Thinking about you Pete. Hang in there.
( I need to update my passport........I need to drop every F-bomb available on this slimey goop. It takes time and energy to find someone
Who is willing to truly help.)
Be safe.
no,
ascites that is the euro approved use, now trion pharma the devleloper has many similar antibody products coming but , for removab well its off label use has been tired in the aussie guinnea pig here. I am still alive but I tell you it was easier to walk the 100km walk in the relay for life a few months back than recover from removab. just my personal response, we are all unique.
its using my immune system to get results, thats the theory. god i hope this works in practice my dear friend. if you pop over for a visit we cannot even go for a walk, it will just be talk. many more months of interesting therapies ahead. certainly a different path than months of bolus 5fu/avastin or irenotecan.
I have so much support here, half around the world from my family.
so removab aims to train our immune system to eat the ecamp receptor positive tumour cells.
the doctor greg here put my met surgery on hold a week until my liver bounces back, I feel that I am recieving very good care, but time will tell.
they are even making a girdle here to hold my ever growing hernia that noone in sydney wanted to fix. I have always wanted to go to morroco. the real life bucket list.
its a beautiful planet with wonderful people, I am glad I like travelling, morocco sounds better.
doing chemo, radio embilation on monday of most of the mets. will post more when I know more. I goto get over the initial reaction to removab. I am planning to stay here for at least 3 months. looking at buying a car and getting an apartment.
Godbless us all.
hugs,
Pete
PS doc vogel injects avastin staight into the tumour, so I guess you can say I am on chemo as of Monday. I am so tired, off to sleep. All I can manage is a few updates of my removab post.
PPS I gaved in on the ketogenic diet and had sorbet icecream tonight, it was sensational. I will sort out my blood sugars and ketones when my minerals and bloods have stabilised.
PPPS If this woks I will dive past the german little pharma and buy some shares, It will be good for my long term future. now thats positive thinking.
PPPPS I am getting removab IV systemically, I have asked to get it peritoneally as well, time will tell. I signed the paperwok for off label removab use. I am an off label kind of guy.
i am so impressed with onc 6 dr copic, that the idea of going home to get carved and diced with peritonecomy and hipec is prematue until I have exhausted advanced german care options. I have also had some pm's from friends here that have caused me to step carefully re hipec just at this point. so honestly i don't know how long I will stay. I feel i have exhausted most of the best care options conventional and alternative in sydney and germany offers moe potential.
I feel much more optomism here with these therapies, that they are untested and leading edge. its just the type of treatment i want and at least i am not taking undue risk with my own life, now i can pay a professional to take those risks. i have been impressed with the care i have recieved. of course time will tell, how this translates to survival.
my bp is finally back to normal , my bibirubin is settling down, its been up since removab 4 days ago. the acid test is i have energy again. just in time as they considered delaying the chemo emblisiation if i was not up to it.
a few factors have prompted me to consider staying longer, one is germany is the home of low dose hyperthermia. my tumour expresses the heat shock protien and is senstive to avastin. so i like the idea of doing 4 weeks at hallwangen and then 4 weeks at a cheaper specialist oncothermia clinic. then I should have an idea of how effective the regime has been.
hipec will always be their for me, when i get home.
the clinics are a place of healing, they are no place for wife and kids. i am wecked most days. I am giving my wife a break from her role in my care, i am paying for wold class care, and getting it. so she might as well have a well deseved break. she has eally get her hands full with the home and the kids. as you know how stressful the domestic issues are i am in no hury to return to the pressure cooker. I am just watching from afar to see how wife and kids cope. i can send them love and kisses. i think they are better at home and i am bette off here. it takes all my time and effort to keep these doctors on their toes.
I am the first patient here to teach them qigong based coffee enemas to lower bilirubin and get my liver enymes down so i can get tomorrows therapy. I suggested it to the oncologist here, he said ok not a bad idea. you keep the suggestions coming. now my odd ball ways are not for most patients agreed, but i tell you with confidence, i am getting the best value out of everyday in this clinic.
I about 2 months it will be school holidays, maybe then the wife and kids can come over for a 12 month german exchange or a 6 week holiday. I will let where I percieve my best chances for recovery lie.
thanks for asking and caring, things are really pretty fluid, and will be diven by the result of the therapies.
...injects avastin straight into the tumour
What size tumor(s), how deep and what size needle are we talking? With ultrasound for guidance into a blood vessel?
I haven't posted for awhile but I have been following your journey. I was so sorry to see that your cancer spread to the liver and lung. I believe you were originally diagnosed Stage 3 Rectal like me in 2010. Good vibes and blessings to you Pete on this road to a cure! I pray for you everyday on my 3-4 mile walk ~ just wanted to let you know you are in my thoughts.
Give it all you got Pete and stay well, strong and positive like you have been from the beginning of your journey.
i sincerely appreciate and highly value your prayers. I tell you I am giving this my all, as you know. all my spirit and my money. I have stopped my supplements and ketogenic diet for the time being.
