Karina's Cancer Blog - Page 2
Molecular Profiling for Cancer - Clearity Foundation
If you or your loved one is dealing with stage IV or a metastatic rare cancer like sarcoma, one of the rudest shocks is discovering that your doctor may have no specific recommendations for systemic / chemotherapy. The reason for this is several-fold, among them - the rareness of the cancer (large scale studies may be impossible), the heterogeneity or molecular variability among different patients and even among different tumors within a single patient. As a result - cancer patients must face the possibility that they could take a toxic medication that not only could not have any benefit, but that even could make the cancer worse.
Not surprisingly, with all the recent advances in molecular biology, some researchers and clinicians want this to change. The result are options such as molecular profiling - recently proven to show some benefit on the outcomes of refractory metastatic cancer patients (Molecular Profiling Improves Cancer Treatment. The science is very cutting-edge though, and while many oncologists may feel the technology is not well-studied enough to be used in the clinic on a regular basis, if patient has a rare cancer that has metastasized, profiling may be a powerful weapon in the arsenal to fight the cancer.
In our daughter's case, we found that molecular profiling helped us select "more helpful" and "less helpful" options for investigational agents (there were no known curative agents available), information about how long to stay on an agent, and information about whether the current regimen was beneficial.
There are many different laboratories now offering molecular profiling of cancer tissues, but we can only share our experience. We had the benefit of a charitable organization helping pay for costs that were not covered by insurance. Currently I have heard that one of the labs we used (Clarient) has been covered under traditional health insurance plans. We requested most of the tests on the Immunohistochemistry form off this page). Because of the rareness of our daughter's cancer, we asked all of her doctors (in 3 states) for their opinions, as well as a friend active in biotechnology - and
Because of what was known about the particular sarcoma we were dealing with, we also sent for some outside tests through Targeted Molecular Diagnostics. Our tests from Clarient included: TS, Ki67, Cox 2, PTEN, VEGF, Tau, ERCC1, PDGF alpha and beta, GSTpi, myc, topo II-alpha. From TMD, we were able to check for K-ras, c-met, and IGFR. In addition, we looked at some phosphorylated receptors because we knew we wanted to test the tissue before going to surgery and we were able to have tissue fixed in TMD's Phosphoguard. This may not be necessary, but if results are conflicting, having the phospho-receptor data can be helpful.
If you or your loved one has ovarian cancer, an incredible resource is Dr Laura Shawver's Clearity Foundation. We credit Laura and the Clearity Foundation with giving Karina some of the best years of her life. If you have a rare cancer that is not known to be sensitive to any known chemotherapeutic agent, cancer therapy becomes like the spin of a roulette wheel or worse - like Russian roulette. It's a game of high stakes where no thinking informs a choice - which makes no sense. A drug that doesn't work doesn't just not work - it can greatly worsen your situation, make it likely other drugs won't work, or increase a child or adult's suffering.
Thankfully from Karina's first surgery, we were able to molecularly profile. It helped with our choices, but also helped us appeal when we found doors closed to us. In a few weeks, we're looking forward to traveling to California where the Foundation will be honoring Karina and our family for our contribution to the understanding of molecular profiling and cancer. We are happy to do anything that would honor Karina - but of course we would like to honor Laura and Clearity too. : ) - Fernette & Brock