CSN Login
Members Online: 8

Immunotherapy revolution, its really started

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

dear friends,

tony posted this the other day, 

http://csn.cancer.org/node/255089 all about some immunotherapy options available in mexico and a trial in the states. it was just such a relief for me personally because i felt so bad that these therapies were not available or accessible in the states. and that the german offerings i have faith in left an unpleasant feeling for many american friends.

its also time to especially for me to personally and publicly thank tony, he does not have colorectal, his son has a brain tumour. for some reason we are truly blessed to have his support and ideas here. he has had a few unkind comments in the past, but i think the future he will be seen with enormous gratitude here. not many jumped onto his earth shattering post about immunotherapy in the states. it would be a shame if this key part of the immunotherapy revolution was missed. so i draw your attention to it. you may see blog about my enquiries re these trials and treatment offerings. which will be updated when they come in.

now a few here have expressed serious interest in these types of immunotherapies therapies ren, ted, fucc and lisa??? ( a newbie ) and of course me, i am doing these now in germany.

i just wanted to say how cool it is to see change in a positive direction from a few patients that feel this is the way to go. this in. no ways says what others are currently doing is wrong or bad. noone has the right here to criticise a cancer friends personal choices from chemo to extreme alternative to somewhere in the middle.

but i will point out that for a long time here, support was offered to friends here doing conventional therapies, often in quiet a pleasing and unconditional way. I have felt that many trying non conventional therapies have not had the same level of support, in fact a few have been critcised.

I will point out that positive praise is good for us and that criticism is bad for us. now you know i firmly believe maximising the positive support and minimising the negative criticism good for my immune system. so i just want to boost my fellow innovators spirits and say well done and good luck. in the process i seek to boost there immune function with positive support, they should feel pleased that their example may inspire and motivate others. at least for me personally i am very curious to see how these new teatment offerings go.

I specialise is pointing out the obvious in a confusing way, especially given my amazing command of spelling and grammar. so here i go again,

to me it seems the clinical trial thing was always offered as a last ditch survival option after all chemos exhausted. now i have not heard of anyone here being saved by this route, nor any amazing drugs being released for our benefit out of our friends signing up for these trials and effectively offering their bodies as human guinea pigs for potentially our communities benefit. a few names come to mind here over the last few years.

now you also have a clinical trial that if you read the words and eligibility criteria you maybe able to slide into with some twistering and juggling of that facts, my strategy is to seek admission to these style of immunotherapy therapies asap, to minise time you are exposed to systemic chemo, to minimise the chance of developing chemo resistence, to minmise the damage to your immune system. in this context it seems plausible that early stage 4s might be able to do a few hits of systemic chemo, then say opps look at my immune system, my bloods. i want this trial now, to maximise its chance of effectiveness.

a possible outcome of this style of trial is an extended long term chemo free remission, i want use the word cure, whats the point, as to me cure implies restoring to the way we were before, and i don't feel i can ever return to my old existence,but the new healthy existence, well i am quiet attached to it in a detached kind of way. i certainly have a joy of living each day come what may with this illness.

so again i suggest a strategy where we access immunotherapy based therapies before or as earlier as possible into our metastatic journey. my experience and research leads me to the opinion that this offers me the best quality and quantity of life.

so you have a few ideas about how to access these trials, or even the treatments. i am just sharing my hope that these therapies really have merit, basically i have gambled my life on the success of this style of therapies, if you decide to gamble your life you have my heart felt support and that of many others here.