I have to really rest and heal, my liver has to bounceback from the removab before surgical treatment of the mets can occur, so here is just to living today really well.
some interesting characters at the clinic, one lovelly man mohamed has invited me visit his house in morocco for a week between treatments. if the doctors said ok, then I would be tempted.
enjoy your walk, Its crazy I am not even allowed to walk for 10 minutes, it really elevates my biblirubin.
but smile a big smile me friend, i am alive, i am getting the treatment i think will give the best prospect of cure. not just another few months, all our journeys are unique, mine is no exception. but my journey is so much more easier with friends and support.
but pray jeff, like i am that this therapy works, that it works for me, if it works for one early stage 4, then dare we dream the dream, maybe just a few others.
i have always had faith and hope. off loading the responsibility to the doctors here and relaxing myself has been such a relief.
all my energy is devouted to rest and healing for the next few months.
if your heart breaks let it be with joy, i am glad to have an really strong reaction, it means i am likely to be a removab responder.
I have been here a week and the tests are coming back. interesting days, they have some bone marrow therapies to get my platlets and white cells up. starting those real soon.
i gave the doctor greg, my supplement list, i will see what he thinks tomorrow.
I have jumped on the scales and I think i have gained a kilogram in a week.
I am rebooked to have the lung and liver met sorted next monday. my liver numbers are all heading in the right direction, at last.
Be happy for me jeff, i really are, these guys are leading edge alternative and conventional. i am optomistic. if it works for one, well, here is hoping!
hugs,
Pete
ps i will likely get an apartment in frankfurt or munich. any of my csn friends pop in the a chat and dinner and some good scnaps.
thats really kind, i do feel inspired in a peaceful way.
you know i find so much inspiration around me, on csn, in hallwang, in the german people.
maybe i have the chance to reflect or share the inspiration i am receiving, if thats the case then so be it.
i am truly grateful for my life, that i am here and that my days are filled with a new found peace. with alot more BEING and alot less DOING.
at hallwang i am letting the doctor earn their fee, i am focusing on doing my part, relax, rest, sleep and heal.
i have been following your posts & you are a very brave guy! i admire you for that. i am so happy that you are pleased with your treatments. you are helping all of us by posting about the medical aspect but especially about how personally you are doing. and it is no surprise that you still have your usual upbeat positive attitude! and after all you have been thru. lots of prayers coming your way!
hugs
judy
i still remember how strange it was to do my first post, today was a good day a hallwang, about 6 hours on the drips. a good consult with doctor schwab and copic re the plan short and medium term. i am getting stems cells to boost my low platlets and white blood cells, i am on so many pills and drips. lots of the good old basics like alpha lipoic, fish oils, minerals, zinc. they are really trying to get the platinum out. they have recommended edta. so that maybe coming , i am also getting photoporessece to boost my blood. so while my liver heals, other important aspects of my biology being addressed. must still be sleeping 14 hours a day.
8 durung the night and 6 during the day.
i did spend some time reading and praying today, not an hour goes past when i don't reflect on the beauty i have around me. the lady in the kitchen, had her 11 year old daughter, helping. my daughter now has a new pen friend, both the girls love horses.
thank you for the prayers judy, I have faith in our God, miracles are possible, and i am asking.
godbless us all.
hugs,
Pete
ps even tonight I had a crosset delivered to help with my hernia. the delivery lady is going to try and find me a place to live thats cheaper than the clinic and i can come here as an out patient.
Thinking about you!!! I hope you are not too lonely. We all feel it. Even with lots of familiar people around, this is a lonely journey, but I feel like we are ALL family. And we just have to continue to support (and LOVE) one another, even when that requires sending the love across oceans and continents.
not too lonely today, to be honest i have my fears and tears, stage 4 well, what a place to be.
but i am smiling, i am confident, there is a way. The LOVE we share is a part of the solution, not the total answer but the most essential. With no love, we have no peace of mind. I have a deep peacefulness and faith my god, in the doctors here.
I know more than the doctors do about some things between you and me, but they are real experts in there treatments and I feel their experience offers me , my best real chance of longterm survival. But i explained the new research about fat stem cells, thanks steve. We are the smartest colorectal cancer patient on the planet collectively. Working together with love, science and determination we will push our care to the limits.
Yes we ALL are family, feeling much better today, i am sure my liver enzymes are better, i am off to yoga/qigong here now , its 7am here and its so dark in germany.
they are measuring my immune system to see if it responds to cimetidine, now thats precise. no more popping pills and supplements without precise guided science.
Lots of love back to you across this beautiful planet, no point keeping love and goodwill in store for a rainy day. anyway today's a rainy day here anyway.
hugs,
Pete
ps behind every hug is love, there always has been , but we don't want to scare the newbies, that are not living in this space next to the edge. everyday is the best last day of my life, no point holding back on anything any more.
its time to live very well this amazing dark day in the black forest, what the stem cells will do this afternoon, well thats interesting, thats exciting. to fix my chemo ravaged immune system, now thats another super cool experiment. Many amazing accomplishments on the way to the summit of my everest.
pps. to wake up today receiving kindness, well no better way to start the day.
a little miracle for me, maybe a miracle for us all, these leading edge therapies in the black forest may offer some hope. thats my prayer also, for us all. with every crazy alternative post, now these therapies a cure that works has always been my intention.
the onc today mentioned my markers are sky high, been very mellow today.
i just got this is the info about the removab and doctor vogel, i put the papers on my google docs today and linked it on my blog. they are pretty good i think.
the prayers are really appreciated! if God's is gracious enough to guide me through the path to cure, i hope my posts may help others.
hugs,
Pete
ps 48 hours to doctor vogel and getting chemo injected into the mets. might as well have some fun on the bleeding edge of science in this beautiful black forest.
