Immunotherapy conference - any questions for these experts ?

pete43lost_at_sea said:

day 2 cimt 2013, its raining in Mainz, not rain but tears

its 7pm, i am sitting in the lounge before the social dinner crying pulling myself together. 

I am watching 500 scientists and doctors relaxing and drinking. the band is getting ready. the only person here with cancer. 

I just got my latest cea is 23 up from 6 and  ca199 92 up from 50, i am back in the game, lets call it recurrence 2

i never said survival would be easy, but dam this is hard work, how can i save the world if i cannot even keep my own **** out of the fire.

dont worry i have organised another vaccine shot for friday day after this conference and chemo embolisation tace next week.

we all new how tentative non surgical remissions are, I knew in my heart i had more bravardo than substance, I hoped my remission would last. heck i have said enough prayers.

i am so sad, not for my own challenge, but for what i have heard today. 4 colorectal lectures specifically, amazing science, amazing clinical studies and techniques.

20% long term stage 4 survivors who are inoperable using vaccines. I met an oncologist who is also expert on all the therapies i have had and more.

this onc who did a 40 person colorectal vaccine trial said yes to all my life style stuff, especially the weight training and muslce for the immune system, its called being immunocompetant. now we need antigens to stimulate this. 

my criticism of the standard of care has been supported by everything I have learnt here, and I no it means no options but the standard of care, that fact we have to be late stage 4 for clinical trials is criminal for immunotherapy. we need these therapies at our earliest stage of recurrence, and even post surgery, but noone is doing this type of clinical study. and we just keep on dieing. the only way we will fix this problem is patient action, but we have our cancer. 

this situation is tragic, I have not met one immunotherapist who disagrees with me here. 

there will be an immunotherapy revolution, but does it have to be this bloody ? the answer is YES. we should not be forced into trials with placebos, stage1 stuff, we need the absolute best personalised medicine available. its tragic only those with money, willing to fly to germany can access it. its the same old story i have been going on with.

what i have done it the future, our salvation, i am certain of nothing more. these scientists and doctors will save many of us. Our challenge is to live long enough for there therapies to reach us.

I have to focus on my recovery and more intensive therapies. How freaky to this news at this conference. maybe god works in mysterious ways. 

tonight I will network my **** off with every immunotherapist in the room, failure is not an option, I may die from this curse, but it will not be for want of trying. but does it have to this dam hard.

How do I tell my wife and kids ? we had such a great month here exploring Germany.

hugs,

pete

if your interested in day 2 , just read the abstracts

http://cimt.eu/

ps I wrote a speech last night before the news, I wont be asked to deliver it to the conference, but at least i got my feelings down on paper.

http://petertrayhurn.blogspot.de/2013/05/i-dream-of-delivering-this-speech-of.html

The numbers are not an absolute garuntee you are having a reccurrence. Pick yourself up an fight like never before. My second recurrence just about did me in emotionally. I was in the hospital telling my wife and father that i might give. Then once i realised i was feeling sorry for myself i started to fight likenever before and still am. This disease is absolutely BRUTAL. But there are some of us that refuse to give in and "Never say die." I am one of them and I know you are too.

Most of what you write is way beyond my comprehension but just read a small part that your numbers have climbed.  I'm so sorry to hear that as you have been so diligent about trying anything but mainstream and are still continuing to carry on.  My hats off to you, that is for sure.  I'm still praying that you will find the answer.  Please tell your daughter congratulations on her confirmation.  That is a big day for sure.  Wishing you the best for upcoming treatments if any.  Might just be a miss in numbers too or due to something else.

Kim

pete43lost_at_sea said:

day 2 the party and aftermarth

thanks for the kind words and support, craig, cynthia, jeff, semira.

I am flying home in a week for 2 weeks for my daughters confirmation. the family loved germany, they will come back this time for recurrence 2.

craig, I am just being obsessive me, but we no crc, where there's smoke, theres fire. I smell smoke alas.

you comment about hard therapies was right, but no heavy therapies for 6 weeks, and 6 weeks ago cea was 2.8, then 6, then 23 or something. its the trend.

I spent a few hours at the dance chatting with some top colorectal research scientists.

I am the luckiest colorectal patient on the planet, I have a strategy, here goes.

doing another vaccine, another tace to lung, liver , peritoneam with irenotecan, mitomycin, avastin, all localised.

the real question is why the tumour grew ?

a few possibilities either immune disfunction, or tumour mutates so that class mh2c is no longer present on my cells surface, this renders t cell therapies ineffective ie the adaptive immune system. what I am left with is innat immune system and nk cell therapy.

of course I have all the existing therapies, their is the possibility of insulin potentiated low dose chemo over 4 weeks to just hit the mets that are not visible to the immune system. I actually favour this approach, but need the onc input.

plenty of therapies to try still, so glad I made to this conference. the researcher is a colorectal genetic expert, we all have such different responses because of the genetic variablity of our tumours, colorectal more so than any other cancer. 

i am over the shock, thanks for always being their and not holding any grudges. I wish I was more diplomatic, the potential to improve all our outcomes is so vast from what I understand it drives my crazy. so yes in a way I am mad. the 8 years delay

coleys toxins works well on colorectal mice, you just need the LIVE virus, not the crap sold on the internet. I got this from a researcher first. the mice died, but due to tumour lysis syndrome. the tumours disappeared in 24 hours. anyone wanting to dicuss coleys should do it on colonchat which is unregulated as opposed to the terms and conditions here.

who would give up when you have friends on, despite my sheep comments, who has time to hold any hard feelings when we got crc in common. I got my fighting spirit from many of our friends here. as patients we have to demand the best therapies, not our current standard of care,  the problem is no one listens to us, thats life.

what a life, what a night, as always thanks for listening. I half understand the basics of these immunotherapies, some major announcements coming in 2 weeks asco, but not for crc. as always if you have access to a clinical trial with immunotherapies for really early stage 4 do, they got 20% long term complete reponses.

I hope we all find a way to get into the long term response club, given our different tumours, our different therapies might be an advantage. all we can do is keep trying.

thats the key part of the plan, and to enjoy my sleep and tomorrow, the last day of the conference.

hugs,

pete

ps google john bell cancer virus vaccine specialist from canada, newcastle virus disease is old hat. he did the most impressive presentation this morning.

Re Coleys, just to clear up few things. its a a mixture of two bacteria not a virus. Dr. Coley did start treatment with live bacteria, but he found that he killed more people than he cured. He later used heat killed bacteria. I am game for almost anything, though not sure that I would go for a live streptococcus injection.