Saturday 01st November 2014,
The Liz Army

Questions submitted for the 2012 National Brain Tumor Society Summit

Liz October 21, 2012 Brain Tumor Advocacy 6 Comments
Ask me about brain cancer.

I drew this during the advocacy training at the Summit.

Before I left for the National Brain Tumor Society’s annual summit I asked The Liz Army blog readers if you had questions you would like me to ask doctors and health care professionals I would presumably meet at the event.

Keep in mind, I had never attended an NBTS summit and I did not know what to expect. But I shouldn’t have assumed I would be in a position where I could run up to doctors and drill them on the cure for brain cancer. Shoot–I couldn’t even tell the difference between doctors, brain tumor supporters and staff at the hotel.

So here are the questions you asked, and my feeble attempt at answers.

DISCLAIMER: I am not a medical professional and nothing I write should be taken as medical advice.

Your brain tumor questions

  1. Why is there limited lab research being done on grade II astrocytoma? And can we please start including DNA/RNA sequencing into our treatment so labs can find which cells in particular are mutating to focus on new drugs?
  2. I want to know whether there are any new immunotherapy clinical trials out there for low grade gliomas. Also, if a cure is found one day, how will people afford it?
  3. Will this study [insert name of any study we hear about on the Internet] be hitting clinical trials soon?
  4. Find out anything you can about ‪gangliocytomas‬‬ or research and funding on ‪rare‬‬ ‪brain tumors‬‬.
  5. How can I stop the damn nosebleeds!
  6. When do [brain researchers] realistically think there will be a cure? No sugar-coating!
  7. I want to encourage brain occupational therapists to help brain tumor patients. I didn’t even know there was such a thing until I found one by accident, and it was truly helpful.
  8. Do any of those smart and experienced patients and doctors have a concrete and simple suggestion for a “Temodar diet?”
  9. I’ve heard that tall people have a higher chance of developing a brain tumor. Are we tall because we have a brain tumor (I am 6’3 and my parents are really short…) or do we have brain tumor because we are tall?

“Why is there limited lab research being done on grade II astrocytoma? And can we please start including DNA/RNA sequencing into our treatment so labs can find which cells in particular are mutating to focus on new drugs?”
— Courtney via email

The question about research being focused on grade II astrocytoma was never asked. However, I got the impression that research is focused on the grade IV astrocytoma—aka glioblastoma—and findings and potential treatments should have a trickle-down affect for folks with low-grade gliomas.

We all know that the glioblastoma is more malignant and more common than the low-grade astrocytoma, which is why research is focused on its treatment. Statistics (and my doctors) have inferred that at some point a low-grade glioma could morph into a more aggressive tumor, and at that point we will benefit from treatments focused on the glioblastoma.

As to your second question, the mapping of cancer genomes has already happened at the National Institutes of Health/National Cancer Institute through the Cancer Genome Atlas. I got to see pictures of the glioblastoma genome compared with the genomes of other cancers (breast, lung, skin, pancreatic, etc.). I wish I had taken a photo of this with my smart phone because a glioblastoma looks remarkably different from any other cancer.

This research exists, but as I heard in a presentation by Anna Barker, PhD (professor and director of Transformative Healthcare Networks at Arizona State University and former deputy director of the National Cancer Institute), once the genomes have been mapped it doesn’t mean we will know what to do with the data.

Barker said something that caught my ear and made me angry. She explained that researchers get paid money to do research, and they aren’t always willing to share their data with other facilities because they (or the institutes they work for) own those findings. They aren’t always willing to give information away willy-nilly because other people could steal their revenue sources. Barker stated that she does not agree with data-hogging and suggested a need for change in the medical community.

To us patients this sounds fucking ridiculous—and it is.

I don’t have an answer as to why all of our health care institutions don’t have the ability to include DNA/RNA sequencing as part of our treatment, but my guess has to do with money and equipment. And potentially data-hogging.


“I want to know whether there are any new immunotherapy clinical trials out there for low grade gliomas. Also, if a cure is found one day, how will people afford it? Long ways away, I know…”
@hav77 via Twitter

First, see the same response I gave to Courtney about low-grade gliomas.

As for how we will be able to afford treatment, this is not a question for researchers. This is a question about health insurance reform and public policy.