I clearly point out that i don't seek to convince anyone to do these therapies. my only suggestion is that you are legally allowed to choose your medical treatments, and to do your research, to choose not to research and accept your doctors advice. whatever we decide, i hope we do it in a way that gives us peace of mind and a joy of living day by day.

the immunotherapy revolution is happening day by day, its exciting to be apart of it. either watching from the side lines, hoping supporting those actively trying the therapies. we never never know until we try.

hugs,

pete

ps dr chang in new york offers dendritic cell vaccines, it requires a visit to germany and then regular vaccines being delivered to new york as per your treatment plan. i point out for those time poor that its possible to do a series of treatments at hallwang with removab and the commence a vaccination program in a 4-5 week window. i am not recomending these treatments, just saying whats logistically possible. personally i prefer the relaxed extended stay german offering, but for those on time constraints i can see a way of trying some of these keys therapies in a 4-5 week window. feel free to substitute any clinic or doctor that offers this style of therapy near you thats accessible. its just so encouraging that these therapies are more available then i realised, why even in canada they have a massive immunotherapy trial going on, right now. i certainly don't feel so alone now, or foolish for trying these experimental and untested therapies.

 

 

 

 

Fucc
Posts: 92
Joined: Sep 2012

Pete, you mentioned a trial in Canada. Where can I getinformations on that. Thx. 

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

dear fucc, i wish i had it, i am spending 5 hours a day researching, i must be reading 50 to 100 pages or papers a day, way too many pages, i kind of keep track of the important stuff on my blog, thats specifically relevant to me. do some serious digging you find it , its canada wide, i am sure some of our canadian friends, i had a qik look and could not see it. but found other amazing stuff so thanks. if it turns up in my wanderings on the net i will post it here, if you or someone else finfs it, post it so i stop searching.

hugs,

pete

luvinlife2
Posts: 172
Joined: Jul 2012

Here's a couple I found in Canada.  Both are in OntarioSmile

 

http://www.uhnresearch.ca/researchers/profile.php?lookup=4520

 

http://oicr.on.ca//files/public/FactSheetORBIT-Jan4-2013.pdf

 

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

Canada seems to have a legal framework that facilitates these trials, its regretable the usa laws and regulation discourages the practice of these therapies, you just seem to have to go to travel to canada or mexico or you can go a bit further to germany.

Its amazing how much you learn when you try to help others, in the process you teach yourself.

 

First in human phase I/II clinical trial of 

MG1 Maraba virus alone and following 

an adenovirus prime in patients with 

metastatic colorectal cancer and 

metastatic non-small cell lung cancer.

< Manufacturing oncolytic virus and 

adenovirus;

< Assay development;

< Toxicity testing;

< Immune monitoring;

< Collaboration with National Cancer 

Institute of Canada.

hugs,

Pete

janie1
Posts: 753
Joined: Apr 2011

I agree, Pete. Tony continues to be a big help here. It actually gives me hope knowing that there are a lot of dedicated researchers here. I won't name everyone.....you all know.

I think all this info has given me the guts to try a Phase 1 "immunotherapy" trial......well, I still have to go thru the tests, before I can for sure be in it.
It's scary, but I've ALWAYS thought immunotherapy is KEY. Nothing else makes sense.

I just know you've got to try things before it's too late. I know an 81 year old man who is in liver failure, but he still thinks there is something out there.
It's so sad. He's always been pretty healthy, and I wish he could have tried other things before he got too debilitated. Neither of his 2 oncologists helped him, they just kept leading him down the wrong path. They knew where he was headed. I'm not saying that they needed to do every little thing to save him, but they never helped with a clinical trial which I don't think would have been too difficult. But now it's too late.

Thanks everyone.

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

you always had the guts my dear friend.

we all do in our ways.

the losses associated with our illness and the stories we share here tragic and inspiring in there own ways, especially the sad 80 year old.

my humblest suggestion is that those embarking on trials in the immunotherapy world do everything humanly possible to boost there immune systems before commening.

the clinical trials in conventional still have a drug based approach and not holistic focus.

you can do all the healthy holistic immunosupportive therapies and not prejudice the trial results. the beauty of the supplementation/off label therapy supports they also are deemed largely ineffective so hopefully those completing trials could continue effective supplementation, of course with the trial nurses concurrence.

what a patient takes in the privacy of their home is their private business.

the focus of trials should be access to medicine that gives a chance at life as the primary goal, not completing some study for academic purposes.

best of luck with he trial, read about ahcc on my blog if you get a moment,

hugs,

Pete

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network