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happy birthday tumour, rest in pieces, its my third anniversary today

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

yes 3 years ago to the day, I saw the blood in the toilet bowel.

still alive, still here and still fighting. and possibly causing trouble!

another great day ends, I wonder what tomorrow will bring!

hugs,

Pete

if your interested in my extreme therapies, ideas, newest research well have a have, if your conservative well I would not click on the link, you have been warned.

http://petertrayhurn.blogspot.com.au/2013/05/the-fourth-year-begins-big-wednesday.html

PhillieG's picture
PhillieG
Posts: 4673
Joined: May 2005

You're still wet behind the ears as they say. I'm at 9 years, 3 months, 4 days since my dx...but who's counting Laughing

Congrats Pete...may you surpass my record and then some...

janderson1964's picture
janderson1964
Posts: 1698
Joined: Oct 2011

I hope Pete surpasses your record. I plan to pass your record but we will never catch up to you since you are such a fighter and that's the way I want it.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Im so glad you are doing good. Three years is great but I pray this is just the early years. I will be four years next month but I'm still doing chemo but it is keeping me around.  Jeff

Annabelle41415's picture
Annabelle41415
Posts: 4310
Joined: Feb 2009

Never marked the day for me, but I'm glad that you are here three years later.  That is the most important part and that you are still in the fight to get to full health.  It's a scary thought I'm sure being there three years ago and look how far you have come and the strength that you have found in yourself that you probably never thought you had or the determination to fight for something so passionate as you have.  Glad you are here, three years later.

Hugs!  Kim

Chelsea71
Posts: 1170
Joined: Sep 2012

You and Steve share the same anniversary. He is only at number two. To me it seems like a lifetime ago. I hope you both have many more anniversaries.

Chelsea

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

poor ol phil, he will need a walking stick soon he has survived so long.

today was an unbelievable day because I met professor borodie who runs sydneys biggest colorectal center, the center for digestive diseases.

so yes on 3rd june 2010 I was diagnosed at around 3pm, I got the welcome to the crc club, at the same location, different doctor. I said hi, could not remember the name but he said he recognised the hole. sorry, thats really sick!

this old but very very wise clever, brilliant and kind doctor, is as sharp as me. within 10 minutes of our pre colonoscopy / endoscopy interview he had invited me to join a trial or a test using chemo nano particle delivery of yesy chemo agent using a polyfunctional antibody that uses p2x7 targetting technology to kill tumour cells.

so now I am having the worlds leading medicine at home in sydney, it only takes a few weeks to test. other people on the trial have died, so its not magical cure I have enjoyed so far. 

but I am excited by co-incidence, on almost the same day as I was diagnosed, I am offered a therapy 2 other people in the world have had, I maybe the first colorectal.

my health, my attitude and I have to say my god is looking after me.

this professor borodie is also friendly with professor morris australia top hipec slicer and dicer. who is also a top researcher, he was recommending cimetidine 10 years ago and did the studies.

so I have no idea if I am coming or going, but I am content to have a few good therapies in the pipeline. I need a bigger pipeline. surely one of these will get me to persistent ned status.

now prof borodie recommended 3 psk breaky and dinner, he has for years to all his cancer patients. see tans how clever we are to use these supplements. the doctors cannot recommend, well I guess most dont. this one did and he is a flammin colorectal guru. there is even I letter from john kennedy, asking his opinion re colorectal drugs in 1991.

so I have to let this doctor into the team, its getting big now. alas all these doctors don't communicate, that to difficult for them.

its as if I have 7 girlfriends in the same town, they are all beautiful, different, wonderful and jealous. they don't get on. instead of the same town, its the same planet.

effectively its going to be my real birthday soon, its a special birthday so I will have a big party, I will invite all these girlsfriends and the wife. somehow I will have to find a way to live through the night and really enjoy my birthday party.

the analogy is , well I may have surgery coming up if these novel and untested therapies need some help, I need these doctors to co-operate, but effectively its day by day.

