you are trying is commendable reasonable but alas untested and uncertain. except doc n was actually rubbing imiquimod on his forehead. so it must be ok. you know i like the gamma delta option i think the offering the best hope for those with tumours to resolve promptly so that a slower more constant immune response can occur without the immune damaging side effects of tumour growth re tfn-alpha growth and its consequences. if i remember yesterdays lecture doc n. oh it was a consult or was it a lecture. maybe both.

faith is the key, i will see you soon i think somehow somewhere i hope.

hugs,

pete

ps i emailed doc n if i can try  GM-csf, Poly-ICLC and Imiquimod, we will see, i have serious treg issues to reduce. 

 

luvinlife2
Posts: 172
Joined: Jul 2012

My clinic in Canada uses a lot of German therapies and the cost is not anything close to what you are paying in Germany Pete.  The technicians and Dr.'s were trained by German Dr.'s either in Germany or here so the integritiy of the therapies is not compromised.  A number of tests such as CTC are sent to the German lab company that does this.  Fully body and local regional hyperthermia treatments are less than 1/3 of the cost in Germany but it's the same machine imported from there.  My clinic cannot offer chemotherapy with treatments because that is regulated by our public health system so they cannot have an onsite pharmacy that mixes the drugs.  However, they are able to administer chemo drugs if the patient brings them to the clinic.  Besides the price, that perhaps is the one big difference.  Additionally, there are some therapies that are not yet approved for use in Canada but I think it's minimal.

As far as Denditric Cell thereapy is concerned, some places in Canada have offered this in the past but my Dr. says that he doesn't know of anyone currently offering this therapy.  That doesn't mean that Canada has rejected the thereapy, in fact, to my surprise, quite the oppposite.  It turns out our research labs at the University of British Columbia are actively researching vaccine therapies.  Here's the link:

http://www.publicaffairs.ubc.ca/2012/02/05/ubc-researchers-discover-key-to-immune-cells-internal-guidance-system-could-lead-to-more-efficient-vaccines/

As it turns out, the professor who wrote the article and who heads the Dept. of Immunology and Micobiology happens to be a personal friend of mine so it goes without saying that I will be emailing Wilf and picking his brain about the vaccine.  I'll let you know if he tells me anything that hasn't already been posted here.

I guess what I'm trying to say is that it doesn't have to cost $120,000.00 to get a lot of these treatments and you don't necessarily have to go to Germany.  The German clinics have trained Dr.'s from many different countries in Europe and now Canada, in their therapies.  There are already a lot of private clinics in Canada and the US that offer the same or similar type of immunotherapy treatments with respect to IV vitamins, nutrition etc. 

I think what you are doing Pete is great and I thank you for all the info you post here.  I just want folks to know that there are other options for getting a lot of the same treatments.  Also, it should be mentioned that quite a few of the German treatments are intended to work in conjunction with chemotherapy for optimal results.  This doesn't mean they are not effective without chemo.  Many patients at my clinic great results without chemotherapy but it takes longer, so is more expensive.  One last thing.... I've seen too many patients try these therapies when their cancer is already out of control and their bodies are weakened by chemotherapy.  For these people, the treatments help with quality of life only.   Pretty much anyone I've met at this stage of their disease has passed away. 

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

its a really great answer, and maybe a more cost effective option for some our american friends.

i am glad your clinic has many of the german therapies available, and i know they help some.

its just the level of expertese at hallwang with removab and infusions, its the synergy of hallwang, duderstadt and dr vogel that helped me.

the first few following my path, will make or break it. it will be an interesting next few months, better than tv shows like csi, this is real life drama.

good point about really late stage not responding well.

well its arguable about mixing these german therapies with systemic chemo, you know my beliefs, i won't repeat them for upsetting my friends here.

we make our decisions , place our trust and hope. i guess thats all any of us can do. who we trust and listen to, well that important.

hugs,

pete

luvinlife2
Posts: 172
Joined: Jul 2012

That is one drug not available here.  I think the one advantage of going to Germany to do the treatment plan is that everything is focused around your treatment plan and your entire life for that time is completely about getting well again.  No other distractions.   I can do my treatments here in Canada but I go home to the regular routine and stresses of life.  Everyone I've talked to has returned with positive stories about the clinics there.  Keep smiling Pete  Smile

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

I believe it is in clinical trials here in the States.  People who are interested in trying it and can't afford to go to Germany, might want to check out what's available.  AA

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