Cea 3.8 and pet scan clear, post 3447 is my most important by far. "HOPE AT LAST"

he was clinical not inspirational and said he expects my cea to start to rise, he wants to open me up when I get back from germany, do the peritoecomy and do hipec to get any residual tumour and full chemo. He said to get an opinion from the german doctors regarding his advice.

he agreed with oncologist that getting my hernia repaired is trivial and riosky regarding inflamation and a potential disruption to the immune system.

he disagreed with the onc with respect of the cea, the said he thinks it will continue heading down to zero.

so both agreed with my plan to return to germany and get opinions regarding my care based on these unexpectedly good results.

so the underlining message from the surgeon is that i am not out of the woods and that some disease/tumour still exists.

protecting and enhancing my immune system and all that entails is still my top priority so more love, less stress, more exercise, more supplements.

I am going to keep my post germany routine going so I have seen cea drop from 48 on 12dec12 to 3.8 12jan13. this decrease could still be due to persistent removab memory t cell response, chemo embolisation ( lasts 3 months on treated large mets ) and dendritic vaccine ( with snail virus, newcastle virus disease mutated, and apotosis peptide ) response. These are the german therapies from the clinics. I have been doing gcmaf probiotic yogurt known as maf314 and exercise, sauna and qigong. 

When home I have been doing intra muscular injections thymus, artemisin/iron. iv c twice weekly, then supplements and supportitive meds.

I have some thoughts regarding my remarkable, amazing, miraclulous response.

1. hipec surgeon cea rise concern discounted as all his experience is with chemo crc patients with disabled immune systems. My immune system has not recently been disabled by chemo. my cea decrease has been due to immune system, in tandem with LOCALISED direct injected chemo. this is a huge point of difference, so my local hipec surgeons opinion while appreciated I discount. but will wait and see german medical opinions. but I get the message that I need to nail this disease and not take my eye off the ball. so no media, no distractions until I am NED 12 months. meditation, exercise, medical care in germany will continue as an insurance premium to guarantee no more recurrences. of course this is subject ot change depending on german opinions.
2. my response is due to my awesome health on arrival at the clinic ie no chemo 18 months. and 10 months of recurrence with no chemo, but lots of natural therapies. the removab therapy is very demanding, so commencing therapy as well as possible is essential. this wellness includes detox status re mercury toxicity, which while not perfect was much improved.
3. whatever response I have had is due to the capability of my immune system, its clear from the resonse that my tumour load has been visible to my immune system. now this means alot. and has lots of implications. I am worried that a few friends following in my treatment foots steps may not have the same results. my success i susepct is due to some extent due to my health starting therapies. this health reflects genetics, minerals, vitamins, muslce, liver detox capability, etc etc etc. I did the most detailed set of biometric test from metametrix days before leaving fro germany. these will reveal valuable details regarding the secrets of my success. ie lets say peak levels all blood metrics, hormones etc etc etc may contribute to the extent of the result.
4. the rational here is before commencing removab therapy hallwang and I would not do it anywhere else ( to dangerous and the others don't have clinical experience ) I would achieve as optimum health in all respects my an intensive naturopathic/complementary health regime. 
5. I am suggesting that trying to emulate my succes by following some key points is worthwhile.
6. at hallwang clinic I went of all my supplements and except mcp and broccoli sprout powder ( i am emtionally attached to these ) After a few weeks I started map314 gcmaf probiotic yogurt.
7. With what I know now I would start massive mushroom therapy to boost immune system, but this is contentious between clinics.
8. my suggestions are just reflections for myself alone, all patients get an individualised program thats essential. heck you may get into remission faster, but I doubt it, my response is the best they have had so far. but maybe you will. so why was my response so good. oh its just luck!!!! well I think not, and I will review my results, all my tests and ponder any insights, and share them here.
9. I have many ask me already about what I have done in detail. I have decided not to summarise, I say look up my blog, lookup my posts and you'll see how impossible it is for me to get into my clinical details. I think its kind of tempting fate, we all deserve to be treated on our merits. nothing that I did prior to germany cuased the success I had with respect of cea falls, but it helped me be ready for the therapies.
10. I have the greatest appreciation for my oncologist doctor asir kopic of the hallwang clinic and if you have the financial capacity then I recommend him. I am back to his care of the 4th feb, I am grateful to him.

So the joy has not worn off, it never will, my health success is the greatest achievement of my life. I have friends following in my foot steps and I am praying they have better success. Its their choice, they make freely, I have not recommended any therapy to anyone. Read my blog and posts here. If I had followed my oncologists advice, my surgeons advice I would not have this excellent result and my excellent health. 

I followed my own judgement, my own research in preference to my doctors. Heal thyself or something to that extent, so trust your gut. so doctors, but until you raise the level of your care, the responsibility will always rest with the patient to take responsibility. Having a wide circle of opinions, often many different has ultimately been good for me.

