Topic: Hang in there people........

My Aunt sent me this link.

http://www.cbsnews.com/stories/2008/04/ … age4.shtml


Tom

Re: Hang in there people........

Hi Tom, Really interesting link. Makes you wonder if the cure is not out there already.  I believe the protocal of managing this disease is just around the corner.  It just needs to come to the fore front and the government needs to fast track approval on some of the trials for those patients willing to take the risk.  In my opinion it is not anymore risky than deciding to go to war. I better stop before I get in to politics.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Hang in there people........

The truth is a cure has probably already discovered but has been silenced from the pharm industry. I am not usually a conspiracy theorist, but I do believe cancer treatment is being held back by people who benefit from the status quo. I had dinner with a professor who told me his collegue had developed a treatment for a specific type of breast cancer that really worked (not for all breast cancer, just one type). She sold it to a drug company and years later nothing has been done with it. When she asked why it was apparently not profitable as it helped only one type so she tried to buy the rights back but was denied. I wonder how many other treatments are just lingering around, hiding. It makes me sad.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hang in there people........

Kris.......I agree with you 100%.  Just look at the billions the tobacco company is now paying in fines, but did they or did the government stop the sale or ensure the safety.  The answer is no of coarse.  It wouldn't be economically good would it?  Oh!, I truley deep down inside know the cures for a lot of diseases exsist and the Government I feel has a hand in it as well. Like you said, it makes me sad.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Hang in there people........

I hate the whole "industry" of illness. I wish nonprofits would focus their grants for a bit on non-patentable treatments and research-for example natural treatments and immunology stuff like is happening in Germany. I always hear about how much is spent on drug development, then I think about that governments, universities, and nonprofits from around the world invest in medical research-but only industry gets the profits. I wonder when a company says it costs X to develop a new drug, how much of that does the drug company pay for as a cost (not including what they donate through tax incentive programs)?

But wouldnt it be wonderful if we had genuine scientific studies on vitamin c, co-Q10, and others? Plus more an Avemar. Wouldnt it be wonderful if there was enough real scientific, published information, that we could then fight to get these things covered by insurance. Or at least, we would know for sure that what we are doing is really helping.

Sorry for the somewhat political rant. I just get frustrated that we are all left in limbo and these types of studies would be so much cheaper to finance, yet (except for Avemar) there have been few good published and researched documentation. I understand that the Pharm industry would not finance such studies, but why not nonprofits?

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hang in there people........

I have always felt that the cost of medicinal drugs, especially the life-saving or life-extending drugs, is obscene.  In my view it is impossible to make a case to justify costs of several thousand pounds (or dollars) per treatment particularly when looking at production costs.  In my own working life I have audited the accounts of suppliers and manufacturers within the pharmaceuticals industry and what always struck me was how little regard the major drug companies have to the costs being charged to them by contractors.  The reason for this is that, as a percentage of the final sales values, these production costs are negligible.  I accept that R & D costs can be very high and that only a small number of the products that the companies start to develop are ever brought to the market.  It is therefore necessary for the R & D costs to be recovered through sales.    But what is the point in charging ridiculously high amounts for the drugs so that very few can take advantage of them?  Would it not be better to substantially reduce the selling price which would result in far greater quantities being sold?

My little rant!

Ron

Re: Hang in there people........

Alright Ron!  My sediments exactly.  You know, it's all about money, money, and more money! You know ,I don't have a pot too pee in ,well I do but you know what I mean.  I have seen the inside of the wholesale to retail arena and you just would not believe the cost mark -up to us consumers.  It don't matter what it is, the bigger the demand the higer the mark up.  Then when it don't sell...1st it's sale time, then it's clearance sale time, then it's final blowout sale and the company still makes profit Ha!  Well it's to far gone now.  It'll never change.  If we could only afford to hold out for the final blowout sale we could make a big dent in this fraudy supply and demand. Well, let's not lose sleep over it.  I'm focusing on CC right now.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Hang in there people........

There is also a article in Popular Science, June issue.

Tom

Re: Hang in there people........

I had posted this some time ago.  Thought it might fit into the present conversation.
There is very little research in re: to CC and I believe, these are some of the reasons:

The problem with cancer is the way it is researched. 
In the past it was common for a clinician to come up with a hypothesis in re: to treatment and test it out in the lab. Not anymore. It requires large amounts of capital, which is almost impossible to come by and virtually nonexistent for anyone who has not spent his or her career in laboratory. (Researcher)

I believe that most research is done by the drug companies thus leaving out the researcher or clinician with a great idea but who has now way of funding further investigations.  (This includes large medical institutions)

It takes about $1 billion dollars to bring a new drug to the market.  The cost is staggering. So you can bet that there is not one pharmaceutical company willing to make this kind of investment without realizing a healthy return.  They will try to bring a new drug on the market and have it patented in order to recoup their investment. 

There may very well be products out there already in use, not protected by a patent, which could be highly effective to the patient, and for minimal cost, but they have not been tested further since the money for clinical trials and other evolving costs will not justify the return on anyone

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

Re: Hang in there people........

I very much agree with Marion. We live in a society that wants to earn more money every year, make higher profits every year, buy more expensive things all the time. All is about money, not about humanity. Research? O.k., but the outcome must be profitable.
In our case, the bile duct cancer is only a low percentage of all cancers (7%). To spend a lot of money in research is not going to put researchers and money-providers high on the list of lifesavers or moneymakers.
I dived into the life of Dr. Coley of the Sloan Kettering Institute in N.Y. At the end of the 1800's he accidentally discovered how well hyperthermy worked for brain tumors. Doctors from all over the world came to him to learn more. Death rate in his hospital on brain tumors went down. Then radiology and chemotherapy were discovered. That was the chance for hospitals to get some shiny, beautiful new devices and show off the newest technologies. Death rate went up again, but nobody seemed to notice. Dr. Coley died and now, in 2008, even Sloan Kettering doesnot even know anything about hyperthermy any more. After having written to them asking a number of questions  I think they don't even remember his name.
For all of us, patients and caregivers, this is tough to chew on.
Therefore, fully live and enjoy every good day.
Iris.