I had a great day today, most of the aussies in the clinic went to a french winery and restaurant today, then we had sunset drinks over looking the blackforest.
so I had pork knuckle, red wine, a latta and then a beer towards the end of the day. so the diet is on hold for a day and it was a really good day.
so I went to mass today and prayed, amazing god knows all these languages.
I am off to have doctor vogel treatment tomorrow, I hope this works on my tumours.
Its going to be a real big day, infusions start 5.30am . I will update you guys when I am on the other side. I have my first hyperthermia tuesday as well.
our wonderful god spans the planet and beyond and the universe between our cells.
I prayed heaps during the day, between the mri, the chemo embolisation of my peritoneal mets, of the post op ct with contrast. I got a long way to go, we all do.
but for the record the no chemo hippie is a happy convert. but my chemo is low dose and its been directly injected into each of the peritoneal mets. now thats fancy smancy. something a bit different to keep this board a place of interesting new age therapies.
whats more important the prayerful peaceful mind body meditation or doctor vogel therapies.
my dearest friends, time will tell ? I synergy I think.
ps I had a chocolate biscuit after the procedure and I survived that as well! go figure! of course sugar is bad, but lets no fight that one out.
pps its sad but I was praying on the table, its all done under local, I remember roger, lisa, blake, kerry and all my none csn friends who have passed. My pryers were emotional but positive.
we are a great community, i just wish you all had better spelling and grammar, but life is full of imperfection. My example being proof of that.
Hi Pete,
I hardly post just lurk every once in a while. I am doing the folfiri avastin thing but have also doing some immunology in Japan, I guess we're not that far. I go back to japan after I'm better from my chemotherapy. I just did two and should be back at the end of the month for another. I'd like to keep updated on what you are doing, I'm always looking for options.
Good luck and keep up the great attitude.
Aloha
Donna
Hi Pete,
I hardly post just lurk every once in a while. I am doing the folfiri avastin thing but have also doing some immunology in Japan, I guess we're not that far. I go back to japan after I'm better from my chemotherapy. I just did two and should be back at the end of the month for another. I'd like to keep updated on what you are doing, I'm always looking for options.
Good luck and keep up the great attitude.
Aloha
Donna
Dear Donna,
I am grateful for my attitude, its evolved as I have aged on our wonderful forum, this place where we care and share and aim to live well.
immunotherapy in japan sounds interesting ........... tell me more when you can. I am having stem cells here, photo phoreece how ever they spell it. they take out 300cc blood and pass it under UV light i think. its something they do here, i have to read about it some more.
so now I just had my first hyperthermia fullbody 39.3 for about an hour, I was pretty hot.
it was about 15 hours after the my localised chemo, they want your core body temp raised within 24 hours chemo get the synergy.
feeling really relaxed after hythermeria. I am diong the therapies I have researched and dreamed of. I am optimistic about my care here and my future. I will simply have the best future I have access to and that god is kind enough to deliver. of course I can help a little, but as I play the stage 4 game for real now I have offloaded the heavy duty medical care to my german medical team at the clinic.
my legs and fingers are crossed for you also and for us all. Its a dam hard illness, but it is problem that can be solved, we can find a way to pevail, but god its had work.
Dear Donna,
I am grateful for my attitude, its evolved as I have aged on our wonderful forum, this place where we care and share and aim to live well.
immunotherapy in japan sounds interesting ........... tell me more when you can. I am having stem cells here, photo phoreece how ever they spell it. they take out 300cc blood and pass it under UV light i think. its something they do here, i have to read about it some more.
so now I just had my first hyperthermia fullbody 39.3 for about an hour, I was pretty hot.
it was about 15 hours after the my localised chemo, they want your core body temp raised within 24 hours chemo get the synergy.
feeling really relaxed after hythermeria. I am diong the therapies I have researched and dreamed of. I am optimistic about my care here and my future. I will simply have the best future I have access to and that god is kind enough to deliver. of course I can help a little, but as I play the stage 4 game for real now I have offloaded the heavy duty medical care to my german medical team at the clinic.
my legs and fingers are crossed for you also and for us all. Its a dam hard illness, but it is problem that can be solved, we can find a way to pevail, but god its had work.
I too had to give blood, think only 20cc, they divided into six and separated the white and red cells, then boost the lymphocytes and they put it back after chemotherapy. I always am curious about hyperthermia, I have one of those mats that heat up to 165 degrees, with infrared heat. But I cannot use it in conjunction with my chemo because of dehydration. I have a hard time staying hydrated as it is so I usually wait a couple of days after my chemo to use it, I sleep on it every nite after, I love how you feel on it, nothing like heat to make your body feel better.
