Tuesday, May 1, 2012

What can a Patient do?


I think patients can do a lot more than donating money.
1.  We can advocate for ourselves, demand genomic sequencing on our tumor samples (not oncotype DX which gives me 4 pieces of information), but something that will return gigabytes of your tumor DNA sequence so it can be analyzed in future in light of new research
2.  We can donate our patient record and our blood samples and our spare tumor samples to researchers who are interested (and who will share, that's important).   The 10 subcategory of BC was done based 2000 such patients.
3.  We can fund more old clinical trials to be retrospectively analyzed for DNA.   A lot of drugs failed on phase III at 5-20% clinical response.   These drugs may work 100% for some people with specific subtype of breast cancer.
4.  We can join clinical trials whenever we can.     Pediatric cancer made a lot more progress in the last 20 years because all kids with cancer join clinical trials.    Medicine advances fastest through clinical trials.   Just say no to the snake-oil salesman who wants to sell you the secret to survival; if it is a secret, if it's not reproducable, if it's not sharable, then it's likely worthless.
5.  We can fund fundamental biological research, in immunology, in brain, in stem cells.   One day, vaccine and stem cells will revolutionalize treatment of metastatic breast cancer.

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