In May 2012 I helped lobby Congress on the Cancer Drug Parity Act of 2011 (HR 2746), a law that would “require group and individual health insurance coverage and group health plans to provide for coverage of oral anticancer drugs on terms no less favorable than the coverage provided for intravenously administered anticancer medications.” Laws like this would regulate how insurance companies handle chemotherapy coverage and make treatment more affordable for people with brain cancer.

This law has never left a Congressional committee, and according to GovTrack.us this law has a 0% chance of being enacted for a few reasons:

  • The bill was enacted from a previous session of Congress.
  • The bill’s sponsor (Rep. Brian Higgins, D-NY) is a member of the minority party.
  • Just 4% of all House bills in that legislative session were enacted.

At the state level there are similar bills floating around. In California we had the Access to Cancer Treatment Act (AB 1000). After passing in the state assembly and the senate this bill was vetoed by Governor Jerry Brown who directed the Department of Managed Health Care to work with the bill authors and stakeholders to find alternative approaches to solving this problem. Read his veto letter at http://gov.ca.gov/docs/AB_1000_Veto_Message.pdf.

Fortunately, the National Brain Tumor Society is forming a team of non-partisan brain tumor advocates to focus on how health care law impacts people with our disease.

Stay on top of the latest in public policy and brain tumors, and get plugged-in with what is happening in your state, by signing up to be an advocate at braintumor.org/TakeAction.

As for the status of HR 2746, the National Brain Tumor Society is in talks with an influential congressperson who we hope can champion this piece of legislation in a future congressional session. I will blog more on that when the time is right.


“Will this study [insert name of any study we hear about on the Internet] be hitting clinical trials soon?”
@beckitaboo via Twitter

The only clinical trial I heard about at the Summit was for Toca 511 and Toca FC by Tocagen.

Learn more about the trial on the Tocagen website.


“Find out anything you can about ‪gangliocytomas‬‬ or research and funding on ‪rare‬‬ ‪brain tumors‬‬.”
@ZHeatherChamp via Twitter

Sorry, Heather. I did not hear one thing about gangliocytomas. After a bit of Internet research I found that a gangliocytoma represents less than 1% of all brain tumors. But I am sure you know that.

One thing I can offer that may be of hope is the story of two families that have kids with oligodendrogliomas —a tumor that accounts for 9.4% all primary brain and central nervous system tumors.

These two families were upset that there was not enough research being put into finding a cure for oligodendrogliomas. One day the dad of one of these patients called up the National Brain Tumor Society and asked why that was the case, and what could he do about it. The NBTS said that the family could do two things.

One, they could make sure that all of their donations to the NBTS could be “earmarked” to only go to oligo research.

And two, they could help establish an oligo research fund. In order to do this the families had to raise at least $300,000 to make the fund eligible for research grant matching.

The two families got together and ran massive fundraising campaigns (with the help of the NBTS) and eventually raised more than $500,000. They are now in the process of applying for the research grants and are on the path to starting oligo-specific brain tumor research.

If someone reading this is passionate, contribute to the oligodendroglioma/oligoastrocytoma fund on the National Brain Tumor Society’s website.

To all those with “rare” tumor types, I suggest you get networking and find others with your tumor type (hint: use the Internet). Then call the NBTS or other research-focused nonprofit to develop a similar fund.


“How can I stop the damn nosebleeds!”
@jane_tara via Twitter

I have to be honest, I had no idea what @jane_tara meant by ‘nosebleeds’ so I Googled “brain tumor nosebleed” and found out that nosebleeds are a brain tumor symptom.

This sounds like a question you should direct to a doctor. However, I do recognize that that may be an annoying symptom of your disease. I don’t have nosebleeds, but I do have seizures. It took me two-plus years to get on the right anti-epileptic medication to keep the seizures at bay.


“When do [brain researchers] realistically think there will be a cure? No sugar-coating!”
@raechal via Twitter

At the Summit researchers did not suggest a cure was on the horizon. Instead, they talked about the need for more research funding so a pathway could be made toward better understanding the brain and lead to a cure one day.

During my advocacy training David Arons, the National Brain Tumor Society’s director of public policy, mentioned that in the last 30 years only four treatments have been developed to fight brain cancer. ONLY FOUR TREATMENTS. OMG!

