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Patients Against Lymphoma


About Us > The Cancer Genome Atlas Project 

Last update: 07/06/2011

Our group was honored to take part in announcing the launch of 
The Cancer Genome Atlas (TCGA) project - “a large-scale collaborative effort 
by the NCI and the National Human Genome Research Institute 
to systematically characterize the genetic changes that occur in cancer
Here we provide links to additional information and a copy of remarks 
we made on behalf of patients at the National Press Conference on Dec 13, 2005. 

We are happy to receive comments and suggestions by email
from patients and caregivers regarding this project. 



Speakers (left to right):  
Andrew C. von Eschenbach, M.D.
, Director, National Cancer Institute
Karl Schwartz, President and Founder, Patients Against Lymphoma
Francis S. Collins, M.D., Ph.D.
, Director, National Human Genome Research Institute
Elias A. Zerhouni, M.D.
, Director, National Institutes of Health
Anna D. Barker, Ph.D.
, Deputy Director, National Cancer Institute
Ronald A. DePinho, M.D., Harvard Medical School,Center for Applied Cancer Science, The Dana Farber Cancer Institute
Bruce E. Johnson, M.D.
, The Dana Farber Cancer Institute, Brigham and Women’s Hospital


About The Cancer Genome Atlas (TCGA):

Message from the Institute Directors 

"Cancer is now understood to include more than 200 different diseases. In all forms of cancer, genomic changes — often specific to a particular type or stage of cancer — cause disruptions within cellular pathways that result in 
uncontrolled cell growth." 

News Conference Webcast, Speakers 

The Cancer Genome Atlas Pilot Project
December 13, 2005

National Press Club
Washington, D.C.

TGCA: How it will work 

"Eligible cancer patients will be asked to donate a small portion of tumor tissue that has been removed as part of their cancer treatment. The tissue will be collected for a research study and will not affect the patient’s medical" ...

Q&A on the TGCA project

=Good morning.

I'm here to tell you why I believe this project
is so important to patients . that is to say, to us all.

As difficult as it may be to realize, or want to:
A serious cancer will affect virtually every family in this audience.
As Dr. Collins has noted: It will strike 1 in 2 men; and one in 3 women in the United States.

My spouse was diagnosed with lymphoma in 1996.
And since then and through our group's support work,
I've met many hundreds of patients who suffer the disease
and from treatment toxicities.

I can tell you that there's a trial-and-error aspect to care and research.

Obviously, treatment toxicity is not desirable, or wanted,
but what can be worse than unproductive toxicity -
getting only the side effects for no benefit,
and often, significant harm?

Unfortunately, for some cancers this risk is very high,
and considered better than having no chance at all.

The toxicity of treatment can also narrow the range
of remaining treatment choices.
Patients and clinicians call this "burning bridges."

In fact, for lymphomas, it seems we don't run out of options
so much as the ability to tolerate them.

We cannot yet account for important differences in patients and
in the biology of the tumor - even tumors with the same name are different.

And this deficiency in information can be tragic:

* In trials or in clinical practice, the majority of patients can suffer
toxicity for no benefit;

* expensive research efforts often fail, giving pause for drug sponsors to 
try again;

* potentially useful drugs (for some patients) are not approved because
we can't identify who they are for;

* The wariness of patients to participate in trial-and-error
research adds costs and increases delays.

In the Critical Path report, the FDA has told us that
that there is actually a decline in new cancer drug applications,
that the costs of testing new drugs for cancers are rising;
and that the rising costs may not be sustainable.

The agency has noted an urgent need for new tools to identify
markers that predict toxicity and benefit EARLY in the
development phase of cancer drugs before they are given to patients.

It's clear that to achieve the goal of relieving pain, suffering and death 
from cancers requires a more comprehensive and systematic approach -
one that is patient-centered; and targeted.

Importantly, cancer survivors and community physicians
cannot be bystanders in this effort.

The revolution in cancer research, described by Dr. Von Eschenbach,
REQUIRES our participation in order to be fully realized.

In conclusion:
For too long the success or failure of a therapy has been
"a page torn out," 1 which does not inform the science - the book we use
to guide how to treat others, including us.

Regarding human tissue, when it is not properly stored
and fully described in the conduct of a study
we are wasting precious information that encodes
the pathways of the disease, which provides the context
and explanation of the outcome.

In an ideal world, every test,
treatment, and result would inform the science
while attempting to fully meet the clinical needs of the patient.

Today we are taking a giant step towards realizing this ideal.

We owe a debt to the skills and hard work of scientists;
and the patients who have made heroic sacrifices.

They have all made this historic moment possible.

Thanks for listening.

~ Karl Schwartz

From the Q&A session: Regarding costs of the project, it must be seen in the context of the gain, and that 
the gains will be significant, because providing open access to 
comprehensive information about cancer cells will allow commercial entities 
to develop targeted drugs with greater efficiency ...

1 Adapted from Meditation XVII by John Donne.


Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
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