rgcc molecular cancer stem cell profiling

no replies, interesting .....

my personal success is enough, maybe one or two brave souls will try my path maybe not. time will tell.

one day when every cancer patient is doing this test, we may look back at this test and wonder why the delay.

the simple answer is the conventional versus non conventional ie the hearde versus the loner.

which is best, well its a perosnal decision. no judgements, just observations, for me test enabled my german onc to give targetted chemo at the lowest dose and to come up witha plan using my mdr gene expressions.

smile veryone , its a beautiful day! We are all so different, I see this test as essential and others no. 

hugs,

Pete

Lovekitties said:

Dear Pete

I don't think you should take no replies as non-interest.  I can't speak for others, but even if I knew that doing this testing and then the experimental or off label therapies would save my life, I could not afford to do it.

Here in the US most of us are dependent on what are considered medically approved therapies because we need insurance to pay at least most of the costs.  When I was diagnosed I had NO insurance.  Fortunately, I have survived long enough to quality for Medicare and Supplemental insurance for any future approved expenses.

I think your financial situation is very unique among those who post here.  Some have insurance which carries the bulk of the financial load, while others are forced to near bankruptcy to get their treatments.  Even with insurance, many have to beg the insurance companies to approve tests and treatments if even the least little bit out of what they consider "the norm".

We are all happy for you Pete that you are able to do any and all things you feel will prolong your life and perhaps be a cure.  Once you find that "magic bullet" just make sure you lobby for all cancer patients to get it regardless of ability to pay!

Hugs,

Marie who loves kitties

 

dear marie,

your reply is so true and that why i am sad.

exactly the same issue here in australia.

not one onc or surgeon i have seen here will write up my success as a case study. i am still joyful at my german therapy results, but even sadder as i realise the delays and reluctance and skepticism of conventional medicine and current medical science adoption of new discoveries and innovation.

i visited my three cancer support groups last week, all kind wonderful people, many hugged me, some had been praying for me. not one has the means to follow in my steps.

i needed to meet them, hear their comments and answer questions. i cannot find one researcher or doctor in sydney who sees enough medical value in my success to publish my result.

just getting or encouraging a few other stage 4, to publish or blog results is all i can do. if we get a few more positive results here and on colonclub, we can start lobbying individually and as a community.

my german audii is empty at the moment, i leave my family in 7 daysfor continued therapy that i am eager to recommence. I am doing this part of the journey solo, I value everyones kindness and support. Maybe I will find some travelling companions when I am back, all the international cancer patients floating around the german clinics, well most of the ones i have met have become instant friends. we tell our stories to each other, we support each other as well as we can. why this rich saudi guy invited me to  his place in mocco and to go diving on his cruiser in the red sea. but that is another story.

i am smiling, i may have my cure, i have put in alot of time and effort to document my story and my personal success. i am dreaming op

the bottom line is this.

"if we as a colorectal community want a cure we can quietly wait for the medical system to deliver it or we can fight like hell as a team, until they put us all in the box, and even then we won't shut up, we can haunt the politicians. we all have networks, our families, friends and workmates, churchs, clubs. if somehow we could be organised and have well chosen targets"

I am so extreme, i am not the right person to lobby, i am just a guinea pig. a very lucky happy little oiker, who sees another sunrise, and its beautiful here. I am not having a mental breakdown, but can you imagine the let down I have had, after experiencing the trill of success to now see another summit on everest.

actually if my success so far is like climbing everest, well i am on the summit on my own, solo if you will. The cure is on top of everest. Its a cool and beautiful view, a clear sky and frozen tears fall down from the summit. I look through my tears, I see thousands , no millions of cancer patients that want to live and I wonder how many can climb to the top of their everest. I wonder if some will follow my track, and if indeed my track is a workable path, the best path.

we have to want something more effective than getting chemo every two weeks, as a community we need to be permissive rather than dismissive of the few paitents will to step outside conventional. the trailblazers prove what works, what does not. 