Thanks Pete
Donna
I too had to give blood, think only 20cc, they divided into six and separated the white and red cells, then boost the lymphocytes and they put it back after chemotherapy. I always am curious about hyperthermia, I have one of those mats that heat up to 165 degrees, with infrared heat. But I cannot use it in conjunction with my chemo because of dehydration. I have a hard time staying hydrated as it is so I usually wait a couple of days after my chemo to use it, I sleep on it every nite after, I love how you feel on it, nothing like heat to make your body feel better.
Thanks Pete
Donna
Prayers for a successful journey. You have been through so much and have informed many here. Maybe it's your time to write a book :) Just know that you have a lot of people rooting for you. So glad that they are taking such good care of you because you deserve it.
Pete I am praying for you everyday. You are a real inspiration in this crazy battle. I can relate (not right now though) to those awful chemo contipation pains. It's now what we need on top of everything else. Will be thinking about you today. JEff
the black forest is white, the weather is changing, snow is coming, its all fog this morning.
my prayer is for my spirit to stay positive with hope. the cure will take care of itself if I work on my health, my spirit and my attitude. Ok I will give the doctors a few pointers.
cyn, thanks for the hipec stuff, I am getting a second hipec opinion here in 4 weeks after we see how removab, avastin, mitomycin and hyperthermia and chemo embalisation have worked. I would love to avoid the big chop if I can avoid it.
judy the prayers are lovelly, but pray with a smile for us all. I do.
Its possible to turn a challenging prognosis around, and regardless we all have to live well today, its all we have anyway.
how you always stay upbeat! you are going thru some very heavy duty tx but you always are positive. i know there are several of us that draws strength from your posts. thank you. good luck the rest of this week. i pray for you several times a day.with that snow just grab a blanket & snuggle up!!!
hugs
judy
the prayers are helping, maybe the positive attitude I have is a result of the love, care and support I get here and everywhere. Before cancer I never really asked, but now I am open to the kindnesses life puts before me.
Joined: Jan 2010
Dear Pete
Best wishes that all turns out well for you on your journey.
For those newer members, the blog pete referrs to can be found at:
petertrayhurn.blogspot.com
Joined: Nov 2010
dearest Marie, thanks.
My temp peaked 40, been vomit using, shivering, etc.
This is the future of stage 4 treatmentT I think.
I have been run over by a semi trailer, I am exhausted but confident, I have had a strong reaction, my tumours are reining
Time will tell, if this therapy saves my life, is it a magic bullet.
Hugs,
Pete
Ps this maybe the post that saves 1000s of lives, starting with my own.
Joined: Apr 2011
Thinking about you Pete.
Thinking about you Pete. Hang in there.
( I need to update my passport........I need to drop every F-bomb available on this slimey goop. It takes time and energy to find someone
Who is willing to truly help.)
Be safe.
Joined: Feb 2011
Good luck with this Pete,
Good luck with this Pete, hope it works amazing for you!!!
Joined: Aug 2010
Rmovab = catumaxomab I thought it was for cure ascites isn't
Pete? Does it work as chemo as well?
Joined: Nov 2010
thanks my dear pepe
no,
ascites that is the euro approved use, now trion pharma the devleloper has many similar antibody products coming but , for removab well its off label use has been tired in the aussie guinnea pig here. I am still alive but I tell you it was easier to walk the 100km walk in the relay for life a few months back than recover from removab. just my personal response, we are all unique.
its using my immune system to get results, thats the theory. god i hope this works in practice my dear friend. if you pop over for a visit we cannot even go for a walk, it will just be talk. many more months of interesting therapies ahead. certainly a different path than months of bolus 5fu/avastin or irenotecan.
I have so much support here, half around the world from my family.
so removab aims to train our immune system to eat the ecamp receptor positive tumour cells.
the doctor greg here put my met surgery on hold a week until my liver bounces back, I feel that I am recieving very good care, but time will tell.
they are even making a girdle here to hold my ever growing hernia that noone in sydney wanted to fix. I have always wanted to go to morroco. the real life bucket list.
its a beautiful planet with wonderful people, I am glad I like travelling, morocco sounds better.
hugs,
Pete
Joined: Oct 2011
Good luck!
If this turns out to be the cure, I'm flying Down Under and buying you a drink! Ann Alexandria
Joined: Nov 2010
thanks smokey, annalexanria and janie
kind thoughts when you are a world away from family and friends makes me smile.
http://petertrayhurn.blogspot.de/2012/10/removab-at-hallwang_11.html#!/2012/10/removab-at-hallwang_11.html
doing chemo, radio embilation on monday of most of the mets. will post more when I know more. I goto get over the initial reaction to removab. I am planning to stay here for at least 3 months. looking at buying a car and getting an apartment.
Godbless us all.
hugs,
Pete
PS doc vogel injects avastin staight into the tumour, so I guess you can say I am on chemo as of Monday. I am so tired, off to sleep. All I can manage is a few updates of my removab post.
PPS I gaved in on the ketogenic diet and had sorbet icecream tonight, it was sensational. I will sort out my blood sugars and ketones when my minerals and bloods have stabilised.