at present when I am getting specific treatment from doctor N, well he is the boss. tomorrow I will be following doctor kopics infusiuon treatment plan, I have to find a way into my viens, its time to start digging, yesy its come to that. no aussie doctors or nurses will help me find a vien. I might go employ a heroin addictic, they know how to find viens. of course I will use my needles and disinfectant. but as the medical focus changes, different doctors become dominant.

the opportunitistic strategy here, is he offered me the trial next week for free, it accepted before he finished his next breathe. This doctor borodie was keen that I have already used p2x7 as a priming agent for my dendtritic cells vaccines. the high tech testing and blood analysis I desire will be available, now the german visa problem seems less critical.

again I am testing an exciting drug with minimal disease and maximum health. why we have to be almost dead for these stage 1 and 2 clinical trials is criminal. i know all the reasons, but I see the faces here. we should not sit and wait and useup chemo, while other possibly beneficial therapies are ignored.

its simple late stage 4 is too late, early stage 3, or 2 is when we need all these therapies. the go home after surgery, and wait and see what grows, well we all sadly know how that story ends. better therapies are available, better medicine, we have to insist. change doctors, change countires, do whatever is possible, if it feels right for you.

jumping into the scientific space, the conferences, has meant I can discuss my fate with knowledge beyond any other patient, I offer to the doctors a unique willing healthy guianea pig, who cannot spell. I met these lovelly nano particle researchers and developers at the conference, I will ask them about the science.

google p2x7 its an exciting area for drug developement. 

to me its incredible the co-incidence, I was booked for another doctor originally, now I swapped and look at what fun I am about to have. will this new drug kill, probably not, will it save me definitely yes.

when I walked into the doctors door, it was a win win situation from the first word. the fact I gave my dendritic cell vaccination schedule with p2x7 highlighted. he typed in removab into his computer, he read it and looked at me and smiled. these doctors spend their lifes work to make a difference, they need patients like us to help them.

if you get a little pushy, a little arrogant in a nice way, well maybe it might help find a way through the colorectal cancer maze. it starts with my life, then my friends and then the world.

maybe recurrence 2  needs another miracle, maybe prof borodie and nano particle chemo delivery using p2x7 is just what I need to knockout the last few cells. I was crying on bed waiting for yet another colonoscopy. they were tears of joy and disbelief, how can I be so lucky! anyway the results are all clear, which is what I love to hear. I still cannot beleive how blessed I am. My wife was so helpful today, the idea I can stay in sydney a little longer

I still need detailed answers regarding what happened 7 weeks ago, but my gut feel, its was the port infection that trigger the recurrence. a boost in inflamatory cytokines, a distraction for my immune system. Ren if you are reading this now you know why I said get it out yesterday, in fact I would cut it out for free if you would have let me.

the 2 days of fasting for the coloniscopy has pushed me back into ketosis. staying on the ketogenic diet. if anyones keen, pm me and I will send you some good information.

hugs,

Pete

ps next week I will be the first person in austrlai to get cooked to 39.9 degress in hobart of all, places , taking the kids down for the long weekend.

pps also doing the latest in 3 rd ultrasound, where they can measure the exact tumour volume. Only one place in australia has the machine, prof says he will beg to get me in, they want to see how their drug works, I will pretend they really care about me more. you see thats the difference between trials and personalised medicine, its the priority and focus of your doctor. when you are fighting for your life, can you afford to hacve a doctor who is not making your survival 100% the most important thing in his mind, at least when he is looking at you. not the money, the fame, and prestege that comes with breakthrough medicine. what counts is fostering their desire to save "pete", i will bring the kids and the dogs to the next consult, just so prof borodie gets the full picture. we got to use all the tricks up our sleaves, I have not apologised so far for this ruthless relentless approach to survival, I dount I ever will. But I know my way is for me alone, that said anyone wanting to join the guinnea pig club is more than welcome, plenty of room at the moment and membership is open but alas not free.

