38 Year Old diagnosed with Ependymoma

Somehow I always think of Ependymoma attacking young, innocent children.  The CERN Foundation’s latest newsletter, though, features a story about a newly wed 38 year woman who learns that she has Ependymoma.Ependymoma is a rare type of primary brain or spinal cord tumor found in adults and children. Primary brain and spinal cord tumors are those that start in the central nervous system (CNS).

Here’s how the article starts out: “Last March was the happiest time of my life. I had only been married eight months and my husband and I were trying to get pregnant with our first baby. We were committed to an intense workout program to get in the best shape of our lives before I got pregnant. We were so excited for what the future held and nothing was going to get in our way.”

Then she found out that she had tumor in her spinal cord! For the rest of this heart-wrenching story go to: https://cern-foundation.org/?page_id=5248

The 2014 American Society of Clinical Oncology Annual Meeting

For those of you particularly interested in topical brain tumor research, here’s a link to an article by Tom Halkin about the 2014 American Society of Clinical Oncology Annual Meeting.

Since this sounds important, I’m sure you have a lot of questions, e.g.

Question: “Was it a BIG meeting?”

Answer: “Yes, with more than 30,000 attendees from across the oncology field, the American Society of Clinical Oncology’s (ASCO) Annual Meeting is one of the largest and most important yearly gatherings in the field of cancer research.”

Question:  “Were there lots of important presentations?”

Answer: Yes, the society estimates that it received 5,530 proposed presentations, of which, 2,900 were presented at the meeting as a talk or a poster.

Question: “What was the biggest news?”

Answer:  According to Halkin’s article in the National Brain Tumor Society Website, “Immunotherapies" stole the show.

Question: “How so?”

Answer: “A class of cancer treatment, called immunotherapies, that harness the power of the body’s own immune system to attack cancer cells (we will have more about this treatment modality later this month on the blog), were all the rage at ASCO. Much of the buzz was created from results from skin cancer trials, where much of the early studies into the viability of this type of treatment approach have been performed.”

Here’s a link to the NBTS article:  http://blog.braintumor.org/897/

John

PS - Yes, this is a lame picture.  

“…She left after hearing the news”

This post on the Inspire.com website is so sad, made me so upset and depressed I just had to share it. 

“I just had my two year check-up. The good news is that I wasn't having surgery the next day like last time. But a smaller new one popped up in a bad spot that no surgery or anything can be done because of the location. Nows the part I'm just lost for words, everything. My wife was told and said she couldn't help me because she couldn't take the stress or see someone hurting. So she left.”

You can read his entire post and the heart-felt follow-up comments here: http://www.inspire.com/groups/american-brain-tumor-association/discussion/lost-for-words-she-left-after-hearing-the-news/?ref=as&asat=171285500

FYI - you need to register with the site (free) to read all this.

John

PS - I don't know if this is the right visual, but I'm guessing this guy feels abandoned right now.

Copyright: <a href='http://www.123rf.com/profile_pictureguy66'>pictureguy66 / 123RF Stock Photo</a>

2014 American Brain Tumor Association Patient and Family Conference

I just read the email announcement of this year’s ABTA “Patient and Family” conference: http://hope.abta.org/site/TR?fr_id=3070&pg=entry   The email said “The ABTA’s annual patient and family conference is where patients, families and caregivers come together to learn more about the latest advances in brain tumor research, treatment and care.”

While that’s all true, it somehow seems to underplay the importance of the event. Having attended the event I can tell you that I didn’t understand much of it – the displays about new protocols, the layman explanations of the complexities of the diseases or event which presentation I should attend. For example, this year should I go to “Meningiomas: Update in Treatment and Care” or the session on “Low Grade Tumors: Update in Treatment and Care”? Beats me.

Somehow the breakout session on “Brain Tumor Symptom Management” with topics like …

• “Management of Fatigue and Sleep Disorders: What Every Patient Needs to Know”
• “Understanding Seizures,” and
• “Strategies for Coping with Cognitive & Personality Changes”

…all seem really important.

But when I went, the most impactful sessions were the patient presentations. The retelling of their struggles and pain and tenacity resonated at an emotional level that, without giving me false hope, told me that my feelings were valid, and felt by many others.

If you are a victim, a victim’s friend or a caregiver, take a long look at the website an program.

Got Brain Tumor? Get Back to Work! (Maybe…)

Getting back to work after a brain tumor diagnosis is, well, a bit complicated. So folks can return to work. Others can’t and prefer to focus on rehab. Some want to return, but need a less demanding job.

The Inspire website has a good discussion thread going on all this along with their tips on how to approach your work life after a brain tumor diagnosis: http://www.abta.org/brain-tumor-treatment/brain-tumor-support/returning-to-work.html

Copyright: <a href='http://www.123rf.com/profile_djma'>djma / 123RF Stock Photo</a>