PPPS If this woks I will dive past the german little pharma and buy some shares, It will be good for my long term future. now thats positive thinking.
PPPPS I am getting removab IV systemically, I have asked to get it peritoneally as well, time will tell. I signed the paperwok for off label removab use. I am an off label kind of guy.
Joined: Jan 2010
Questions
You mention that you are planning to stay for at least 3 months.
Have you given up the idea of having HIPEC?
Will your family be joining you?
What has occurred there that has made you consider changing your original plan of only 1 month?
Just wondering.
Marie who loves kitties
Joined: Nov 2010
great questions marie
i am so impressed with onc 6 dr copic, that the idea of going home to get carved and diced with peritonecomy and hipec is prematue until I have exhausted advanced german care options. I have also had some pm's from friends here that have caused me to step carefully re hipec just at this point. so honestly i don't know how long I will stay. I feel i have exhausted most of the best care options conventional and alternative in sydney and germany offers moe potential.
I feel much more optomism here with these therapies, that they are untested and leading edge. its just the type of treatment i want and at least i am not taking undue risk with my own life, now i can pay a professional to take those risks. i have been impressed with the care i have recieved. of course time will tell, how this translates to survival.
my bp is finally back to normal , my bibirubin is settling down, its been up since removab 4 days ago. the acid test is i have energy again. just in time as they considered delaying the chemo emblisiation if i was not up to it.
a few factors have prompted me to consider staying longer, one is germany is the home of low dose hyperthermia. my tumour expresses the heat shock protien and is senstive to avastin. so i like the idea of doing 4 weeks at hallwangen and then 4 weeks at a cheaper specialist oncothermia clinic. then I should have an idea of how effective the regime has been.
hipec will always be their for me, when i get home.
the clinics are a place of healing, they are no place for wife and kids. i am wecked most days. I am giving my wife a break from her role in my care, i am paying for wold class care, and getting it. so she might as well have a well deseved break. she has eally get her hands full with the home and the kids. as you know how stressful the domestic issues are i am in no hury to return to the pressure cooker. I am just watching from afar to see how wife and kids cope. i can send them love and kisses. i think they are better at home and i am bette off here. it takes all my time and effort to keep these doctors on their toes.
I am the first patient here to teach them qigong based coffee enemas to lower bilirubin and get my liver enymes down so i can get tomorrows therapy. I suggested it to the oncologist here, he said ok not a bad idea. you keep the suggestions coming. now my odd ball ways are not for most patients agreed, but i tell you with confidence, i am getting the best value out of everyday in this clinic.
I about 2 months it will be school holidays, maybe then the wife and kids can come over for a 12 month german exchange or a 6 week holiday. I will let where I percieve my best chances for recovery lie.
thanks for asking and caring, things are really pretty fluid, and will be diven by the result of the therapies.
hugs,
Pete
Joined: Oct 2010
poked
...injects avastin straight into the tumour
What size tumor(s), how deep and what size needle are we talking? With ultrasound for guidance into a blood vessel?
Joined: Nov 2010
thanks tans
i will answer tomorrow, just google doctor vogel, you'll find the papers. my lung met is 9mm, the largest liver is 3x2 and the small is 1x1.
send some good vibes my way for tomorrow, its a big day on the road to cure!
hugs,
Pete
Joined: Sep 2011
Thinking of you Pete
Hi Pete,
I haven't posted for awhile but I have been following your journey. I was so sorry to see that your cancer spread to the liver and lung. I believe you were originally diagnosed Stage 3 Rectal like me in 2010. Good vibes and blessings to you Pete on this road to a cure! I pray for you everyday on my 3-4 mile walk ~ just wanted to let you know you are in my thoughts.
Give it all you got Pete and stay well, strong and positive like you have been from the beginning of your journey.
"Minnesotagirl"
Joined: Nov 2010
thanks minnesotagirl
i sincerely appreciate and highly value your prayers. I tell you I am giving this my all, as you know. all my spirit and my money. I have stopped my supplements and ketogenic diet for the time being.
I have to really rest and heal, my liver has to bounceback from the removab before surgical treatment of the mets can occur, so here is just to living today really well.
some interesting characters at the clinic, one lovelly man mohamed has invited me visit his house in morocco for a week between treatments. if the doctors said ok, then I would be tempted.
enjoy your walk, Its crazy I am not even allowed to walk for 10 minutes, it really elevates my biblirubin.
hugs,
Pete
Joined: Oct 2011
Darn it Pete. It really
Darn it Pete. It really breaks my heart to see you go through this. You are always in my prayers.
Joined: Nov 2010
thanks for caring jeff
but smile a big smile me friend, i am alive, i am getting the treatment i think will give the best prospect of cure. not just another few months, all our journeys are unique, mine is no exception. but my journey is so much more easier with friends and support.
but pray jeff, like i am that this therapy works, that it works for me, if it works for one early stage 4, then dare we dream the dream, maybe just a few others.
i have always had faith and hope. off loading the responsibility to the doctors here and relaxing myself has been such a relief.
all my energy is devouted to rest and healing for the next few months.
if your heart breaks let it be with joy, i am glad to have an really strong reaction, it means i am likely to be a removab responder.
