The LRG - What we do everyday

I’ve been a member of the Life Raft Group (LRG) since before it was the LRG. Not everyone will get the same thing from being a member. The most important thing that I ever got, THAT LIFE-SAVING THING, was critical information at a critical time.

Critical information at a critical time.

June - 2000 - I was a member of the leiomyosarcoma listserv ran by ACOR. The critical information that I needed was posted by Norman Scherzer and Gary Golnick. After belonging to the listserv for months, Norman posted that his wife Anita was having an outstanding response to a new drug in clinical trials. That started a chain of events that led to my wife, Stephanie entering into the first ever clinical trial of Gleevec for GIST. You can read the rest of that story here.

Today, many people get that same type of critical information from a newer version of the listserv called GIST Chat. A place where you can ask question, get answers and exchange information with hundreds of other GIST patients and caregivers going through the same types of things that you are.

The Best Doctors

Sometimes I get asked by someone outside the GIST world about cancer. For example, a newly-diagnosed family member or friend. Since I’m not an expert in their type of cancer, I really only give two pieces of advice. Find the best doctors you can (especially if you are dealing with a rare type of cancer) and, if you are high risk, join an on-line support group for your type of cancer. The second thing (join group) will often lead you to the first thing (best doctors). As a bonus you will find out about the newest treatments as soon as possible, often before your local doctors. Oh, one more thing, if you are a low-risk cancer patient and after surgery, have confidence in that low-risk assesment, go live your life and don’t worry about cancer. I hope to have more to say about that in a future post.

Your local medical team

Finding experts in your type of cancer doesn’t mean you won’t need expert local care. Your local medical team, including oncologists, nurses and other specialists form the backbone of your care. They are the people that you see for all of your regular appointments, scans, etc. In fact, I plan to say more about that in another, yet to be written post. Engaging local doctors and connecting them to GIST referral centers is a key element for finding a cure for GIST.

The latest treatments

Since 2009, the LRG has maintained its own clinical trials database and website. This database, ran by long-time LRG member Jim Hughes, takes the latest information from sources like clinicaltrials.gov and adds to that information. For example, we track not only the trials but trial results, information about each drug, including links to articles about the drugs and trials.

If you need more info, you can ask other LRG members, LRG staff, or ask Jim Hughes. Jim is incredibly knowledgeable about GIST trials. Note that this clinical trials database/website is currently undergoing a major upgrade as the LRG updates it’s GIST registry and integrates those two platforms.

Collaborations

One of the most important functions that the LRG does in regards to improving care for patients is collaborating with others. I’ll just highlight one of those recent collaborations.

Dr. Heikki Joensuu

The LRG GIST registry is the largest GIST registry in the world. It often produces hypotheses that evolve into collaborations. As one example, LRG data showing that mutation type was related to the risk of recurrence was presented at the 2023 Connective Tissue Oncology Society meeting (see presentation). This data helped lead to the largest collaborative project ever undertaken in GIST, with 16 GIST centers and registries around the world contributing to the project. This project will have approximately 6000 GIST cases and will be led by Dr. Heikki Joensuu. Dr. Joensuu treated the very first GIST patient with Gleevec and had been the leader in the GIST world for developing risk criteria and studying adjuvant (preventative) treatment for GIST.

I don’t want to try to re-create the LRG website here, just give readers a flavor of what the LRG does. Here’s a short list of other things we do and a few links to much more comprehensive information on the LRG website.

• Education

  • Newsletters

  • Webinars

  • In-person events, GIST day of Learning, LifeFest

• Research

  • The LRG GIST registry

  • Collaborations

  • Financial support

• Support

  • GIST mentor program

  • GIST chat

  • Mutational testing collaborations

  • GIST specialists list