2027 Saturday Meeting Schedule

Our schedule for 2026 will be for hybrid in-person plus Zoom meetings . Our in-person meeting will be at The Wellness House in Hinsdale (address below).  Saturday meeting dates for 2026 are:

• February 6, 2027
• May 8, 2027
• September 11, 2027

Meetings are generally informal.  The typical agenda includes patient GIST journey updates and may also include outside subject matter experts as well as informal updates on GIST management and recent GIST publications or meeting presentations.  There is no charge for the meeting.

 

Zoom, invitations will be sent during the week of the meeting and again on the Friday before to all those on the Chicago Area GIST Group mailing list. If you would like to be added to the list ... text me at 847-302-5133 or email me at tjhughes43 at comcast.net.  Our Google Group mailbox is gistchicago@googlegroups.com.

All Chicago area GIST patients and caregivers are welcome to attend our meetings. Meetings are from 1:00 p.m.to 3:00 p.m.. Doors open at 12:30 p.m. and close at 3:00 p.m.. Wellness house is located at 131 N County Line Rd., one block east of Hinsdale Hospital. Parking is free.   

Attendees are asked to bring a snack or beverage to share before the meeting. If you are planning to attend, please text 847-302-5133 to let us know so we can plan for food and room setup.

Wellness House
131 North County Line Road
Hinsdale, Illinois 60521
Phone 630.323.5150
www.wellnesshouse.org 

Webcast Thur. Jan. 28, 2016: Living with Gastrointestinal Stromal Tumors (GIST)

CancerCare is offering a workshop via either an on-line webcast or as a listen-in phone call with Doctors George Demetri and Mike Heinrich titled " Living with Gastrointestinal Stromal Tumors (GIST)" on Thursday, January 28, 2016, 1:30 – 2:30 pm, Eastern Time. 

Both Drs. Demetri and Heinrich are renowned GIST researchers as well as oncologists who treat a wide range of GIST patients.  This should be a very informative session for those living with GIST and for those seeking options in their treatment plans.

This activity is supported by a grant from Genentech and Pfizer and is being produced in collaboration over two dozen organizations including:

• GIST Cancer Research Fund
• GIST Support International
• Life Raft Group

You can register for the workshop by clicking the link below:
Living with Gastrointestinal Stromal Tumors (GIST)

The next meeting of Chicago Area GIST Patients is scheduled for the following Sunday, January 31, 2016 at 12:30 - 3:30 pm at Wellness House in Hinsdale, IL.  All Chicago area GIST patients and caregivers are welcome to attend. 

Jim Hughes

Chicago Area GIST Patients 2016 Meeting Schedule

Our Chicago Area GIST Patients regular meeting schedule pattern has been to meet on Pro Bowl Sunday in January, and the first Sundays in May and September.  

The planned schedule for 2016 is:

• Sunday, January 31, 2016 (Pro Bowl Sunday)
• Sunday, April 24, 2016
• Sunday, September 11, 2016

Meetings are held at Wellness House 131 N. County Line Road Hinsdale, IL 60521. They generally run from 12:30 pm to 3:30 pm. Attendees are asked to bring a snack or beverage that can be shared.

Contact for the meetings is: Jim Hughes 847*302*5133

GIST Day Of Learning (GDOL) Chicago Returns Tuesday, April 14, 2015 to Northwestern University Medical Research Building

GDOL Chicago will be held this year in the Baldwin Auditorium of the Robert H. Lurie Medical Research Building at 303 E. Superior St. in the Northwestern University medical campus area on the evening of Tuesday, April 14 from 5:00 pm to 8:30 pm. Casual dinner and refreshments will be provided. Discounted parking ($6 coupon) will be available. The program includes Lurie Cancer Center MDs speaking on GIST surgery, management and research.

Register soon ...it's free.

Meeting details, program and registration are here on the LRG website:

Robert H. Lurie Medical Research Building 303 E. Superior at N. Fairbanks Ct.

Lobby and dining area

Baldwin Auditorium

Meeting Sunday, January 25 at Wellness House in Hinsdale

The next meeting of the GISTChicago Chapter of the Life Raft Group will be Sunday, January 25, 2015 at 12:30 pm at Wellness House in Hinsdale.  Wellness House is located at 131 N. County Line Road Hinsdale, IL 60521. The phone there is: (630) 323-5150.  Click here for directions.

All Chicago Area GIST patients are invited to attend. Please RSVP to tjhughes43(at)comcast(dot)net.

The agenda will include a social period, GIST story updates and a brief discussion of recent GIST research. The meeting usually lasts til 3:30 p.

Please bring a snack or refreshment to share.

Wellness House is next door to Hinsdale Hospital and the Highlands Metra Station on the BNSF.

Our meeting room has a kitchen at one end.

