My awake-craniotomy took place 4 years ago today. Things that would have been long-term goals 4 years ago are now just things on my to-do list for this month. Things that I never thought I’d see happen are now daily occurrences, in the best way possible. I got better, but not everyone does. I had a great support system, the financial resources to weigh my options and select my surgeon, and the time to do so. My latest MRI was last month, and everything is still stable. Even so, every day is a tightrope walk of accounting for sleep, taking medication, and managing symptoms. My life wouldn’t be anything like it is now if it wasn’t for this patient experience, and I wouldn’t change it.
Community engagement has always been how I’ve processed. We’re talking about the financial impact of being treated for a brain tumor during tonight’s #btsm chat (6pm PST/9pm EST) – all are welcome to join, share, and learn.
Here’s a video of me giving an update four days after surgery, four years ago for a fun flashback.
August’s #BTSM Chat talked about making a map for survivorship mode: a guide to the what’s next and how to’s of life after treatment. As far as Liz and I could tell through our research, there is no standardized survivorship plan for brain tumor patients. The chat for the month of August also announced some new and exciting things for #BTSM – we created a #BTSM Twitter chat account, and a #BTSM Community website is in the works. Keep checking the site for updates!
T1: Do you consider yourself or your friend/family member a survivor at this point?
- How do you define survivor?
T2: How many of you talked with your doctor to determine a survivorship plan after diagnosis/treatment?
- Did you know that there’s such a thing as a SURVIVORSHIP PLAN?
- What should a brain tumor survivorship plan include?
T3: What kind of medical related things do you want survivors to know to follow up with after treatment has ended?
- What are some non-medical related things that you think brain tumor survivors need TO DO after treatment ends?
T4 (bonus round): What ideas can you contribute to a survivorship plan for your specific tumor type/locations?
Two resources for creating generalized survivorship plans that Liz and I came across were The Livestrong Care Plan and Journey Forward. Let us know what you have done to create your survivorship plan, and tune in on September 7th for the next #BTSM chat.
#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:
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!
June’s #BTSM chat featured Dr. Michael McDowell, a neurosurgical resident at the University of Pittsburgh, as our guest moderator. Dr. McDowell attended Columbia University for medical school, and Barrett, The Honors College at Arizona State University for undergrad, where I currently attend. Dr. McDowell kindly reached out to me as an ASU alum, and inquired about #BTSM chats after having read about them in an article.
He shared during tonight’s chat that he believes in “the utilization of technology and social media to improve the care and communication with patients” because “Technology is highly utilized in the neurosurgical field, almost more than any other field, but not outside of the OR.” When asked how much of his training focused on developing interpersonal skills with patients, Dr. McDowell responded that “The only formal training is a short course at the start of residency. Everything else is based on med school or observing.” He continued to say that being in such a small field of medicine “breeds a pressure to surgically cure as many as possible at the cost of interpersonal relationships sometimes. The worlds greatest neurosurgeon [later identified as Robert Spetzler] spends about 5 seconds with each patient, but operates on 8 a day. Would he be better if he spent twice as long with half as many patients? Or should he try to heal the body over the heart? The answer is complicated, and some surgeons lean more in one direction than others.”
- T1: Where have we failed you?
– Do people feel that the short amount of contact you may have had as a failure?
- T2: How was the outcome of your surgery compared to the expectation?
- T3: What should I tell my patients to expect? (this)
Join us next month for July’s #BTSM Chat on 7/6 moderated by @TheLizArmy!
The American Society of Clinical Oncology annual meeting has released its 2014 Social Oncology Report, which details cancer conversations in niche communities, awareness, and pop culture over the past year. Breaking Bad was this year’s top pop culture highlight, naturally. There was a 52% increase in the total number of tweets from 2012 to 2013 at the American Society of Clinical Oncology annual gathering, convincing more and more physicians and researchers that social media matters in the context of cancer.
Waiting room conversations about cancer have migrated to Twitter. The power of hashtags, as detailed by Dr. Matthew Katz, a radiation oncologist, and regular attendee of #btsm chats, takes place on page 13. I am ECSTATIC to announce that #btsm (brain tumor social media) finished SECOND as the most frequently used cancer-related hashtag on Twitter over the past year. This means that people from around the world have been having meaningful conversations about their experience with a brain tumor, research, and more thanks to #btsm connecting them with each other. #btsm chats matter (Join us this Sunday at 7pm PST)! The brain tumor social media movement owes the history of our hashtag to the incomparable #bcsm community (breast cancer social media). Both of these grassroots efforts and communities have brought people together for support and information about their respective diseases at anytime, from anywhere in the world, for FREE. We both win, big time.
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!
This past Saturday was the National Brain Tumor Society‘s 2014 Phoenix Walk. There were 1,300+ people in attendance and the event raised $126,000 towards research run by the NBTS. The Liz Army‘s face was plastered on a banner to represent the voice of survivors and patient advocates. I sent her a text with a selfie as evidence. I really liked the set up of the event – well organized tents with clear and simple banners. I was joined by two close friends who were surprised that I was even awake enough to walk. I got up at 5:55am to get at the event early and help out – I hadn’t been awake that early since I took the ACT. I was able to talk with the woman running the event and disperse #btsm handouts too, which will hopefully provide a new support system for those in attendance.
All of the survivors stood on stage for a few minutes and took photos. It was easy to identify other survivors for the most part because we were all given gray t-shirts to wear. I was a bit disappointed that there were not many adolescent/young adult survivors present, though. I wasn’t able to interact with all of the other survivors who were in attendance because I tired out after 3/4 of the walk and left early to rest. This walk was comprised of the largest brain tumor population that I had come in contact with at an event, and I’m glad that I was able to attend.
I’ve had more headaches and seizures recently, so that’s all for now.
This month’s #btsm (brain tumor social media) chat theme explored the impact that brain tumors have on traveling.
- T1: What type of accommodations do you request while traveling or once you arrive at your destination?
– T1 continued: How have people typically responded to your or a loved one’s accommodations?
- T2: Have you run into any unforeseen complications due to medical conditions while traveling? If so, how did you handle them?
- T3: How have your experiences been when forced to cancel due to medical issues?
– T3 continued: Some airlines, bus + ticket companies offer insurance tickets. @Cangela25 can shed more light on the issue if you’d like to follow-up
We were joined by Dr. Matt Katz (@subatomicdoc), a radiation oncologist, and regular social media chat participant last night. As always, I am grateful that a physician takes the time outside of his work schedule to learn more about the lives and challenges of his patients.
March’s #btsm (brain tumor social media) chat has been postponed one week to take place on 2/9 due to the Twitter crash during the Oscars last night. We got through introductions at the start of the chat before the feed started to cut in and out, and a group consensus decided that it was best to reschedule so that all members could fully participate in the conversation. Join us at the same time (7pm PST/10 EST) and same place (tchat.io/rooms/btsm) next Sunday on 2/9 when we discus this month’s #btsm chat theme – traveling.
This month’s #btsm (brain tumor social media) chat theme was scanxiety. After some issues on the tchat.io/rooms/btsm server, we switched over to tweetchat/room/btsm for the night to better view the live chat stream.
Scanxiety. Noun. [skan-zi-etee]
1. Uneasiness waiting for ones scans after cancer treatment
- T1: How does your scanxiety manifest?
– Has your scanxiety always presented in the same fashion, or has it changed over time?
- T2: What helps distract you leading up to scans, and waiting to hear back about results?
We will be back in business on 3/2 for March’s #btsm chat. Please, join us!