day one science program cimt

thanksphil and everyone for reading.

so my head hurts, a very intense and confronting day.

I asked if I could record the conference on my video , they said ok, then they came back an hour later and said no, it stiffles scientific sharing. I actually agree and understand why this level of scientific exchange should be allowed to flow around the scientific community but not the patient community. so I stopped recording, promised to delete the first hours lecture, by a top drug company immunotherapy unpublished trials. not directly colorectal. I have started describing myself as a scientist rather than a doctor rather than a patient. I could imagine trying to do a phd with any of these top class researchers. they do an hour presentation and end up thanking a team of 40 assistants, and they some breakthrough in understanding that may lead to this and may lead to that.

so I learned about the scientific research process, its impressive. all these passionate men and woman, about 50 /50 and they are so young.say 50% under 30. that surprised me. I realise how little I know now. How little we know mankind about our biology as well. the last speaker said as many pathways for tumours to develop as stars in the sky, actually more he said. thatsalot. his name was doctor wak from canada. they had a top msk guy, another top pen state guy.

the focus seems to be on using onogenes as targets using many different parts of the immune system from antibodies, to vaccines.

one poster desribed using the ratio of til/treg as the best prognosis indicator, better than tnm.

I could not explain all that i learned, I am burnt out from the day and have 2 days left.

The top speaker today does not believe in the ketogenic diet, but said his research partner did. so they have different opinions just like doctors, just like patients.

I am feeling less confident and more humble and still grateful. I also got my second nagalase score today 2.9 which is high, not a good indicator to my understanding and I am still well. So I will just follow the course. each of these researchers makes a poster, they then explain the poster to whoever walks past. must be a few 100 posters on all different cancers, technologies. I am the only patient here, so i am a novelty and they are interested in my story. they always say goodluck and I say keep up the good work.

I feel I am putting a human face, to the people they are trying to help. I have asked my question why me ? a few times. they have no idea, one old professor smiled and stay determined. that was nice.

A few of the big presentations today mentioned longterm survivors, thats about as much hope as I can share. but the miracle cure, seems to be a while off and my miracle seems more special. none of these scientists or doctors has heard of hallwang and even doctor nesslehut, or vogel. it does not surprise me, my medical team is personalised, offering breakthrough medicine. at the conference its traditional trials based immunotherapy, using late stage 4 for testing. which everyone agreed precludes an impressive immune response. so early stage 4 minimal disease miss out, when this is the window when some cures can be reasonably attempted. my opinion, not any scientists.

the take home message I got from today is how big and vast the immunotherapy industry is, how much growth I expect it to make, they expect themselves. the revolution is happening. 

I asked about all my lifestyle stuff, none of the researchers had an opinion, just that if it makes me happy do it. they said they dont think they could ever prove it, if it helped me or if it would help anyone else.

I am having a good sleep tonight, as tomorrow will be another long demanding day. getting a challenging immunotherapy result myself, and having noone at the conference to ask. I am out on my own branch, i just hope it does not snap.

I grabbed 4 copies of the 400 page program booklet with abstracts for my doctors, the online version is worth skimming, its vast. the complexity of our biology, our uniqueness and the clinical challenges ahead of us is daunting for me and exciting. but I always see the glass as half full. I am feeling particularly mortal and on my own. I do miss my family, but I want to stay close to the action. when my cea/ca199 tumour markers come in I will know if i get to go home soon.

how patient and kind all the presenters were, the effort they put inot explain their material to me, well I was truly grateful. the conference organisers made me feel welcome, I regret causing them frustration when I did my video recording, alas its not the first time my enthusiam got me into trouble, I hope its not my last.

I still would like to really to these scientists how so many are fighting for there lives, how grateful we are for all their hard work. mainly to say thanks. i might have chatted to 50 researchers so far, so I am passing on my message of thanks, and in my way helping them to be more aware of the patient, the driving reason for the research. I don't think I will be asked to speak before the large conference 600, I am kind of relieved. I am the only patient, and as I said they everyone has been kind and welcoming.

hugs,

Pete