Somehow I had hoped my success could bring hope. maybe some, maybe even my result is false hope, in the sense that not one patients treatment will change, that not one oncologist on the planet will even think differently. that nothing changes in the presence of my miracle I think is our ultimate challenge. if the cure is in life style and the combinations it will stay unreachable, its completely clear to me now that our medical system will not deliver life style based therapies, supplement therapies or simple cost effective off label drugs to support us during our illness. let alone the experimental german therapies that have worked.

we have to respect the strenghs and limits of our medical systems and work around them. when you know the limits then you can step outside them if you want. when a few more a walking, doing qigong, doing saunas, having a real healthy diet, detoxing. etc etc these are the basics. This of course is done with your doctors blessing. 

as a community we can provide the strenght and support for us all to overcome this illness, even if that is just a peaceful passing but for some it may mean extended remission with the best quality and qantity of life we can manage, for some it may mean cure.

We have so often here talked about the tail club, those few stage 4 that get into longer term remission. 

how big is the tail club ? its much much bigger than what your oncologist thinks. Not one oncologist who specialises in stage 4 colorectal knows about my success and therapies. at the moment they don't care. maybe ask then about removab, chemo embolization and dendtritic cell vaccine. ask them can you help me try this first ? it worked for pete, its alot of fun. now this guy is sitting in a sauna in germany getting a tan and is ned. I promise to do full systemic chemo if I have no other options and the german style therapies don't work.

now think of the lives, the money , the suffering that we could save across the developed world. its staggering. It starts here, I believe, actually its started along time ago. its our responsibility to save our lives and to improve our health system. the best way to do this is save ourselves. i have to go do my exercises, sauna, enemas and qigong.

Its ironic, i am just as ignored, as i was before my result, my gratitude for my result is stll in every moment of my existence. my ego is smaller, the media did not coming running , except for one reporter from canada, which maybe exciting. as craig says time will tell. none from csn even emailed me to say wow. I guess they cannnot highlight non conventional therapy successes like mine. 

these are just my reflections and observations about my therapy success and the resultant mental and emotional turmoil thats resulted. 

hugs,

Pete

ps the ANSWER the colorectal tail club is INFINITE in my dreams. Whatever way we get there is great, membership is not free.

pps as I was writing this the rgcc test kit, arrived by dhl while typing this. my german onc dr kopic said not to do the test in an email last night, I am going ahead anyway. I am a testing jukie, I want the latest results to publish on my blog so I can see the difference in my ctc's over a 14 month period. without systemic chemo. I expect them to be the same or lower, i hope so, or say some onogentic expressions altered to a more favourable status. This maybe be due to targetted botanical and lifestyle.

My huntch is my avoidance of systemic chemo is a good prognostic indicator for heavy duty immune based therapies.

ppps I would expect other stage 4 doing annual rgcc test like this who are on chemo may see some changes due to the multi drug resistance between tests. these sorts of compariive results would be so valuable to us as a community. but its still patients clutching at straws and going to seminars to learn what our doctors don't know and even care about. someone said "patient health thy self" I wonder if he knew how hard and expensive that is in the 21st century. not just in money but in effort.

http://petertrayhurn.blogspot.com.au/2013/01/rgcc-arrived-from-greece.html  a photo of the rgcc test kit

ioanitsa said:

Molecular testing & Germany therapies

Good afternoon to everyone in the site God bless you all !!!

Pete, it is wonderfull what have you achieved finally I hope from now on everything goes to the right way for you and to enjoy yr life and yr family.

It is the 2nd time I am posting in this site but I watch all of yr posts daily and have taken courage from yr way of attacking to this beast, you have given me the strength to fight as a caregiver to my mama.

I am from Greece my mama has been diagnosed on Aug. 2012 with CRC multiple liver mets both lobes, she is 51 yrs old and I have been concentrated only to change the bad statistics for her.

Soon after her diagnosis I found all needed information from this forum and from Greek cancer forum.

Patients and caregivers in the Greek forum have concluded that what is needed to be done immy after diagnosis is a molecular testing of the tumor and travelling to Germany, for those, of course, which is affordable and it is essential not to lose so much time with only the standard therapy.