Jim Hughes
847~302~5133

Sunday, July 13th, 2014

You're Invited

1st Annual GIST Awareness Day

LOCATION

Peggy Notebaert Nature Museum, 2430 N Cannon Dr., Chicago, IL 60614

ACTIVITIES

• Morning - Informational session for patients and caregivers*: 9 AM-1 PM

*Breakfast and lunch will be provided

• Afternoon - GIST Awareness Day Festival: 1 PM - 4 PM

HELP US MAKE AND DISPLAY 20,000 ORIGAMI BOATS

AND RAISE $200,000 FOR GIST RESEARCH

GIST Awareness Day was created by the Life Raft Group to help address the lack of education and recognition surrounding GIST (GastroIntestinal Stromal Tumors)- a rare cancer of the GI tract- and help break down the barriers to funding, research, treatment and diagnosis that this causes. To raise awareness among the general public about GIST we are attempting to break the Guinness World Record for largest display of origami boats among other activities at this fun family festival.

REGISTER

Both morning and afternoon are free.

Call 847-302-5133 (Jim Hughes)

-OR-

Self register at: www.gistawarenessday.org

MORNING

8:00 AM - 9:00 AM Registration/Breakfast/Mingling
9:00 AM - 9:10 AM Welcome, Mildred Menos, LRG Asst. Director of Programs
9:10 AM - 9:45 AM The Surgeon's Role in Co-management of Patients with GIST, Dr. Karl Bilimoria, Surgical Oncologist, Robert H. Lurie Comprehensive Cancer Center, Northwestern Memorial Hospital
9:45 AM - 10:30 AM GIST Treatment Advancements, Dr. Bruce Brockstein, Medical Oncologist, Director of the Kellogg Cancer Center, at NorthShore University HealthSystem
10:30 AM -10:45 AM Coffee Break
10:45 AM -11:30 AM Managing Emotional and Relationship Changes after a GIST Diagnosis, Dr. Erin Braule, Post-Doctoral Fellow in Psycho-Oncology, Cancer Wellness Center
11:30 AM - 12:30 AM Lunch, Round Table Discussion with Panel of Experts

AFTERNOON

Tasting tables from Chicago’s top bakeries and restaurants, arts and crafts, giveaways, live band and plenty of entertainment for the kids will make this a wonderful day for the whole family.  Featured in the afternoon will be the chance for you to contribute to our Guinness World Record attempt for the largest display of origami boats.

Meeting Sunday, May 4 in Palatine

The next scheduled meeting of the Chicago Area Chapter of the Life Raft Group (LRG) is Sunday, May 4 at 12:30 PM at Wellness Place 1619 West Colonial Parkway Palatine. 

All Chicago area GIST patients and caregivers are invited to attend…especially those new to GIST.

The agenda includes:

• A time to update our personal GIST stories
• LRG Calendar events
• Plans for the next meeting 

Our custom is to share a potluck of appetizers and refreshments at the start of the meeting. 

If you plan to join us please RSVP to  tjhughes43@comcast.net.  

Chicago Area Chapter of LRG Meeting - Sunday, January 26, 2014

To heck with the Polar Vortex … the Alberta Clipper … and the Pineapple Express.  It’s time for a meeting!

The next scheduled meeting of the Chicago Area Chapter of the Life Raft Group is Sunday, January 26 at 12:30 PM at Wellness Place 1619 West Colonial Parkway Palatine. 

All Chicago area GIST patients and caregivers are invited to attend…especially those new to GIST.

If you plan to attend please RSVP to my personal email:  tjhughes43 at comcast.net

Also, our custom is to share a potluck of appetizers and refreshments at the start of the meeting. So let us know if you plan to bring something.

The agenda includes:

• ·         A time to update our personal GIST stories
• ·         LRG Research update
• ·         Plans for the next meeting

Meeting at Cook County Hospital, Saturday, November 9

The next meeting of the Bill Buchanan Chapter at Cook County will be Saturday, November 9, 2013.  

All GIST patients, family and support are invited.  The meeting begins at 12:30 pm.  Food and refreshments will be available as well as free parking in the visitor lot on Polk Street.

The meetings are held in dining room 2A in the cafeteria. Use the Main Hospial Elevator to the basement and follow the signs.

 Meeting contacts are Barbara Cleveland, RN 312-864-7256 or Bill Addis, Patient Advisor 202-276-0289.  Please call Barbara or Bill if you plan to attend. Check this post later for agenda items and any updates.

GIST Day of Learning Chicago 2013

Cost:

• GDOL is Free.
• Breakfast and Lunch are provided.
• Reduced cost parking is available. 

When:

• Sunday, May 5, 2013 from 8:00 AM to 5:00 PM

Where:

• The Baldwin Auditorium - First FloorThe Robert H Lurie Medical Research Center of Northwestern University.
• 303 E. Superior St.
  Chicago, IL  60611

Directions:

• NMH Campus map
• Entrance at 303 E. Superior.  Entrance also at 303 E. Huron
• Discounted parking is available for $7 at the Huron/St. Clair Garage, 222 E. Huron Street.  Discounted parking coupons will be sold during on-site
  registration.