I took that information as a strong call to action to get involved and become a brain tumor advocate. Being an advocate is as simple as signing on to letters in support of brain tumor research. Sign up to be an advocate at braintumor.org/TakeAction.


“I want to encourage brain occupational therapists to help brain tumor patients. I didn’t even know there was such a thing until I found one by accident, and it was truly helpful.”
— Katie via Facebook

I didn’t have a chance to encourage doctors to do anything in particular, but you make a great point.

All of us should keep our medical team informed when we find something helpful. After my second brain surgery I was sent to occupational and physical therapists to relearn how to walk and handle daily life functions like using the stairs, stepping on to curbs, opening car doors, etc. I found this therapy to be immensely helpful.


Do any of those smart and experienced patients and doctors have a concrete and simple suggestion for a “Temodar diet?”
— Ingrid via the web

Temodar management was never discussed by medical professionals during the summit. However, some of us patients and advocates discussed the use of Temodar and compared our experiences.

Like usual, experiences ranged from “it wasn’t as bad as I thought it would be” (i.e., my experience), to “my dad was getting radiation and Temodar at the same time, it was too much, so he stopped Temodar after three months.”

My advice: When I started on Temodar I talked with an oncology nutritionist and followed her advice for a chemotherapy diet. This included eating simple foods that were easy to digest during the times I was on Temodar. This included things like pasta, smoothies, bananas, etc. She also suggested I try to stay away from complicated foods like whole wheat, oatmeal, and things with super strong flavors and spices.


“I’ve heard that tall people have a higher chance of developing a brain tumor. Are we tall because we have a brain tumor (I am 6’3 and my parents are really short…) or do we have brain tumor because we are tall?”
— Patrick via the web

Patrick: I love you, but you are crazy.

I did a web search on this topic just to humor you and read an article about this potential correlation. The summary suggested that there are more cells in the body of a larger person, hence more of a chance for those cells to turn cancerous.The full study can be found in The Lancet Oncology journal.

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  • http://twitter.com/hav77 JV

    Thanks Liz. Really appreciate it. As to point #1 regarding the lack of info sharing, it’s not surprising. That proprietary data is gold and won’t be given up so easily. Just the way the medical research industry and capitalism works. Is it understandable? Yes, but like you, I get angry about it as well.

    John aka @hav77

  • http://twitter.com/hav77 JV

    Regarding Point #7, I’m seeing a neurologic physical therapist right now. Having a brain tumor, the brain can go through a lot of trauma from the tumor itself, the surgery, chemo, radiation, and meds which can cause the brain to have trouble in processing all the information it receives. The outcome is balance issues, trouble with concentration, mental fatigue, etc…The hope is that the NTP will help rewire my brain so that it can process information it receives from my sensory systems (sight, touch, hearing) and relieve the aforementioned symptoms.

  • Scott Holloway

    Liz- You. Are. Awesome. That is all.

    Scott

  • Patrick Macedo

    Thanks Liz, you rock! Believe it or not there is a 70% correlation between average height and nervous system cancer incidence by country. Your “number of cells” explanation makes sense although if you saw the size of my head you would think that my brain is smaller than average :-) Cheers! Patrick

  • http://hopeforheather.wordpress.com/ hopeforheather

    This is AWESOME! Thank you for your time and motivation and passion for this!

  • Ingrid

    Hi!

    Simple foods seem like a good idea. So far I have received an information note which says that chemotherapy in general often make you feel sick and suggests eating crackers. Not a lot of information! I’ll definitely try out the pasta, banana, smoothie kind of menu. What do you mean by complicated foods? Fibre rich foods? And did you only concentrate on getting enough calories/energy, or were you advised to consume certain things for their vitamins, fatty acids, minerals etc as well?

    Hrmf. This continuous stream of questions to you never seems to stop, does it?…. Thank you so much for all of your answers, Liz!

    The brain tumor/ height discussion here made me think of a bit of a self ironic scientific report recently published in New England Journal of Medicine. In the article it was demonstrated how an individuals intake of chocolate correlates with their chance of ending up as a nobel price laureate. There’s nothing wrong with the scientific methods used….. And it -is- all true.

    http://www.reuters.com/article/2012/10/10/us-eat-chocolate-win-the-nobel-prize-idUSBRE8991MS20121010

    Wishing you a great week!
    Ingrid