Tuesday, May 20, 2008

In the news

We'll be hearing and reading a lot more about brain tumors in the next couple of days, after Sen. Edward Kennedy's diagnosis. News of any new cancer diagnosis hits me and Steve hard these days, as we've gained some first-hand understanding of some of what the person and his or her family and loved ones are facing. News of another glioma (about 9,000 diagnosed in the U.S. each year) is even harder. Empathy hits overdrive.

Kennedy has a malignant glioma in his left parietal lobe. The parietal lobe is the top center of the brain.

For comparison, Steve has a malignant glioma in his brain stem, which is in the deep center of the brain.

So, they have similar tumors but in different locations and with different symptoms. For example, Kennedy's most obvious symptom, apparently, was the seizure he had this weekend. In Steve's case, the brain stem doesn't seize, so for now we don't have to worry about seizures. Some tumors of the parietal lobe are operable (though I'm not sure about Kennedy's). Most every expert agrees that tumors of the brain stem are inoperable.

I've already read a number of news stories about Kennedy's diagnosis. Every story includes the same statistics we've known for months -- patients with grade 4 gliomas have a grim outlook, about a year of life after diagnosis. Those are based on statistics and averages, and many doctors will tell you that statistics currently quoted don't reflect the most recent life-extending advances in medicine.

I'm sure we're among many families coping with brain tumors who hope for good to come of Kennedy's tragic condition. We hope that his doctors and other health-care providers find the right mix of treatment to kill those awful tumor cells and to extend his life long past the quoted statistics. And perhaps his brain tumor will increase awareness of brain cancer and possibly even funding devoted to researching cures.


Anonymous said...

Tyra, thanks for commenting on this. Every time the story was mentioned, I thought of you guys, wondering what your response to the news would be. Unfortunately you are in a very unique position to empathize. We shouldn't even know how to pronounce glioma!

Much love. Mary (Kevin, and Alex)

Darla said...

Hi Tyra,
I know you're a wonderful researcher and have probably already seen or heard about this, but I thought I'd copy and paste one part of a story about Kennedy I'd just read (which talked about what treatments he may opt for):
"Adding the colon cancer drug Avastin to standard treatment. Avastin chokes off tumors' blood supply, and initial studies suggest it can help shrink gliomas. Whether that helps survival isn't yet known, but Black says even though this use is experimental, more and more specialists are prescribing it right after diagnosis."
Anyway, just wanted you to know that I'm thinking about you guys and will continue to pray for the best possible outcome.
P.S.: Perhaps one day you can show me how you create such fancy layouts on your blog. :)

Tyra said...

Thanks for the Avastin note, Darla! It is one of the tools I've read about, though I'm not sure if it can be used in addition to Accutane. Your note is a good reminder that we need to ask that question on the next visit! I hope we keep discovering more possibilities soon.

Love, Tyra

Chitnis and Chahal said...

When I first heard the story that Ted Kennedy had a seizure, I cursed under my breath while driving and called Rahul and said, darn, he has a brain tumor. Its the one of the most common causes of seizure in an older person of 76years. Lo and behold two days, later it was announced that he has a Glioma and since they are calling it malignant, I can only assume that its a grade III or IV.
Needless to say Steve was the first person I thought of. In fact I told the person next to me in clinic, darn, I have a friend with brain tumor. Just got back from our trip but will call you. Have been religiously reading the blog and keeping up with news of Steve.
Hang in there guys.
Tyra, as you said, I hope that there will more impetus for research into brain tumors and other cancers.
Ted Kennedy is not a statistic, neither is Steve, they are both fighters and I know they will beat the odds. We are as always praying for you guys.

Anonymous said...

I agree, despite the bad news about Ted Kennedy specifically, I too hope it will bring more focus and attention to this area.
I am so glad to hear that Steve's breathing is better.
I continue to pray that God guides the minds and hands of the doctors, to do what is best for Steve.
God bless,

Wendy Curran said...

Hi Tyra & Steve,
I was wondering what your thoughts would be surrounding Kennedy's announcement. My prayer is that his fame will help bring gliomas into the spotlight and the medical community will rally to help find a cure! I think of you guys all the time and offer up prayers for healing and peace. God bless you all. Wendy Curran

Tom said...

Hola Steve & Tyra -

Just was thinking of you, and I hadn't checked in for a while, so here I am. Good to hear that the meds aren't too nasty - I hope whatever respiratory junk you have leaves pronto as well.

Just realised it has been 20 years since we met at ATO Steve....I think we need to have a reunion in Ann Arbor in 2011 - dig?

aswewalk.com said...

I'm glad to have found your blog. My sister in law had a siezure on our couch a few weeks ago, and now has been diagnosed with GBM. She is young and has young children. THanks for being willing to encourage other through your story.