I have been here a week and the tests are coming back. interesting days, they have some bone marrow therapies to get my platlets and white cells up. starting those real soon.
i gave the doctor greg, my supplement list, i will see what he thinks tomorrow.
I have jumped on the scales and I think i have gained a kilogram in a week.
I am rebooked to have the lung and liver met sorted next monday. my liver numbers are all heading in the right direction, at last.
Be happy for me jeff, i really are, these guys are leading edge alternative and conventional. i am optomistic. if it works for one, well, here is hoping!
hugs,
Pete
ps i will likely get an apartment in frankfurt or munich. any of my csn friends pop in the a chat and dinner and some good scnaps.
Joined: Mar 2012
Sending good thoughts your way
Please keep up posted. You are an inspiration!!!
Joined: Nov 2010
thanks marbleotis
thats really kind, i do feel inspired in a peaceful way.
you know i find so much inspiration around me, on csn, in hallwang, in the german people.
maybe i have the chance to reflect or share the inspiration i am receiving, if thats the case then so be it.
i am truly grateful for my life, that i am here and that my days are filled with a new found peace. with alot more BEING and alot less DOING.
at hallwang i am letting the doctor earn their fee, i am focusing on doing my part, relax, rest, sleep and heal.
hugs,
Pete
Joined: Jul 2012
Pete
i have been following your posts & you are a very brave guy! i admire you for that. i am so happy that you are pleased with your treatments. you are helping all of us by posting about the medical aspect but especially about how personally you are doing. and it is no surprise that you still have your usual upbeat positive attitude! and after all you have been thru. lots of prayers coming your way!
hugs
judy
Joined: Nov 2010
thanks judy
i still remember how strange it was to do my first post, today was a good day a hallwang, about 6 hours on the drips. a good consult with doctor schwab and copic re the plan short and medium term. i am getting stems cells to boost my low platlets and white blood cells, i am on so many pills and drips. lots of the good old basics like alpha lipoic, fish oils, minerals, zinc. they are really trying to get the platinum out. they have recommended edta. so that maybe coming , i am also getting photoporessece to boost my blood. so while my liver heals, other important aspects of my biology being addressed. must still be sleeping 14 hours a day.
8 durung the night and 6 during the day.
i did spend some time reading and praying today, not an hour goes past when i don't reflect on the beauty i have around me. the lady in the kitchen, had her 11 year old daughter, helping. my daughter now has a new pen friend, both the girls love horses.
thank you for the prayers judy, I have faith in our God, miracles are possible, and i am asking.
godbless us all.
hugs,
Pete
ps even tonight I had a crosset delivered to help with my hernia. the delivery lady is going to try and find me a place to live thats cheaper than the clinic and i can come here as an out patient.
Joined: May 2011
I am praying for a miracle
I am praying for a miracle for you, too, Pete.
Hugs,
Cathleen Mary
Joined: Apr 2011
Hi Pete
Thinking about you!!! I hope you are not too lonely. We all feel it. Even with lots of familiar people around, this is a lonely journey, but I feel like we are ALL family. And we just have to continue to support (and LOVE) one another, even when that requires sending the love across oceans and continents.
Joined: Nov 2010
thanks janie
dear janie,
not too lonely today, to be honest i have my fears and tears, stage 4 well, what a place to be.
but i am smiling, i am confident, there is a way. The LOVE we share is a part of the solution, not the total answer but the most essential. With no love, we have no peace of mind. I have a deep peacefulness and faith my god, in the doctors here.
I know more than the doctors do about some things between you and me, but they are real experts in there treatments and I feel their experience offers me , my best real chance of longterm survival. But i explained the new research about fat stem cells, thanks steve. We are the smartest colorectal cancer patient on the planet collectively. Working together with love, science and determination we will push our care to the limits.
Yes we ALL are family, feeling much better today, i am sure my liver enzymes are better, i am off to yoga/qigong here now , its 7am here and its so dark in germany.
they are measuring my immune system to see if it responds to cimetidine, now thats precise. no more popping pills and supplements without precise guided science.
Lots of love back to you across this beautiful planet, no point keeping love and goodwill in store for a rainy day. anyway today's a rainy day here anyway.
hugs,
Pete
ps behind every hug is love, there always has been , but we don't want to scare the newbies, that are not living in this space next to the edge. everyday is the best last day of my life, no point holding back on anything any more.
its time to live very well this amazing dark day in the black forest, what the stem cells will do this afternoon, well thats interesting, thats exciting. to fix my chemo ravaged immune system, now thats another super cool experiment. Many amazing accomplishments on the way to the summit of my everest.
pps. to wake up today receiving kindness, well no better way to start the day.
Joined: Nov 2010
thanks cathleen
a little miracle for me, maybe a miracle for us all, these leading edge therapies in the black forest may offer some hope. thats my prayer also, for us all. with every crazy alternative post, now these therapies a cure that works has always been my intention.
it still is.
hugs,
Pete
Joined: May 2011
Thinking of you with Prayers
We are here to support you as you start your next phase in this cancer journey.
