Feb 25, 2013 - 9:33 pm
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.
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.