Topic: This time is different??

I have been reading a lot of the new developments, and some of them sound very exciting.  However, it seems like the clinical trial process is very slow and it could be a while before some of the treatments clear all the hurdles.

This got me thinking, does it always feel like a break through is "just around the corner," or is this time different, and a break through is fairly close?

So here is a question for everyone, but especially those who have followed this disease for years:

-Thinking about a major break through in the next 3 years.  Are you a lot more hopeful now than you have ever been?  Or perhaps you are hopeful, but not really more or less hopeful than you have been over the past say 5 years?

Somewhat related question:

-Suppose you are choosing between a lower risk strategy that gave a good chance at 2-3 year survival, or a strategy that was much higher risk, but, if successful, gave a good shot at 5+ years of survival.  What would you think about in making that decision?

I think the questions relate because if you thought there was a good shot at a near-term break through, you wouldn't take the treatment risk.  However, if you weren't too confident of progress, you might lean towards the higher risk treatment.

Disclaimer:  I understand every situation is unique, and I will not consider any comments on this question as a basis for making a treatment decision.

Having said that, I would very much like to hear what people close to the research are thinking in their gut.

Thanks!

Jason

Re: This time is different??

Jason...you are correct in your assessment - we don't see much progress in re: to research.  We do however; witness aggressive physician treatments and a general interest in accellerating research for this disease.
Having said that, it is my believe, that collaborate trials are mandatory and according the my last meeting with NCI representatives, the sequester has influenced further, collaborative conduction of clinical trials outside the US.
Historically, rare diseases have received little financial support from the government hence, we witness the development of disease specific foundations.  In fact, it is for this reason that the Cholangiocarcinoma Foundation has evolved. 
Pharma Industry conducts more clinical trials than anyone else followed, in this country, by the NCI.  NCI is a division of the NIH and that is government.
It is for this reason that disease specific advocacy organizations prefer to work with the Pharma Industry, as this appears the best way to accellerate clinical research studies. 
For now, I believe to work with the most sophisticated and experienced physicians, educate yourself, and realize that this is a personal disease, as responses vary from person to person.
I am sure that others have plenty else to share with you. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

3 (edited by PCL1029 Wed, 12 Jun 2013 19:28:33)

Re: This time is different??

Hi, everyone,
My answer to Jason will be sensitive, so avoid to read my assessment  may not be a bad idea . thanks





























Hi, Jason,

I personally do not think there will be a time line for 3-5 years with regard to your question. 7-10 years will be a more optimistic expectation.
The key lies in the 50-75% recurrence after successful resections; Not to mention if the patients are unresectable or at the late stage of the game.

With regard to the new  tyrosine kinase inhibitors (TKA) that are in the pipeline , the resistance will be developed relatively fast( 3-8 months approx.);And the  chemotherapy agents as well if you account for the toxicity ,both acute and accumulative .
2011or 2012@ ASCO , the hot topic they were talking about were mRNA  and using genomics as the basis for cancer research for the next 10 years.
This year at ASCO, they used the term panomics by adding patients characteristic to the equation of using genomics and genetic information.
What it means to me is that since there are a lot of mutations in even one gene expression, for example, EGFR, there are subset of mutations inside just that one receptor gene and therefore EGFR inhibitors like Tacevar  may work for some but not the others for a few months then you have to find other TKA to keep one step ahead of the game to treat the CCA. You multiply that subset gene mutations for  all the gene expressions like p13,VGFR1,VGFR2,HGF/SF;c-Met ,akt and mTOR pathway and hundreds of other gene expressions have already been found but not yet identified their usefulness. The answer for a magic bullet in the next 5 year seems impossible to me. The only bright spot is by adding or using  the immunotherapy(anti-PDL-1) or antibodies agents  in the future (like the antibody-drug conjugates,monovalent antibodies,dual-action antibodies and glycoengineered antibodies which all are under pre-clinical studies or in vitro studies at this point in Genentech Inc.and other big pharmas) to the equation then we may have a shot for either a prolong result of the treatment or maybe,just may be , like a beta blocker for the chronic disease of hypertension,take it daily and the CCA will not recur again.Yes, it looks hopeless, but it does not means it cannot be done. for example, for the immunotherapy agent called Anti-PDL-1 ;I think it will pretty closed to be approval  by FDA for other solid tumors the end of this year or next year.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.