Tip Center

Number of side effects reported

20

Number of diseases reported

50

Latest News

Dr. Nikhil Guhagarkar will be discussing the dental and oral complications of drugs used in GIST treatment and treatment of these side effects. He will also speak about methods of maintaining good oral hygiene.

 

Dr. Guhagarkar is a GISTer and active GIST advocate. He is a City Chapter Leader for Friends of Max India, a Board Member of SPAEN, the author of a Friends Of Max publication titled "A Guide to Nutrition and Holistic Way of Living with GIST" and participated as an expert in the LRG Webcast Series with "Nutrition and Healthy Living with GIST."

 

If you have any questions for Dr. Guhagarkar, please email him at nikhilspaen@gmail.com.

 

https://cc.readytalk.com/cc/playback/Playback.do?id=9ah48e

GIST and its treatment can cause a variety of symptoms. Adequate management of symptoms can improve a patient’s quality of life. Proper management can also allow the patient to remain on treatment without a decrease in dosage, interruption of treatment, or even the discontinuation of treatment. Staying on treatment as prescribed gives patients the best chance of a good outcome and in some cases has been shown to improve survival rates.

 

In this webcast, Dr. Lori Williams, Associate Professor in the Department of Symptom Research at MD Anderson Cancer Center, will review common symptoms associated with GIST and some of its treatments. She will present methods patients can use to self-manage symptoms as well as how to discuss and when to report symptoms to health care providers. 

 

Pete Knox, Senior Director of Research at The LIfe Raft Group, will also share an update on our interactive side effects management platform, SideEQ. This platform is a great tool to allow patients to optimize their overall health by learning and sharing tips with others on how to manage side effects.

 

There will be a 15 minute Q & A at the end of the presentation.

 

REGISTER: https://cc.readytalk.com/registration/#/?meeting=ugl3l6pdobvq&campaign=j7tm5oljbx36

Changes at SideEQ
06 June 2018 by admin

You may have noticed a few changes on our site - this was done in an effort to make SideEQ even easier to use. While a lot of the changes were "behind the scenes", here's a few that you'll definitely notice:

  • We've made viewing side effects even easier - Logging on to the site now defaults you to our "Side Effects Hub", where you see all of our side effects listed, and can jump straight to individual ones to see tips and questions or post your own. Don't worry - the previous "Hub" is still there - it is now called the "Tip Center" and can be accessed from the top menu.
  • We've made rating side effects even easier -  simply click on the "Rate Side Effects" button on the top menu, which will launch a pop-up window. You can do this from anywhere on the site.
  • We added a question about which side effect concerns you the most - this was done to better understand the patient experience, because we found out that while frequency and severity are important factors, there are other issues that impact side effects and quality of life as well that can lead patients to prioritize their side effects differently.  

There are more changes to come (we're always trying to make SideEQ even better), and we'll be sure to notify you as they happen! 

We'd love to know what you think of these changes - just send an email to contactus@mysideeq.org.

  Take Our Poll - Have your side effects gotten better over time?

*Only patients and caregivers are allowed to vote in polls

A- Yes
47 % 
B- No
43 % 
C - I'm not sure
10 %