This is just one story, my story. I don't want to cause any of my friends here therapy stress, or to question your treatment. If you already have started on an established chemo program its possible your immune system has been damaged and my results may not be possible. I almost died on removab, I was almost run off the road on the autobarn doing 240 km/hour. so the german therapies have risks, are costly but may benefit some. If this causes anyone any stress I am sorry, but the possibility of helping some achieve longer remissions, maybe even chemo free cures of our "incurable disease" well its worth sharing.

I love you all and hope this helps some, sorry for the speling and grammer. goto take my imi shots, supplements, do my prayers and sleep.

thanks again for all the kind words, all my thousands of hours of posts and research has been worth, even to save one life, my own, just one other is a bonus. my mate pete has already gone to hallwang, we are  doing a talk at the local cancer meditation support group. spreading joy and hope is something I can do, as its good for my soul and prognosis. its a win / win.

lots of love,

heaps of hope

and huge hugs,

Pete

ps remember self directed change is the key to healing yourself

tanstaafl said:

long term

Pete, that's really great progress.  I hope you continue to hammer at the tumors and drive your CEA through the floor, with a long series of low(er) CEA.  It takes several CEA readings to establish a solid trend.  I think a lot about others'  [high] "normal range CEA" that turned out to be incomplete and only a temporary nadir after stopping out six months.   One advantage with less toxic treatments is that you can do them continuously and longer term.

You've spent a wad. Since you are potentially a long term customer, surely they can give lower maintenance prices.  Especially if you are the their prize example.  You have already paid your R&D share in the initial treatments.  This is a twisty, life long marathon, financially too.

the wad is about 120K, the book is here for free for all in the messy blog, every treatment been shared as it happened.

i got a very kind treatment price even before this result even came out, all the doctors admired my approach and commitment as well as clinic management. I asked for a 12 month price and now I have asked for a job while getting maintenance therapy. My smiling face and positive attitude and apparent health while "terminally ill" seemed to help raise many in the clinics spirits patients and staff.

Its crazy that a smiling ill patient is good medicine, but I really think its true. why we have to pay for a smile, well thats crazy.

even the surgeon today, could barely crack a smile, neither could the onc yesterday. I think the constant stream of suffering and death as really killed the smiles in most of our doctors. so they fail to inspire, they fail to give hope. their goes a part of our immune system. my german oncologist doctor kopic smiles, he pats me on the back, we workout at the same german gym. he is a good man. he is over the moon with my result. the aussie doctors could barely crack a smile. 

they could not even say well done, not an ounce of appreciation for me taking the time to educate them about a range of therapies they know little about. professional arrogance again and again. so a possible cure just walks in the doctor, for the disease that kills most of their patients and they don't ask details. that right. My friends here know all the treatments, if my doctors want the answers well they can read my blog and posts. they cannot be bothered and thats why so many friends will pass away.

you know I begged my aussie doctors for my tumour her2 receptor status while in germany, got no answers. yesterday well it was possible, one call to the tumour tissue lab. the delay was pathetic, but demonstrated medical communication issues. its hard running medical care in two different countries, but that what it takes to get the best care. its alot of work and some extra stress.

I was not going to die in a chemo chair in sydney but under a tree in the black forest in germany. now who knows where.

the irony about money is the cost of these therapies is about what most pay for conventional, especially given palliative surgery and care costs, its just they are not covered by insurance and or government. I  am sure my possible cure will save my goverment lots.

your point about high range CEA was exactly the same point the surgeon made.

the key issue here is the new tumour growth that may not have been infected with newcastle virus disease. 

regular followup vaccines back in germany and another removab hit is what I expect, but I will wait to be advised.

sorry for the long winded answr, but I am getting all these thoughts out of my head, so I can get down the beach and relax.

thank you for all your great advice and knowledge and answers and care. you have been a constant inspiration to me and many.

hugs,

Pete

pete43lost_at_sea

 

Posts: 15

Joined: Tue Mar 29, 2011 6:26 am

Coppercent said:

Congratulations

I have watched your journey and have always been impressed with your fighting spirit! Enjoy your family!

 

we all got great fighting spirits, i just tried it a different way and have been blessed.

the media has started, i wonder how far and how fast my little survival story will go this time.

i hope its bigger than the last one.

all the media, whatever money i get will go to the cancer survivors network as long as its channelled to colorectal patients going to germany.

money should not stop us trying these therapies, if thats what the patient wants.

being healthy in mind , body and spirit will be conditions of the grant and genuine financial hardship.

so starting dieting, exercising and meditating if you want a crack at this fund and these therapies.

this is just an idea, i might as well thank csn staff and management.

how ironic, the cancer survivors network is the most important part of our cure and we never even knew it.

emotional support is more important than medical support, especially when we are trying to implement self directed change.

my inconvenient truth, i wonder if gore will sue me for using a part of his title.

if csn pulls all my posts, you know the conspiracy theory was correct, i think thats unlikely.

I am not pursuing any media, but they have started approaching me. if my story has media value then why not get a messgae of hope out there.

hugs,

Pete