CSN Login
Members Online: 4

You are here

Immunotherapy conference - any questions for these experts ?

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

I am looking forward to this conference, many of the worlds best immunotherpists and one NED patient that I know of.

Anyone else interested in flying over for the week, its spring and germany is beautiful.

I will report any interesting findings re colorectal cancer.  Remember immunotherapy first, chemo second. And do it as soon as possible.

If you are interested in whats happening around the world, download the CIMT abstract, quiet impressive.

Alas I am not speaking yet at the conference, but you never never know if you don't have a go!

Personally I think these researcher would benefit from seeing a very grateful patient.

I will be asking many many questions relevant to my survival, questions no single doctor I have met can answer.

PM me your questions, so I can raise them to the correct expert. Read over the abstract so you know who best to ask.





Highlights of the 2013 Annual Meeting will be discussions on advanced strategies for targeted immunotherapies. Dedicated sessions on the tumor micro-environment and on combination therapies will talk about disease mechanisms and address the optimization of immunotherapies: 
Who can benefit, when and why?

Exciting recent results on combining immunotherapies with other standard cancer treatments are presented through preclinical and clinical data. Sessions in therapeutic vaccination, cellular therapy and improving immunity will discuss recent advances and future applications. In addition, CIP (CIMT Immunoguding Program) and CIMT-RRG (Regulatory Research Group)will hold sessions and panel discussions focusing on standardized and innovative tools for improving the quality of immunomonitoring and facilitating the translation of scientific knowledge to drug development.

renw's picture
Posts: 282
Joined: Jan 2013

How can you tell whether your body is simply ignoring cancer cells, treating  them as normal vs. an active immune system that is fighting the cancer, just can't keep up with the rate of growth?

Reason I ask, my rggc showed an active and elevated  IL1 and have had fever every evening for past  5 months, with or without chemo.

John23's picture
Posts: 2140
Joined: Jan 2007




“How can you tell whether your body is simply ignoring cancer cells”


When our immune system ignores a dead or severely damaged cell, that cell begins using the fermentation process to remain alive; they call that cell “cancer”.


If we can sensitize the immune system to identify a cancer cell (or any cell that’s so severely damaged that it can not sustain life in it’s normal manner), our immune system will remove those cells. If the immune system is strong enough, it will not have any problem “keeping up”.


When our immune system is fighting any disease, our internal temperature rises, or it should rise. The rise in temperature helps our immune system fight the disease.


Is it an indication that our system is doing what it should be doing? Probably so!


There’s enough written about this, to keep one busy for a long, long time:


Fevers and our health



Best of health,





renw's picture
Posts: 282
Joined: Jan 2013

Its not as simple as that. A fever may also be caused by the rapid division of cancer cells for example so does not always indicate an immune response.

Lovekitties's picture
Posts: 3372
Joined: Jan 2010

Taken from the American Cancer Society website:

What is immunotherapy?

Immunotherapy is also sometimes called biologic therapy or biotherapy. It is treatment that uses certain parts of the immune system to fight diseases such as cancer. This can be done in a couple of ways.

  • Stimulating your own immune system to work harder or smarter to attack cancer cells
  • Giving you immune system components, such as man-made immune system proteins

For a long time doctors suspected that the immune system had an effect on certain cancers. Even before the immune system was well understood, William Coley, MD, a New York surgeon, first noted that getting an infection after surgery seemed to help some cancer patients. In the late 1800s, he began treating cancer patients by infecting them with certain kinds of bacteria, which came to be known as Coley toxins. Although he had some success, his technique was overshadowed when other forms of cancer treatment, such as radiation therapy, came into use.

Since then, doctors have learned a great deal about the immune system. This has led to research into how it can be used to treat cancer, using many different approaches. In the last few decades immunotherapy has become an important part of treating several types of cancer.

Immunotherapy includes a wide variety of treatments that work in different ways. Some seem to work by boosting the body’s immune system in a very general way. Others help train the immune system to attack cancer cells specifically.

Immunotherapy seems to work better for some types of cancer than for others. It is used by itself to treat some cancers, but for many cancers it seems to work best when used along with other types of treatment.

As researchers have learned more about the body’s immune system in recent years, they have begun to figure out how it might be used to treat cancer more effectively. Newer treatments now being tested seem to work better and will have a greater impact on the outlook for people with cancer in the future.

Last Medical Review: 05/09/2012



Hi Pete, I guess I would want to know their opinion as to why immunotherapy shows better results on some cancers than others.  I would also like to know if these folks are concentrating on any particular cancer or if they are each working on their own particular interest.  The biggest question of all is when will they be able to stem the tide of persons getting cancer and for saving those who already have it.

Hope that you learn much at the conference.

Marie who loves kitties

PhillieG's picture
Posts: 4912
Joined: May 2005

It sounds like it will be interesting. I'd be interested to learn about success rates as well as if they feel this IS a one size fits all treatment.