 

lilacbrroller's picture
lilacbrroller
Posts: 306
Joined: Jun 2012

Congrats on three years. I'm actually at #1 this weekend.   I'm very grateful to you for posting all this information. Good luck on your journey. I'm sure you'll be the world's first recipient of an artificial colon grown from your own stem cells that were cultivated in some lab in Antartica and flown to Oz in some experimental plane....  Ha.  

enjoy!  Cool

 

- Karin

thxmiker's picture
thxmiker
Posts: 1236
Joined: Oct 2010

Congratulations on three years!   Woo hooo, we will woop it up here for ya!

 

Keep up the good fight.

Best Always,  mike

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

the war aint even started, screew this illness to hell and back.

I saw prof morris, I can just walk in a chat with one of the best colorectal HIPEC surgeons and researchers in australia.

a nice warm handshake and a smile, I told him about my joining the p2x7 nano particle trial, he smiled. 

he said they talked about me today, he showed me the rfa tool and explained the technique. i wanted to say "just do it. is now any good ?, i can bend over." but i stayed silent, i dont want to appear to eager. so this is not a big knife, but a very cool looking probe like a big pointy pencil, that has coils coming out. prof morris makes and desings them himself, they can take out tumours up to 7 centimeters. i have to research rfa in a little more detail.

he said wait till after the radiological review meeting monday AM. 

but my mind is working overtime on strategies and synergies to intgrate these therapies. I am prefering to hit all hitable tummours, i have have the lung spot, thats almost gone zapped. in the translated pet, I just saw mention of one lymph node thats suspect.

the principal is to take out and debulk, and then use the targetted nano particle chemo. while all this is happening the disease is being controlled, my immune system is rebuilding ready for the next round of immunotherapies, that are all booked in germany. the timing is tricky. but the general order is clear to me.

i have to investigate tace vs rfa complications, advantages etc etc

of course its fun to b the first patient here trying albendazole, ask your onc's about it, for a stir. do some googling, I trust prof morris, he is a brilliant colorectal researcher and surgoen, the perfect doctor for me.

so I am likely to be staying in sydney for another month for treatment.

I also pulled off what i think will be an enormous achievement, I have a letter for a sydney doctor, enabling me to have all the hallwang infusions in a provate hospital. I bought home 4 weeks worth for $3000 aud. I can have them admistered for free as an outpatient. so I have the best alt german therapies being given to me in a sydney hospital close to the kids school. changing the medical system patient by patient is the only way to go. they cannot argue with my health and the results, they also cannot argue with me as I am to difficult and wont given in. I will always find away around any obstactle. in the way of such determination and a smile and a few bucks, well you can get what you want eventually. I tried this capper with the hospitals in january, the longer I live the easier it is to get my way.

now the sydney researcher with the p2x7 nanoparticle chemo, prof borodie said all the german stuff is bunk. well I did not argue, I just smiled and said I feel pretty good, I will let the results of the infusions speak for them selves. its not a fight I need to have with him at present. but the irony to me is clear, here I am healthy, the perfect subject for his testing. i completely owe my health to german medicine and hallwang, vogel and nesslehut.

the idea of boosting one health, by infusions anbd supplements and getting ready for highly aggressive surgeries and therapies, well i can see the advantage as a patient, after all its my body.

hugs,

Pete

 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

YAY!!!! Such good news! =)

Nana b's picture
Nana b
Posts: 2980
Joined: May 2009

Great to hear from you Pete!   I'm still CEA climing but no tumours.  Strange!  Added Avastin to my Xeloda, not working either.  Going on vacation for 3 weeks to Spain/Italy/Greece, then I will decide next steps!  

 

 

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

rgcc is in greece, pop in and give them a blood sample, say pete sent you, I will get a box of chocolates. alas I cannot have the chocolates.

this slow ever increasing cea is a worthy of a strategy I think. maybe hallwang, when was the last pet ? don't leave it to long in between!

the chemo sensitivity testing might give you some clues.

hugs,

Pete

Nana b's picture
Nana b
Posts: 2980
Joined: May 2009

My pet was in Dec 2012.   NED  

CT in a couple weeks. 

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