GIST Support WikiPALANTINE:
Donna (and all),
You may pass on our contact info (below) to all who would be interested in coming as appropriate. The meeting and our contact info are also listed in the LRG calendar: http://liferaftgroup.org/news_calendar.html
Regarding the Chicago GIST group:
All Chicago area GIST patients are welcome to come.
Our founder and local Chairperson is Dick Kinzig. He is listed in the LRG newsletter.
Our group has been meeting 3-4 times a year since September 2002. There are over 100 members (patients and support) in the four state area around Chicago. Our daughter, Nancy, was one of six patients at the first meeting in Sept. 2002. She attended regularly until her death in 2005. (Nancy's web page is here: http://home.comcast.net/~tjhughes43/ )
Initially most patients were members of the Life Raft Group. (I am a director of the LRG). Over time we now have members who belong to both LRG and GSI. Some have joined us after learning of us from their Oncologists and they do not belong to either group.
Our primary function is to meet face-to-face and to share experiences with others who face this same burden. We each talk about our own personal experience and share tips about hospitals and doctors and insurance and managing side effects. We try to have a speaker for each meeting to learn about GIST and about local hospitals, clinical trials, doctors, etc.
We have been fortunate to have a regular meeting place...the Wellness Place in Palatine, IL. It is centrally located in the West suburbs a short distance from I90 (the Northwest Tollway) which run E-W from Chicago. Wellness Place is a major cancer support facility with ongoing programs that some in our group have found helpful.
Our meeting schedule is generally January, May, and September.
We are all volunteers. We share food. There are no expenses.
Dick Kinzig rjkinz@aol.com 847-359-3626 Home
I'd be happy to be the contact person for Illinois for GSI. I don't know how the groups interact or overlap but the meeting is being organized by LifeRaft Group. They "formally" have a "Chicagoland Chapter". I know some people, like myself, are looking through both lists.
Anyway, go ahead and feel free to list my name and email for the WIKI and I'll keep you up to date on meeting etc. in the Illinois area.
Sherri Janousky - clinopt@sbcglobal.net
These group meetings have been organized for years by Dick Krinzig, a
Life Raft member, and he says there are usually 10 to 18 people at each
meeting. Participants arrive around noon with an appetizer, snack or
beverage to share. The meetings consist of brief introductions
including your GIST story, a presentation, and a time for subject
discussion.
The Wellness Place is located in the Williamsburg Village at the corner of Roselle Rd. and Euclid Avenue, Palatine, IL. The address is 1619 W. Colonial Parkway, Palatine, IL, 60067, (847-221-2400)
www.wellnessplace.org
SCHEDULED GET TOGETHER:
Our next meeting is scheduled for Sunday May 4th at the Wellness Center in Palatine at 12:30 pm at the Wellness Place:
Please let us know if you are coming by replying to this email. We are also asking attendees to bring a snack, hors d'oeuvre or dessert so that all may share. We also need beverages.
Our speaker for this meeting will be Pamela Kaiser, MD from Oncology Specialists in Park Ridge, IL. You can see Dr. Kaiser's bio here:
http://www.oncmed.net/html/our_doctors.html#pamela-kaiser
Dr. Kaiser has been an investigator in two current clinical trials admitting GIST:
1. A Phase 2 Study of XL820 in Adults With Advanced GIST Resistant to Imatinib and/or Sunitinib. Details here: http://clinicaltrials.gov/ct2/show/NCT00570635
XL820 is a new oral c-KIT inhibitor. In a 2007 poster the manufacturer Exelixis reported....."...imatinib, and sunitinib were tested in cellular assays measuring their ability to inhibit autophosphorylation of a broad panel of clinically relevant mutant KIT proteins....Results: XL820 inhibits 26 of 27 mutated forms of KIT...." Read the whole poster here: http://exelixis.com/eortc/posters/AACR_NCI_EORTC2007_XL820_resist.pdf
2. Ph II Study of Perifosine Plus Gleevec for Patients With GIST. Details here: http://clinicaltrials.gov/ct2/show/NCT00455559 Perifosine is an oral drug and one of the first to target the PI3K/Akt/mTOR pathway...which has recently identified as active in GIST.
Dr. Kaiser will be talking about these trials, the trial process and Oncology Specialists.
Other discussion items...ASCO in June...LRG LifeFest in September...
We look forward to meeting new members, seeing you all again and also to sharing updates.
Hopefully you are feeling well...and your grass can wait.....
The Best,
Jim (and Dick and Margi) 847-866-8360 - Jim & Margi home 847-359-3626 - Dick home
If you need help or last minute directions the day of the meeting my cell phone is 847-302-5133.