Untitled-13In recent years we have been able to gain valuable information from the data produced by tissue donations to the GIST Collaborative Tissue Bank. Much of this data has been the basis for many of the statistics we have been able to share with our members.

This data is proving to not only have the ability to drive research, but also (for instance) to provide a guideline to use when patients are facing medication changes or dose escalation.  Knowing the mutation can be an important part of choosing how to move forward.

In the future, as Tissue Bank participation increases, this information will become an even more valuable tool in the search for the cure. World renowned laboratories and researchers need to have access to many different types of GIST tissue in order to advance their goals.

However, the overall majority of what is available is from pre-imatinib (Gleevec) tumors. This donated tissue is from a tumor sample taken prior to the patient having ever having taken Imatinib.  These too are very valuable; however, less than 1% of what we have received originated from resistant tissue. Just 44 samples of this type have been made available.

“We have a reasonable idea of what resistance mutations accumulate after imatinib and sunitinib treatment. Of particular interest right now are specimens obtained after a patient has failed multiple kinase inhibitors, including regorafenib or sorafenib. Such specimens are rare, but are important for ongoing GIST research. We need to better define the mechanisms of resistance to multiple kinase inhibitors in order to advance new therapies.” said Chris Corless – MD Ph.D of Oregon Health and Science University

Knowing this, we are asking that anyone who has had, or, is planning on having surgery for a resistant mass, contact us to see how you can help. Tissue from these tumors can be sent in by the lab that received it after surgery. A Tissue Bank information packet will be sent upon request with only your signature required to release tissue for this research. While not every surgery will result in enough tissue being harvested, and not all labs will release it, please do allow us to request it on your behalf.Untitled-14