This idea popped into my head. I think its time, while I am in sydney.
If you see nothing below here, you know the idea failed. I saw one of my doctor on a current affair tonight.
To raise awareness and to say thanks to all my friends, doctors, nurses and supporters. I am on the edge of the precipase climbing down from my everest. I am confident I will make it down alive, but I am not naive enough to be overconfident to think that I could slip down the crevace of colorectal metastatis cancer. Now I have some pretty amazing climbing companions, that I would like to introduce you to, today prof morris who you have read about, early on he played a support role in the big medical team, now he is getting the spotlight, which is really suiting to his stature and nature. us aussies are quiet achievers in many mays, our doctors, scientists and patients and the amazing communities and families behind us all.
Lone Pine Memorial Service 2013 ANZAC Day Gallipoli, Turkey
We are at the 1 hour section, well worth listening to if you are a passionate australian.
http://www.scienceofcrc.org/resources/ from my friend steve on csn, a new website for crc patients. I have been following theire strategies for years, its nice to have another pretty crc website, its cal to action essential. I note it does not have immunotherapies, alas I am sure it will come. I have emailed them. Years ago i started using their navy protocol, which was doxy cylon, herceptin and celebrex. I am going back on this combo. Again this protocol is recommended for dogs, but we have so much in common biologically. And they are are after all mans best friend. At least this man. Did it stop the cea rising no, not it help possibly yes. again cheap and no sides. the celebrex part of the equation is a no brainer. aggressive off label use of meds, well its a motivated patients best hope i think.
the advantage of being active in patient communities is that you share what you know, but also get forced to review where you are at personally, ie I am actively now reconsidering going back on navy protocol, but I will discuss with prof morris next week. how navy works, conflicts, synergieses with albendazole, well I have to investigate, but lots of potential. who wants to die from this curse. I need a fulltime research assistant, then a fulltime write. but i digress.
my blogging is really my way to pay back, all the help i have recieved from the patient communities, if I can help inspire a few, downtrodden, well that will be nice. cancer is like a big boot, crushing a roach, alas our spirit is the roach and cancer the boot. if the roach aint in the way, let it live. ever heard of calma.
a few days ago was critical of conservative survivors crushing new patients desires to work outside the box, I have unoffically picked up my shielf as their defender, at least to the extent that new diagnosised have a right to follow their gut and not be dissauded by the 1 in 100 conventional long term survivor. I say if you want to try, then bloody well try very very hard, and when conservatives put you down tell them very peacefully to get stuffed and mind their own business.
so again, its my body, i decide. noone else, the fact that I don't have the time or the energy to fight all the very nasty conservatives, although well meaning, is what frustrates the crap out of me. I save my energy for my survival. the biggest fight is coming after i save me own life.
I recognise how comlex this issue is in patient communities, these are just my feelings. I know how fragile hope and enthusiam are, we have to support each other, not fight amongst our selves. going back to the big ketogenic fight, well that the perfect example.
I am off to the beach for yoga, exercise and sauna. the kids are asleep and ellie is at the tuckshop for netball. is is an amazing girl. last night
http://csn.cancer.org/node/259619#comment-1375215
New
If you see nothing below here, you know the idea failed. I saw one of my doctor on a current affair tonight.
Checkout PMPPALS if you got cancer.
http://pmppals.org/index.html prof morris put me onto this, another great site with essential survival tips.To raise awareness and to say thanks to all my friends, doctors, nurses and supporters. I am on the edge of the precipase climbing down from my everest. I am confident I will make it down alive, but I am not naive enough to be overconfident to think that I could slip down the crevace of colorectal metastatis cancer. Now I have some pretty amazing climbing companions, that I would like to introduce you to, today prof morris who you have read about, early on he played a support role in the big medical team, now he is getting the spotlight, which is really suiting to his stature and nature. us aussies are quiet achievers in many mays, our doctors, scientists and patients and the amazing communities and families behind us all.
Lone Pine Memorial Service 2013 ANZAC Day Gallipoli, Turkey
We are at the 1 hour section, well worth listening to if you are a passionate australian.
The science of crc, the angiogenic foundation.
