Thursday, March 28, 2013

Cold Sores & Brain Damage

I just read an article posted on which reports that “There’s growing evidence that Alzheimer’s may be caused by the herpes simplex virus 1 (HSV1), the same virus that causes fever blisters or cold sores on the face and mouth.”

I don’t want to believe that a simple cold sore can cause so much damage.

The article goes on to say that “It is not believed to be caused by the other herpes simplex virus—HSV2, genital herpes, which is transmitted sexually.” I'm not sure if that's good news or bad news. Since I don't have herpes, does that mean I'm lined up to get more bad brain tumor news? Or, if you have had HSV2, etc. you have a chance of even more horrible problems?

Another question that popped into my mind was "How would this happen?"  According to the article, “HSV1 attacks the immune system, particularly the peripheral nervous system. Once it has attacked, it never leaves the body but lies dormant and occasionally reactivates, causing a flare-up of blisters or enlarged lymph nodes, especially when set off by a trigger, such as stress or fatigue.”

Interestingly, or perhaps disturbingly, there is also a lengthy conversation on ABTA’s Inspire web site that tosses in sun overexposure into the conversation about the connection between cold sores and brain tumors:

Since I am a melanoma cancer survivor, this just adds fuel to my late-night worries.

One victim wrote that “I was told when I was first diagnosed that there is about a 20% higher incidence in Brain Tumors in the Southeast US. I was also recently told at Duke University that airline pilots used to have a higher rate of brain tumors also. I know that I personally was both a Lifeguard and a sun worshiper, I got a really bad sunburn in college once, on my face and lips and have had many, many years of cold sores, just about every year for twenty years or so.”

My reaction to this is that we are all searching for an answer to the question of “Why did I/my spouse/my child/my loved one get this nasty, unforgiving, relentless and criminally powerful tumor?” And in that quest, we will leave no stone unturned, no rumor un-investigated and no fact un-dissected.

Image credit: <a href=''>blamb / 123RF Stock Photo</a>

Wednesday, March 27, 2013

The OncoLink Cancer Blogs

I like cancer blogs that provide a mix of opinions: victims, survivors, medical practioners, caretakers, etc.  The OncoLink Blog - - nicely gives a voice to all those folks.

For example, there’s a heartfelt post by Dr. Robert Lustig entitled One of the Hardest Things I Ever Had to Do which resonated rather high on the “uh oh” and honesty scale.

Carolyn Vachani, RN, MSN, AOCN has a insightful blog posting on her “cancerversary” which I rather like.

And there’s a review of Greetings from CancerLand: Writing the Journey to Recovery by Alysa Cummings.

For me, The OncoLink Cancer Blogs are a nice mix of voices, insights and reminders that we are not alone.


In Full Disclosure: Alysa Cummings did give Chief Complaint, Brain Tumor a nice review and I’m sure that has prejudiced me.

Monday, March 25, 2013

Book Blogger Review Schedule

My brain tumor journey book - "Chief Complaint, Brain Tumor" - will be reviewed by fourteen (14!) different book blogger reviewers over the next two weeks. Should you be interested, here's the line-up of the blogs and the dates their reviews will be posted. 

If you read it, I’d love to get your feedback!


Friday, March 22, 2013

Inspire’s “Experts by Experience”

I’m always moved by stories of other victim’s brain tumor journeys. Inevitably they’re stories of shock, trepidation and courage.

You can read a bunch of those stories at  Here’s the posting describing this effort:

“As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column.

I am pleased to announce that today we are releasing a compendium of these stories in a new special report, Experts by Experience: A compilation of patients’ stories.

I hope you find these stories as meaningful as I do. They illustrate what all of us know to be true: patient-centered care is important not only to patients and caregivers, but also to physicians and the future of medicine. Reading these stories gives me great hope about the direction we are headed.

I hope you read these stories and share them widely. We are grateful to everyone who contributed to this compilation.

Together, we're better.

Brian Loew
Co-founder, Inspire”