Seems like you're doing well...keep it going.


lilacbrroller's picture
Posts: 412
Joined: Jun 2012

I have a question. If immuno therapy does show significant promise over current treatments, it would be wonderful if world regulatory bodies could collaborate in order to expedite approval. If the EU approves it first, why can't, say, the UK, US, Australia and other countries with strict approval processes just accept the EU's recommendations and permit immediate use in their respective countries? Or maybe with some additional testing, but not ten years of it!!  As middle class Americans, we need the FDA approval stamp so that our insurance companies will reimburse/pay for the therapies.

I made an appointment to see Dr. Chang in NYC at the Meridian clinic later this month about the dendritic vaccine, which I never would have known about if I hadn't read your posts.  If I'm a good candidate, I'll go to Germany I guess.  i applied for a U Pitt clinical trial for a dendritic vaccine but was rejected because i have lung mets.  They were seeking Stage IVs but metastases to only one site, per the test protocol.  My friend has breast cancer and she is looking into this therapy as well. 

cheers and thanks for advocating and sharing



pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

day one endeavor cimt

its 12.44am, I just finished emails for people coming to germany, so here goes todays summary of this amazing conference.

I pushed my way in, gave the I'm cured speech, aint immunotherapy great, and have hooked up with conference organisers.

in principle they want patient groups to provide regulatory pressure interntionally. medical scientific innovstion is held back by red tape and GREED.

my success is still rare in this forum of 600 researchers and scientists . 

I clearly understand the breakthrough dont translate to drugs to help us, its more money than science and medicine is somehow not helping.

The science is compelling, i have so much hope, I could write a book on todays stuff alone. in summary germany and israel ( good for tony ) are the leaders due to government  startup funding initiativs and legal and uni cultures.

just my opinions, talked to researchers on GCMAF, COX2, PEG2, ADENOVIRUS, lipid membranes and simply europe best immunotherapists.

talked to fund managers and venture capitalists about raising funds, to invest in startups. what about stage4 investing in cancer biotech startups. I reckon thats a winner of an idea. if we got the money, well we cannot take it with us, why not invest it companies trying to defeat the illness that took you out. this could work, but its just an idea at this point.

No big studies, no big successes yet, but I just skimmed the 600 abstracts trying to workout what I will attend and focus my learning on.

Mainz is a beautiful city, these guys and girls are passionate about saving us, the conference is so organised.

I asked this amazing startup ceo and chief scientist to a colorectal TCTL antibody, she did not say no.

The big question I am asking is ?

Are all the life style interventions I have been going about really beneficial ? thats tomorrows question.

All the therapies I have used GCMAf, Newcastle virus disease, etc etc are being studies at universities around europe, it gives me faith. Besides my success, the therapies have solid scince behind them, alas no clinical trials. the reason 15 million funding needed for stage 2, they dont have the money and that from patentable technology. something like gcmaf, metformin, ldn, celebrex has none and buckleys of ever being trialed, well the odds are against it. 

Yes I will ask about ketogenic diet as well ?

These researchers are so specialised, they can tell you the shape of a protein, but they would not know tace from hipec. One immunotherapist was integued by my result with removab. she is the second doctor outside hallwang who even knows of it.

so, more tomorrow, its just my opinion, but one speaker said "the cure is 10 years away", so said sorry but I am cured, the cure is in the chair. the focus is generic cures, antibodies that are better than chemo. the focus is not personalised medicine like hallang from what I can gather.

read the abstracts, the program guide, just imagine 600 top researchers and scientists and venture capitalists, not so many doctors. this is cutting edge science.

again another top doctors comment stuck, "immunotherapy does not work with large tumour burdens". hello we already know that, but thats from the top. so if you wont to try immunotherapies, do what i have always said, try immunotherapies first and then if unsuccesful chemo if you have access to it.

I have lost a few colorectal friends here in the last week, sometimes the magic does not happen in the black forest, its just black and sad. 

thanks for the kind comments. I hope this little report brings some hope, thats its main purpose.



ps got a question about the best GBM vaccine therapy to ask tomorrow

pps big warning about blood clot risk for cancer patinents in general and particularly when flying. this risk is increased if your on cox2 inhibitor like celebrex. which some here are on, check the contra indications with your doctor, especially any heart issues. the researcher was adamant about that.

PPPS its ok to shot the messenger, he is tougher than you think, I hope you enjoyed this all over the place summary.

pppps the real reason to have hope!


PhillieG's picture
Posts: 4912
Joined: May 2005

I'm glad you're having a good time there. It's great that they want people to apply pressure to get research moving faster. In addition to Red Tape and Greed is the safety of what they find. Fortunately and unfortunately they do have to test and do trials or else everyone who didn't do well would likely sue them. That's how it goes...

But even your comment "my success is still rare in this forum of 600 researchers and scientists" points to the fact that there's no miracle cure out there and probably won't be for a very long time. Still, I've always held the belief that some people do better than others and someone's got to be in that group that does better. Why not you? Why not me? Why not others?

Have fun!



pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

thanks phil 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. thats alot. 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.



lilacbrroller's picture
Posts: 412
Joined: Jun 2012

good work - thanks as always for posting.  I asked a friend of a friend who is a drug company rep and he had never heard of removab's off label benefits either...