A dear friend tony , put me onto this years ago, its a good way to go. I am an example of their ideas. Its certainly worth a shot.
the advantage of being active in patient communities is that you share what you know, but also get forced to review where you are at personally, ie I am actively now reconsidering going back on navy protocol, but I will discuss with prof morris next week. how navy works, conflicts, synergieses with albendazole, well I have to investigate, but lots of potential. who wants to die from this curse. I need a fulltime research assistant, then a fulltime write. but i digress.
my blogging is really my way to pay back, all the help i have recieved from the patient communities, if I can help inspire a few, downtrodden, well that will be nice. cancer is like a big boot, crushing a roach, alas our spirit is the roach and cancer the boot. if the roach aint in the way, let it live. ever heard of calma.
a few days ago was critical of conservative survivors crushing new patients desires to work outside the box, I have unoffically picked up my shielf as their defender, at least to the extent that new diagnosised have a right to follow their gut and not be dissauded by the 1 in 100 conventional long term survivor. I say if you want to try, then bloody well try very very hard, and when conservatives put you down tell them very peacefully to get stuffed and mind their own business.
so again, its my body, i decide. noone else, the fact that I don't have the time or the energy to fight all the very nasty conservatives, although well meaning, is what frustrates the crap out of me. I save my energy for my survival. the biggest fight is coming after i save me own life.
I recognise how comlex this issue is in patient communities, these are just my feelings. I know how fragile hope and enthusiam are, we have to support each other, not fight amongst our selves. going back to the big ketogenic fight, well that the perfect example.
I am off to the beach for yoga, exercise and sauna. the kids are asleep and ellie is at the tuckshop for netball. is is an amazing girl. last night
http://csn.cancer.org/node/259619#comment-1375215
I have been following their protocol for over a year
Newits a nice new pretty website, worth reading if you beleive mans best friend is a dog called navy. tony put me onto this, its not what you know in this game, thats going to save your life, but who. thanks tony. the weakness is they dont advocate immunotherapies, or their mixed involvement, but for the angiogenesis part of the puzzle they make a worthwhile contribution.
they dont discuss avastin pluses and minuses, they dont discuss albendazole which is the lastest offlabel vegf inhibitor. Its reasonable to try their strategies and see if it helps, i did. again you cannot go wrong with celebrex, the science is compelling. of course your onc will smile when he sees you on herceptin which is for breast cancer. well mine did, they did not tell me to stop it, which i found interesting.... and doxy , well thats a drug I have used as I have travelled extensively diving. I have a soft spot for anti malarials and colorectal cancer treatment.
hugs,
Pete
The Science of CRC focuses on increasing global public awareness of colorectal cancer (CRC), the role of angiogenesis (new blood vessel growth) in CRC, and the importance of antiangiogenic treatments for patients with metastatic colorectal cancer (mCRC).
The Angiogenesis Foundation built this resource to provide accurate, easy to understand, and useful information about the evidence supporting antiangiogenic therapy for mCRC. We believe everyone affected by mCRC can be empowered with knowledge of relevant treatments, and the practical steps they can take to fight cancer.
Use this resource to learn:
Use this resource to learn:
- Why early detection of CRC is vital
- CRC’s impact on quality of life
- How CRC develops through angiogenesis
- Impact of antiangiogenic therapy for treating mCRC
- Specific antiangiogenic treatments, their benefits, side effects, and data supporting their use for mCRC
- Summary of major clinical trials for mCRC treatments
- References
- Links to other useful resources on mCRC
Email to the angiogenic foundation re new site, albendazole and immunotherapies.
your new site has been discussed on my blog and around the colorectal community.
do you plan to update it with references to immunotherapies, alas your content while great in terms of innovative angiogenic material appears lacking re immunotherapies.
also I have a specific query re using albendazole another vegf inhibitor. any comments would be welcome.
as one of the more outspeoken and off label colrectal survivors on the planet, I was wondering if you would put a like to other patient blogs like mine and my friend ren who are poineering what I called personalised translational oncology.
keep up the good work!
I have a dog named pete, who is 90kg, what a co-incidence! thanks sincerely, getting colorectals onto celebrex and other off labels generally essential.
Update with meeting with prof morris and another exciting day in sydney.
today I also saw doctor hamerie at double bay, he gace me some vit c , b's and magnesium. mostly importantly he agreed to support the hallwang infusion protocol and wrote a letter so I can get an australian nurse to do the infusions. this maybe possible in a private hospital.
I will take the letter, the hallwang treatment plan, back to prof king and see if hurstville private can help me. this will be an amzing achievement as its the tip in the iceberg in getting these therapies available for other cancer patients.
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