July #BTSM Chat – Addressing Patient Symptoms and Clinical Trials with The National Brain Tumor Society

#BTSM chats teamed up with The National Brain Tumor Society (NBTS) for July’s chat to discuss addressing patient symptoms and clinical trials, and, we even made an awesome, special logo for the event:

july chat logo

NBTS made a really cool storyboard to recap highlights of the chat here if you’re interested in seeing more of the full conversation. I was off the grid and in Montana when this month’s chat took place, and The Liz Army did a fantastic job moderating. NBTS also launched a new, and brief survey (that will take less than a minute to complete) to gather patient/caregiver perspectives which I encourage you to take here. When asked about the quantity of benign vs. malignant brain tumor clinical trials, NBTS responded that: “Clinical trials can be for both malignant and benign…often more in malignant space, though. early phase clinical trials evaluate safety and identify evidence of biological drug activity, such as tumor shrinkage. later phase efficacy trials commonly study drug clinical benefit, eg increased survival or improvement in symptoms.”

  • Q1: [for NBTS] What does the term “clinical trial endpoints” mean?

– A1: “Endpoints are outcome measures that allow us to decide whether a treatment provides clinical benefit” – NBTS

  • Q2 [for everyone]: What are the top symptoms that you think should be addressed in brain tumor drug development?

– A consensus answer was a drug that could simultaneously shrink tumors while easing seizure and headache symptoms would be ideal, as well as one that does not cause tremors, which Temodar (a commonly used oral chemo pill for brain tumors) does. In a perfect world, this drug would also not cause a change in appetite and minimize the need for steroids, eliminating moon face.

  • Q3: Have you (or your loved one) taken part in a clinical trial–if not, what has prevented you from taking part in a clinical trial?

– Many participants responded that a clinical trial was never discussed, nor offered to them.

  • Q4: If you DID participate in a brain tumor clinical trial, how did you find out about it?

– One of the better resources to search by tumor type is clinicaltrial.gov if you’re interested in finding one

  • Q5: If you had the opportunity to help give input on the development of brain tumor clinical trials, would that be of interest?

NBTS is currently working on their own clinical trial finder (nice!), where people will be able to search by tumor-type. In the meantime, the Alliance for Clinical Trials In Oncology is a way for patients to get involved in developing clinical trials that matter. Those involved can:

  • Attend and participate in scientific meetings
  • Review study concepts and protocols
  • Assist in designing study accrual strategies
  • Develop plain language study result summaries
  • Make presentations to interested groups of scientists and clinicians

Tune in for the next #BTSM chat taking place on August 3rd, same time, same place!






May #BTSM Chat – Brain Tumor Awareness Month

May’s #BTSM chat focused on events and campaigns that are taking place this month, Brain Tumor Awareness Month. We discussed ways to get involved with The National Brain Tumor Society (NBTS) throughout the chat this month instead of using specific topics.

Our chat’s very own @TheLizArmy, @SarahFunes, @ashmt as well as @mAssKicker1 are all in DC this week for NBTS’s Head to the Hill event. The event teaches advocates about key public policy issues, and provides them with an opportunity to speak with congressional leaders. These conversations aim to raise awareness of the needs of the brain tumor community, and the event itself brings together brain tumor advocates from across the country.

Tuesday, May 6th (TODAY) was Congressional Call-in Day from 9am to 5pm. While the advocates mentioned above are in DC, the rest of us could join from home by calling our legislators’ office and talking with their staff about the same issues. The NBTS’ website had a script with prompts to follow. The goal is that legislators would hear from the advocates in DC, and then hear from us. It’s a double whammy.

The NBTS also has a campaign called Sharing Our Knowledge. The campaign wants to know what you needed to know before, and what you can tell people now, post-diagnosis/during survivorship. They are using the hashtag #BTVOICE from May 18 – 31 on Twitter, but you can submit your responses through their website here as well.

Additionally, NBTS is hosting a video chat on May 22nd called Frankly Speaking About Brain Tumors from 2:30-3:20pm EST. The chat wants to help people learn how to make empowered decisions for their treatment, and gain an understanding of current brain tumor research and treatment options. It would also like to help people find out how they can get involved in their communities and take action for brain tumor advocacy all year long. You need to fill out a form with your name and email address in order to receive an invitation to the chat, and you can do so here.

The next #BTSM chat will take place on June 1st. Join us!