I think the Hallwang crew needs to start attending such conferences, presenting papers and getting their name out. Believe that's how word spreads.


renw's picture
Posts: 282
Joined: Jan 2013

If word spreads too much, one tends to find himself shut down results or no results. Sad but quite common.

lilacbrroller's picture
Posts: 412
Joined: Jun 2012

that's not right. You'd think "a good product sells" .... sigh.

Aicirtap's picture
Posts: 55
Joined: Apr 2013


Im farely new here.. So you probably read from me for the first time.. 

Thank you for all your posts on new treatments and this conference. I admire how actively you are pursuing possibilities with an illness with respect to which science is making big steps in short periods of time. These steps will be bigger the more open minded people are out there, trying, stumbling, going on. This is the spirit that gets things going - not saying that a patient needs to deal with it. But there's great strength to be found in people/patients/doctors and business Angels who are out there trying Stuff that has not been and in parts probably never will ne proven. One jackpot for many failures .. 

Looking forward to reading (much more) - bring a face to the conference and have an inspiring day! 


Posts: 1170
Joined: Sep 2012

Hi Pete,

Thanks so much for taking the time to post all this info and for all you do on behalf of the patient. Steve and I appreciate your efforts.


Semira's picture
Posts: 378
Joined: Mar 2012

for your great posts. So much information and inspiration.

Enjoy the conference and the spring in Germany.

Greetings from Cologne




Posts: 2215
Joined: Oct 2011

Pete thank you for reporting all of this good info to us. I look forward to hearing more from you.

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

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.



if your interested in day 2 , just read the abstracts


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.


Sundanceh's picture
Posts: 4408
Joined: Jun 2009


My last CA19-9 test was 102...that was in March '13.......three months prior it was the lowest ever at 74.

At its highest peak back in 2007, it was in the 600's....

Here's how it has played out over the last year...

Component Standard Range 12/3/2010 1/26/2011 11/30/2011 2/1/2012 4/4/2012 6/6/2012 9/5/2012 12/5/2012 3/6/2013
CA 19-9   103 133 139 160 243 170 136 74 102

I like this marker and still request it....I'm one of the few that do....the marker is also used for pancreatic cancer, which is what they thought I had, only to find out it was only in the liver at that time.  But, still it is a marker and it always makes me feel better to see it trending down.....and concerns me when it trends up.

CEA is still relatively low, though it has trended upwards slightly in 'tenths' increments...but it's not out of the range yet, so I hold pat.

It seems I remember you saying (maybe at the start of this post) that you were 'clear' but trying to keep it away in a remissive state with all of these immunotherapies.

What changed?

Besides the rise in numbers?

Is it possible that your body is just reflecting the pounding that it has been getting from all of the various methods you have employed over the last couple of years?  Your body has not gotten much rest as you've hammered it pretty good.

I'm wondering if this rise in numbers is just temporary and will trend back downwards.

I do agree that placebos in a drug trial is not right and should be criminal...in fact, in the book I wrote, I was a little bit more succint.  And I also agree that early is better than late...the tide does have to be changed early on - catch up when you're behind the 8-ball is very difficult.

I'm one of the ones that you are referring to that does not have ample means to pursue varied courses of treatment....even with insurance, I was buried under an avalanche long ago....since not being in treatment or the O/R, I've tried to make a dent in what I owe, since I'm not incurring too much extra to their bottom lines by only doing 2 scans a year and blood every 3 months. 

So, for me, my strategy has to work....because if it doesn't, well then....

I still currently am on no maintenance plan of any kind......still riding out the longest streak (22 mos) of the entire 9-years I've done this....and still waiting for the inevitable news that I've always felt will find me again......if so, that would make #4.

I just don't know about a great many things with this disease....

As for what to tell your family?  I would tell them the truth the best that you understand things right now - with things being subject to change, of course.

Just keep going....and stay the course....run your race. 

My case baffles me too...I have no answers for either of us.

LivinginNH's picture
Posts: 1458
Joined: Apr 2010


Hey Pete, 

Well, you tried everything and anything possible - at least you tried.....  Sorry that you didn't get better news.  :(Try to take comfort in that you made wonderful memories with your family, but I think it's time to go back home to be with them and make more wonderful memories.

Take care,


Posts: 404
Joined: Jun 2012

Coley's fluid will kick its ***.

After the lipoplatin episode Im reluctant to try but on paper it has merit.

Check out Dr, Marcs result if you haven't already.

Posts: 2215
Joined: Oct 2011

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.

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

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.



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

Posts: 1170
Joined: Sep 2012

Hi Pete. Sorry to hear of this recent set back. There are so many highs and lows with this disease. It's quite a roller coaster. Dr. John Bell is a scientist at The Ottawa Hospital which is where Steve is being treated. We have met him. He's very impressive. Hope you enjoy your time with your family. Congratulations on your daughters confirmation.


renw's picture
Posts: 282
Joined: Jan 2013

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.

Annabelle41415's picture
Posts: 6706
Joined: Feb 2009

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.


Subscribe to Comments for "Immunotherapy conference - any questions for these experts ?"