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GBM Grade 4

dvk
Posts: 2
Joined: Apr 2015

Hello.  My mom was just diagnosed with GBM.   Surgery was 4/2/15.  Friday we have an appointment at MD Anderson for a 2nd  opinion and treatment options.   My mom is a healthy 70 year old.   No other medical issues.  Her symptoms were tingling on her left arm and leg.  Blurred speech on a Saturday was when she went to the ER and they found the tumor.  After surgery, she has weakness on her left arm and leg, some memory loss.  Hopefully, she will start treatment in the next couple of weeks.  Does anyone have any guidance on a particular treatment that has worked?  Has anyone done a clinical trial?

debski13
Posts: 2
Joined: May 2015

My mom was also recently diagnosed.  She noticed something wrong the morning of 11/3/14 when she was playing a game on the computer and suddenly she couldn't read the words. She knew she should have been able to read them, but the letters meant nothing.  She went to find my dad and said "something is wrong" (they assumed she was having a stroke) so went to the hospital and on the way, she had a siezure.  The MRI showed a mass in her brain, but they didn't initially think it was cancer. they thought maybe it was something like a stroke and decided to keep an eye on it.  later in the month, they determined that it was cancer and they scheduled her for surgery 12/15/14.  it was with the surgery they discovered it was a grade 4 tumor.  Mom was the walking picture of health.  She was on low dose asprin (preventative for heart issues running in the family), calcium and fish oil.  That's it.  Never any major illnesses, and overall in great health.  Since the surgery (the surgeon was confident he removed everything he could see, but they'll never declare her "cancer free" due to the nautre of this cancer).  2 MRI's since the surgery - neither show any re-growth.  They did discuss the possibility of a clinical trial (which would have involved taking the tumor and somehow mixing it with her own white blood cells to create a "vaccine", but her tumor wasn't big enough (we feel blessed that they caught the tumor early - it was about the size of a quarter) but this clinical trial seemed impressive.

Mom's congitive skills are slowly getting worse. She still cannot read (unless she tries very hard and says the letters in her head, then she can put it together).  She does fantastic while on the 5 days of chemo at home (which the doctor says he's never heard before).  It's the 3 weeks after that she's miserable.  Lots of fatigue and nausea.  Nothing tastes good, and most food smells make her nauseated.  As a result, she mostly eats toast and maybe en egg once in a while. She's lost a lot of weight (more than she should).  She can't drink boost or ensure as they make her sick.  Salty foods, sweet foods - forget it. She says even cheese is too salty.

My question to anyone reading is any thoughts on food issues such as this and what has worked for you or your loved one?

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