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  • Writer's pictureTiffany Crowe

Knowledge is Empowerment

"The Beautiful Thing About Learning Is Nobody Can Take It Away From You" - BB King

I attended my first support group on Saturday at Henry Ford West Bloomfield. During the 2 hour session, Dr. Tobias Walbert talked about topics such as diagnosis & classification of brain tumors and clinical opportunities available to those with specific diagnosis. The information below was all interesting to me and led me to want to share with you.

**Disclaimer - I am not a doctor. The information I am choosing to share is an interpretation of the notes that myself & Curtis took while listening to Dr. Walbert speak. I'm here if you think our interpretation of something was incorrect, just let me know :) **

One of the first things Dr. Walbert discussed was the concept of brain tumor banks. These banks contain tumor tissue donated by patients who sign a release form in order to participate in research. Henry Ford has one of the largest brain tumor tissue banks in the country (go us!), which in my mind more research = greater quality of life = more survivors.


Once diagnosed with a brain tumor, the genetic markings of the tumor are researched at to determine course of treatment to take for the type of tumor. This also helps with diagnosing the grade of the tumor, which is something established through the World Health Organization (WHO) and is constant across the world.

In my situation, I am diagnosed with Anaplastic Ependymoma Grade 3, and now my course of treatment contains radiation & chemotherapy. In non-doctor terms that I jotted down, chemo/radiation is done with the goal of damaging the DNA of the tumor and to prevent an enzyme known as MGMT from 'cleaning up' and repairing the tumor cells. That is something we obviously do not want. What I forgot to ask is how do we determine the level of MGMT each patient has? If someone's MGMT enzyme is actively working to repair the tumor cells, then my understanding is they would not do as well with chemo/radiation alone. Dr. Walbert mentioned immunotherapy, would this be used in these cases along with the standard of care?

For a while, it was thought the brain didn't have much of an immune system but found certain types of cells which act as an immune system (T & B cells). Cancer cells, however, have ways of 'hiding' from the fighting cells and this is how they get into the brain. When cancer grows, the immune system is suppressed which leads to the idea of using immunotherapy as a form of treatment. The question we want answered is how can cancer cells become more detectable? How can the body have night vision goggles against those cells?

Clinical Trials/Treatment Options:

So what is immunotherapy? I'm glad you asked because I googled! According to, "A type of biological therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. Some types of immunotherapy only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG), and some monoclonal antibodies." Essentially, the idea of using our immune system to treat tumors. There is a FINE LINE though, we don't want the immune system to attack itself & cause autoimmune diseases in the body. Immunotherapy does help T-cells attack tumor cells in other areas in the body but the point of clinical trials is to determine the success of treating brain tumor cells.

Immunotherapies mentioned on Saturday include:

  • Vaccine trials for newly diagnosed with GBM tumors

  • The brain protects itself with a lining so how can the vaccines enter?

  • Lymphocytes are simulated which allows the vaccine to enter

  • Opportunity for injections to be made during surgery directly into the tumor or the area the tumor existed

  • Opportunity to infuse the virus into the brain by pumping a hole into the tumor. (I don't know if this is the same as the one above so don't assume!)

  • This treatment requires time in the ICU and increases the patients' chance of infection.

Aside from immunotherapy trials, here are a few other locations across the world participating in many other trials. Facilities such as Duke, MD Anderson, Johns Hopkins all offer different trials depending on diagnosis. Like everything in life, there are pros & cons associated with participating in clinical trials, which if you are considering one then it's up to you to weigh those when making your decision. Also taken into consideration is if you, the patient, are a good candidate to participate. When applying for the trial, the physicians take a look at the trial criteria and then at your personal criteria to determine the best match based on current performance & status (how well the patient is doing), and when a decision is made, you the patient will be notified. It is then my understanding that the patient continues on the trial unless their is evidence that the tumor is coming back or your body is not responding well to the trial. If the trial closes down, I think it was explained that you can continue until the drugs/therapy/resources are no longer available on the market for the duration of the trial.

How are clinical trials then incorporated into standard practices of care, you ask?

The third phase (I suppose you can count everything mentioned above phase 1 & 2) is the data from the clinical trial going to the FDA to prove that it is successful.

Not to be selfish, but what does this all mean for ME?

As for the moment, I am not looking into participating in any clinical trials. Also, due to the rarity of my tumor, there aren't a lot offered. Trials are typically done for those more common tumors as there are many more subjects available to participate. Exactly how rare is my tumor? Take a look at the pie chart below from the CERN Foundation website. ependymoma's account for 1.9% of adult primary brain tumors. Yay for being rare!

So now that we learned all about treatments that don't necessarily apply to my case, let's learn some interesting information about what can relate to me.

5 Interesting Facts I Learned About Tumors on Saturday:

  1. The probability that a low grade ependymoma tumor that is completely removed (AKA full resection) can return as a higher grade ependymoma tumor is rare, but does occur (Yay for being rare x2!)

  2. Brain tumors rarely spread to other parts of the body, but high grade tumors in the brain can have originated in other areas such as lungs or breast and spread to the brain. The tumors present themselves differently so they can be easily identified by the pathologist as coming from another part of the body.

  3. Brain Cancer. Those two scary words. This is something that happens to the genetics of the cells, or the evolutionary process of those cells. The presentation is different in younger patients than in older patients. Brain cancer is not simple genetics, it is not hereditary.

  4. Lower grade tumors tend to present themselves more with seizures, high grade tumors tend to present themselves more with diminished/altered mental capacity.

  5. MRI is to brain tumor patients as blood tests are to diabetic patients - BFFs.

Last but not least, some healthy tips to keep in mind when going through treatment:

  • Maintain a healthy diet

  • There are some foods better for your body when taking chemo than other foods which I still need to research

  • Don't become obese.

  • Ketogenic (low-carb, high-fat)/metabolic (focused on increased metabolism) diets

  • Veg out on veggies

  • Limit red meat

I would like to end this post with my favorite take-away of the meeting. As we all know, I love steroids. As I know and some of you may know but some may not, steroids increase your appetite, which can be helpful in some situations (not mine).

  1. Steroids are not an excuse for eating junk food, HOWEVER;

  2. Focus on your diet when you are weaned off the steroids. Once off, then worry about losing the weight hat you may have put on during the medication.

At this time, Curtis was taking notes so I could get a coffee. I made sure he wrote it down, circled it, starred it, then told him that it's OK for me to have ice cream every day if the doctor said to focus on losing the weight when I'm off the meds :) Just kidding. But I did buy 2 chocolate covered Oreo's from a woman selling them for the Head For The Cure run. Hello.... how rude would I be to pass up food for a donation that goes to a great cause? It was not my day to be a jerk.

This was a different type of post, lots of information that may or may not be helpful. Just think how much smarter you are after reading it though? I want to reiterate, this information is an interpretation of my notes, not a document provided by a doctor. Please do with it as you will.

For additional information regarding ependymoma tumors, check out the following website:

Collaborative Ependymoma Research Network (CERN) is committed to improving the care and outcome of people with ependymoma through community support and research efforts.


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