Registration:

• Life Raft Group

Agenda:

• 8:00 AM               Breakfast & Mingling
• 9:00                    Welcome-Janeen Ryan
• 9:15-10:00           Surgical Options-Jeffrey D. Wayne, MD, FACS
• 10:00-10:15          Break
• 10:15-11:00         Clinical Trials Explored and Explained-Jim Hughes
• 11:00-12:00         Question and Answer
• 12:00 PM-1:00      Lunch
• 1:00-1:45             The Role of Oncology For the Treatment of GIST -
                               Al B. Benson III, MD FACP
• 1:45-2:00             Break
• 2:00-2:45             The Pathology of GIST- William Laskin, MD
• 2:45-3:45             Questions and Answers
• 3:45-5:00             Wrap Up-Mingling

Contact:

• Janeen Ryan
• Outreach Coordinator - The Life Raft Group
  mailto:jryan@liferaftgroup.org
  973-837-9092 x 113

UpDates:

• GISTChicago.org

At AACR 2013 ARIAD Reports that Ponatinib Overcomes Resistant KIT Mutations in GIST

The pharmaceutical company, Ariad, issued a press release today (April 9, 2013)  in conjunction with a report delivered at the AACR annual meeting in Washington, DC. Ariad presented pre-clinical data showing that it's drug Iclusig (ponatinib) is active against resistant mutations in GIST.

You can read the full press release here.

Quotes from the press release include:

“These data provide important support for the use of Iclusig in patients with GIST who have become resistant to prior tyrosine kinase inhibitor therapy.”

"ARIAD plans to begin a Phase 2 trial of Iclusig in patients with GIST in the second quarter of 2013."

FDA approves Stivarga (regorafenib) for GIST

The FDA today announced the approval of Stivarga (regorafenib) for GIST. 

“Stivarga is the third drug approved by the FDA to treat gastrointestinal stromal tumors,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “It provides an important new treatment option for patients with GIST in which other approved drugs are no longer effective.”

You can read the fill press release at the link below:

FDA approves Stivarga for advanced gastrointestinal stromal tumors

Cancer Rehab Story on NPR Today

NPR ran a story Monday February 18:  "Cancer Rehab Begins To Bridge A Gap To Reach Patients".  It talks about a Survivor Training And Rehab (STAR) Program for cancer patients.  I thought this might be a good resource for Chicago Area GIST patients.  The STAR web page lists Alexian Brothers Medical Group in Elk Grove as a provider of the program services.  I checked the site and they have a Cancer Rehabilitation page.  Two of the services they list are treatment of fatigue and pain. I do not know if they will take a GIST patient ..but thought someone might want to investigate since these are common treatment side effects and the services may be covered by insurance.  If someone does follow-up...please post a comment here.

Next Meeting Sunday, September 8 in Palatine

The next meeting of the Chicago Area GIST patients at Wellness Place in Palatine is scheduled for Sunday, September 8 at 12:30 pm.

1619 W Colonial Pkwy, Inverness, IL 60067

Or you can write or call me.

Jim Hughes
847-302-5133
tjhughes43@comcast.net

Regorafenib Phase 3 Trial Report Abstract

The abstract of the report on the phase 3 trial of Regorafenib in GIST is now available online at  PubMed.  The original full report was published in the British journal 'Lancet' on January 26, 2013.  You can read the abstract by clicking the link below:

"Efficacy and safety of regorafenib for advanced gastrointestinal stromal tumours after failure of imatinib and sunitinib (GRID): an international, multicentre, randomised, placebo-controlled, phase 3 trial."

News: Antibody hinders resistant GIST in lab

If you check this web page on a regular basis you will see news about GIST in the right-hand menu.  Yesterday there was news about a press release from Stanford University in California.  Life Raft Group Research team members Matt van de Rijn and Jonathan Fletcher have co-authored a paper about a new approach to fighting resistant GIST in the lab.  You can read the press release by clicking the title below:

Antibody hinders growth of Gleevec-resistant gastrointestinal tumors in lab tests, researchers say

You can read the associated news articles by clicking on the titles that include 'antibody' in the "GIST IN GOOGLE NEWS" or by clicking these saved links below:

Science Daily

Medical.net News

Scope blog @ Stanford Univ.

GIST In The Imatinib Era: An LRG Registry Study

Learn about GIST from a Life Raft Group authored paper with data from our patient registry.

Click on the title in the citation below to get the paper:

Call et al.: Survival of gastrointestinal stromal tumor patients in the imatinib era: life raft group observational registry. BMC Cancer 2012 12:90. doi:10.1186/1471-2407-12-90

Some of the data was originally presented in an oral presentation and in a poster at the Connective Tissue Oncology Society (CTOS) meeting November, 2011 in Chicago.

To date over 1,496 GIST patient worldwide have made their mark in the cause of understanding GIST by contributing data to the LRG registry  You can add your own data (or update your record) by emailing:

msarnas@liferaftgroup.org

....or by calling Magda Sarnas at 973-837-9092 ext. 114.

Welcome to the new GIST Chicago Website

'GIST Chicago' is for Chicago Area GIST patients ....Here patients can:

• Get local meeting plans
• Get materials and information discussed at local meetings
• Use comments to volunteer for local events or to ask general questions.

Users can obtain author access by sending an email to GIST Chicago. 

Disclaimer:  Information provided here is not to be considered medical advice and should be reviewed with a medical professional. Patients are encouraged to discuss any information found here with their doctors.  No assurances are provided as to the accuracy of the information found here.