Prayers,
NB
Joined: Nov 2010
thanks relax and technical basis of therapies on blog today
the onc today mentioned my markers are sky high, been very mellow today.
i just got this is the info about the removab and doctor vogel, i put the papers on my google docs today and linked it on my blog. they are pretty good i think.
http://petertrayhurn.blogspot.de/2012/10/cancer-markers-high-and-walk-in-black.html
here is hoping........
the prayers are really appreciated! if God's is gracious enough to guide me through the path to cure, i hope my posts may help others.
hugs,
Pete
ps 48 hours to doctor vogel and getting chemo injected into the mets. might as well have some fun on the bleeding edge of science in this beautiful black forest.
Joined: Jul 2012
Pete
hang in there! i am still sending huge prayers your way!
hugs
judy
Joined: Nov 2010
thanks Judy
I had a great day today, most of the aussies in the clinic went to a french winery and restaurant today, then we had sunset drinks over looking the blackforest.
so I had pork knuckle, red wine, a latta and then a beer towards the end of the day. so the diet is on hold for a day and it was a really good day.
treatment starts for real on monday.
hugs,
Pete
Joined: Jul 2012
good luck
on monday. i am glad you had a good time. you needed that!!!
hugs
judy
Joined: Dec 2011
Pete - day you had at the
Pete - day you had at the winery sounds like 'perfection'!!. Positive thoughts always your way.
P
Joined: Feb 2008
Praying for your miracle
Praying for healing for you, my sweet friend.
*hugs*
Gail
Joined: Nov 2010
thanks gail, judy and pmac
so I went to mass today and prayed, amazing god knows all these languages.
I am off to have doctor vogel treatment tomorrow, I hope this works on my tumours.
Its going to be a real big day, infusions start 5.30am . I will update you guys when I am on the other side. I have my first hyperthermia tuesday as well.
hugs,
Pete
Joined: Apr 2011
Good luck, Pete. You and
Good luck, Pete. You and the whole CSN family will be in my prayers tonight. It feels so good to pray.
Joined: Oct 2011
You are in my prayers each
You are in my prayers each and every morning
Joined: Nov 2010
thanks jeff and janie
our wonderful god spans the planet and beyond and the universe between our cells.
I prayed heaps during the day, between the mri, the chemo embolisation of my peritoneal mets, of the post op ct with contrast. I got a long way to go, we all do.
but for the record the no chemo hippie is a happy convert. but my chemo is low dose and its been directly injected into each of the peritoneal mets. now thats fancy smancy. something a bit different to keep this board a place of interesting new age therapies.
whats more important the prayerful peaceful mind body meditation or doctor vogel therapies.
my dearest friends, time will tell ? I synergy I think.
http://petertrayhurn.blogspot.de/2012/10/first-vogel-treatment-at-frankfurt-uni.html
hugs,
Pete
ps I had a chocolate biscuit after the procedure and I survived that as well! go figure! of course sugar is bad, but lets no fight that one out.
pps its sad but I was praying on the table, its all done under local, I remember roger, lisa, blake, kerry and all my none csn friends who have passed. My pryers were emotional but positive.
we are a great community, i just wish you all had better spelling and grammar, but life is full of imperfection. My example being proof of that.
Joined: Jul 2009
Crossing my fingers
Hi Pete,
I hardly post just lurk every once in a while. I am doing the folfiri avastin thing but have also doing some immunology in Japan, I guess we're not that far. I go back to japan after I'm better from my chemotherapy. I just did two and should be back at the end of the month for another. I'd like to keep updated on what you are doing, I'm always looking for options.
Good luck and keep up the great attitude.
Aloha
Donna
Joined: Jul 2009
Crossing my fingers
Hi Pete,
I hardly post just lurk every once in a while. I am doing the folfiri avastin thing but have also doing some immunology in Japan, I guess we're not that far. I go back to japan after I'm better from my chemotherapy. I just did two and should be back at the end of the month for another. I'd like to keep updated on what you are doing, I'm always looking for options.
Good luck and keep up the great attitude.
Aloha
Donna
Joined: Nov 2010
thanks Donna and my first hyperthermia
Dear Donna,
I am grateful for my attitude, its evolved as I have aged on our wonderful forum, this place where we care and share and aim to live well.
immunotherapy in japan sounds interesting ........... tell me more when you can. I am having stem cells here, photo phoreece how ever they spell it. they take out 300cc blood and pass it under UV light i think. its something they do here, i have to read about it some more.
so now I just had my first hyperthermia fullbody 39.3 for about an hour, I was pretty hot.
it was about 15 hours after the my localised chemo, they want your core body temp raised within 24 hours chemo get the synergy.
feeling really relaxed after hythermeria. I am diong the therapies I have researched and dreamed of. I am optimistic about my care here and my future. I will simply have the best future I have access to and that god is kind enough to deliver. of course I can help a little, but as I play the stage 4 game for real now I have offloaded the heavy duty medical care to my german medical team at the clinic.
my legs and fingers are crossed for you also and for us all. Its a dam hard illness, but it is problem that can be solved, we can find a way to pevail, but god its had work.