For the time being, my family has done nothing ftom the two, as my parents are confident to their doctor and the problem is that even if you make this test there is no oncologist in Greece to take the risk and do the chemo the the test will instruct, but you have to take the initiative to travel to Germany, start the therapy and when back in Greece to find an onc and instruct him to do whatever YOU want.

You understand that this is risky for the family and the onc.

Pete, I just want to confirm that we are talking abt the same test by which you take sample from the colon tumor and make the profile of the genes that it consists of (B-RAF, EGFR, K-RAS and many other) and which chemo other than the psoposed chemo for colon cancer will be helpful i.e. for some colon tumors the chemo designated for breast cancer or for pancreas will be effective and not the usual Folfox or Folfiri etc.

Do you mean the same testing?

For the records, this test here in Greece it costs euro 800 for the complete profiling which easily can be sent by courier, when only for the K-RAS we paid euro 170.

Pete, I also noticed some time in the past that you mentioned Dr. Herzorg, is it Dr. Herzorg Alexander from the clinic in Bad Salzhausen in Germany?

People who go to Germany go to his hospital and everyone is satisfied with him and I would like to have yr opinion if you know him.

My mama has finished the 1st cycle, she managed to complete only 4 chemos with FOLFOX+ Vectibix (Wild-type), then allergy, thus they shifted her to Oxaliplatin 2 times per month and Xeloda for 3 weeks.

We have done the CT scan last week and a colonoscopy where we found that some very small mets in the liver have been disappeared, the larger ones (max 3 cm) have been decreased abt 1 cm (only) and the tumor in the colon is also decreased almost half its size.

However, the chest CT scan showed that two lymph nodes around the heart and the lung have been increased by 1cm, for this reason we are going to have another CT scan afer two chemos in order to observe them.

Do you think that this is a good progress and that she'll manage to be operable in the future?

Thank you all for yr attention, yr opinion abt targeted therapies will be very helpful to us, we are new to this fight and I also have to fight my parents decision to be on the 'safe side' by their greek onc here (I hope you understand what I mean, English is not my mother language) and they don't want to travel to various hospitals.

 

Have an enjoyable and wonderful Friday!!!!!!!

Ioanna

 

 

 

 

 

 

 

 

 

 

 

i like that you are caring for your mum, we seem to have a common approach. I agree with many of the issues you raised are valid.

remember self directed change, if your mum is stressed by non conventional then you may undo her therapies.

only one herzog, he is good I hear. i went to one of his lectures, he is smart.

I think hallwangen clinic is what worked for me, so its my favourite.

Maybe get an opinion from hallwangen. A few opinions, the more the better.

checkout the specs on the 1900 euro rgcc test, if you can get the test for 800 let me know.

I'll fly into greece, deliver the blood myself and go for a cruise with the spare 1000 euro.

let me know how you get on and goodluck, if you decide on germany, PM me and we can goo for a sauna.

Oh, and about your mum's progress, consider this, the more you love her, the more you will have to respect her freedom to choose her medical care, even if goes against your beliefs and preferences for alternative therapies. You know my belief about what is best for me. I hope you and your mum have a peaceful relationship, reducing stress and living with love will always be more important than diet, supplements and chemo. Be gentle with your mum, colon cancer and facing our mortality is hard, no matter our age. I see an ironic similarity betwen what you want for your mum and what I believe is for my colorectal friends. all I feel I have the right to do is present my experience and the facts I reply on.

This is the key, if we, you or I push to hard we actually disempower the patient we are trying to save, they have to take responsibility for their health, if they do that, we have to respect their treatment choices. even if we disagree, even if it costs them their life. its theire life and there right to choose, no matter how painful.

From my experience, I would go to germany whether I was stage 1 or stage 4 on the fastest plane possible. I would rent a spaceship if I could get ther faster. You are right about time being important, but so is making considered decisions.

my very best wishes and prayers.

hugs,

Pete