hugs,
Pete
Joined: Nov 2010
thanks Donna and my first hyperthermia
Dear Donna,
I am grateful for my attitude, its evolved as I have aged on our wonderful forum, this place where we care and share and aim to live well.
immunotherapy in japan sounds interesting ........... tell me more when you can. I am having stem cells here, photo phoreece how ever they spell it. they take out 300cc blood and pass it under UV light i think. its something they do here, i have to read about it some more.
so now I just had my first hyperthermia fullbody 39.3 for about an hour, I was pretty hot.
it was about 15 hours after the my localised chemo, they want your core body temp raised within 24 hours chemo get the synergy.
feeling really relaxed after hythermeria. I am diong the therapies I have researched and dreamed of. I am optimistic about my care here and my future. I will simply have the best future I have access to and that god is kind enough to deliver. of course I can help a little, but as I play the stage 4 game for real now I have offloaded the heavy duty medical care to my german medical team at the clinic.
my legs and fingers are crossed for you also and for us all. Its a dam hard illness, but it is problem that can be solved, we can find a way to pevail, but god its had work.
hugs,
Pete
Joined: Jul 2009
Interesting
I too had to give blood, think only 20cc, they divided into six and separated the white and red cells, then boost the lymphocytes and they put it back after chemotherapy. I always am curious about hyperthermia, I have one of those mats that heat up to 165 degrees, with infrared heat. But I cannot use it in conjunction with my chemo because of dehydration. I have a hard time staying hydrated as it is so I usually wait a couple of days after my chemo to use it, I sleep on it every nite after, I love how you feel on it, nothing like heat to make your body feel better.
Thanks Pete
Donna
Joined: Jul 2009
Interesting
I too had to give blood, think only 20cc, they divided into six and separated the white and red cells, then boost the lymphocytes and they put it back after chemotherapy. I always am curious about hyperthermia, I have one of those mats that heat up to 165 degrees, with infrared heat. But I cannot use it in conjunction with my chemo because of dehydration. I have a hard time staying hydrated as it is so I usually wait a couple of days after my chemo to use it, I sleep on it every nite after, I love how you feel on it, nothing like heat to make your body feel better.
Thanks Pete
Donna
Joined: Feb 2009
Thinking of You
Prayers for a successful journey. You have been through so much and have informed many here. Maybe it's your time to write a book :) Just know that you have a lot of people rooting for you. So glad that they are taking such good care of you because you deserve it.
Hugs! Kim
Joined: Nov 2010
thanks kim
its along way since the old reversal blues, or may i say reversal poos. ha ha!!!!!!!!!!
hugs,
Pete
ps was up all night due to chemo constipation, remember the folfox express
Joined: Sep 2011
Praying for you
Pete I am praying for you everyday. You are a real inspiration in this crazy battle. I can relate (not right now though) to those awful chemo contipation pains. It's now what we need on top of everything else. Will be thinking about you today. JEff
Joined: Nov 2010
thanks jeff
the prayers are appreciated, if gods listening, and I know he is, if he is smiling on me favourably this story will have a happy ending.
this is my prayer, I am really sending out a positive vibe here, a few at the clinic have challenges, regardless we can live very well today.
the constipations solved, nothing a long black coffee cannot fix.
hugs,
Pete
Joined: Apr 2010
Hey Pete, Best of luck with
Hey Pete,
Best of luck with everything, I hope that you find a cure, or at least a way to slow down the beast...
Best wishes, and take care,
Cyn
Joined: Mar 2011
Pete, i am holding you in a
Pete, i am holding you in a healing light and praying as hard as I can.
Hugs,
Judy
Joined: Nov 2010
thanks Judy and Cyn
the black forest is white, the weather is changing, snow is coming, its all fog this morning.
my prayer is for my spirit to stay positive with hope. the cure will take care of itself if I work on my health, my spirit and my attitude. Ok I will give the doctors a few pointers.
cyn, thanks for the hipec stuff, I am getting a second hipec opinion here in 4 weeks after we see how removab, avastin, mitomycin and hyperthermia and chemo embalisation have worked. I would love to avoid the big chop if I can avoid it.
judy the prayers are lovelly, but pray with a smile for us all. I do.
Its possible to turn a challenging prognosis around, and regardless we all have to live well today, its all we have anyway.
hugs,
Pete
Joined: Jul 2012
i can not believe
how you always stay upbeat! you are going thru some very heavy duty tx but you always are positive. i know there are several of us that draws strength from your posts. thank you. good luck the rest of this week. i pray for you several times a day.with that snow just grab a blanket & snuggle up!!!
hugs
judy
Joined: Nov 2010
thanks judy
the prayers are helping, maybe the positive attitude I have is a result of the love, care and support I get here and everywhere. Before cancer I never really asked, but now I am open to the kindnesses life puts before me.
http://petertrayhurn.blogspot.de/2012/10/ursula-jacobs-is-top-oncologist-really.html
the removab treatments here are pretty hard, I have put most the updates in my blog if anyone is contemplating this course of therapy.
I will grab a blanket and snuggle up.
hugs,
Pete
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