Wednesday, July 1, 2015
Now here’s news that makes me cringe and somewhat hopeful at the same time.
The headline from an article by Sue Hughes posted on Medscape.com - http://www.medscape.com/viewarticle/847217 - reports that “New Technology May Better Distinguish Brain Tumors From Healthy Tissue.”
The article goes on to report that “"This new technology can distinguish what is cancer and what is normal brain tissue better than anything else we have. We are finally cracking the code," according to lead investigator Alfredo Quinones-Hinojosa, MD, professor of neurosurgery, neuroscience and oncology at the Johns Hopkins University School of Medicine, Baltimore, Maryland.”
While I’m happy that we’re improving our ability to do just that, part of me just cringes when thinking of my brain tumor operation. I mean, was my excellent surgeon just making her best educated guess on what to snip out of my brain?
This next sentence didn’t put my mind at ease: "As a neurosurgeon, I'm in agony when I'm taking out a tumor. If I take out too little, the cancer could come back; too much, and the patient can be permanently disabled. We think optical coherence tomography has strong potential for helping surgeons know exactly where to cut."
Yikes! Maybe she did (just) make her best, albeit expert, guess. Haven’t surgeons been able to detect/identify/spot those nasty brain tumors accurately?
"It is not like in other areas on the body where extra tissue can be taken to be on the safe side. You can't do this in the brain. We obviously do not want to remove healthy brain cells, as this could compromise speech, motor and cognitive function. So we end up leaving parts of the tumor in. With OCT we can be much more accurate."
Argghh! This article makes me suspect that our “state of the art” technology to date is going to look awfully dated in a couple of years, if not look like the dark ages.
Here’s a link to the article: http://www.medscape.com/viewarticle/847217
For you brainiacs, amateur scientists or just those thirsting for more information, here’s a link to the study abstract published in Science Translational Medicine: http://stm.sciencemag.org/content/7/292/292ra100.abstract
Monday, June 22, 2015
Last night CBS reran their expose of the high cost of cancer drugs in the U.S. which was narrated by Leslie Stahl - http://www.cbsnews.com/news/the-cost-of-cancer-drugs/
I was appalled the first time I watched this and doubly appalled the second time I saw it. Here’s what I remember from watching it:
- The cost of cancer drugs is ridiculously high – no matter where you live.
- Cancer patients in the U.S. pay significantly more for the same exact drug – e.g. Avastin – than cancer victims in other countries.
- By law, drug companies in the U.S. get to charge anything they want for these drugs.
- Dying cancer patients often go broke/bankrupt trying to pay for these exorbitantly expensive drugs.
- The drugs don’t work miracles (like actually cure something) and often just extend lives by weeks or months.
- New cancer drugs rarely offer any important advances in effectiveness or patient benefits.
- Cancer doctors get kick-backs for prescribing the newest, more expensive cancer drugs.
- The only good news is that the good folks at Memorial Sloan Kettering, one of the nation's premier cancer centers, led by Dr. Leonard Saltz is chief of gastrointestinal oncology , have a moral backbone and decided to stop prescribing the newest, prohibitively expensive and not particularly more effective cancer drug.
- They not only decided to stop prescribing it, they wrote a New York Times OP-ED article stating why they decided to do so.
Shockingly, “Right after their editorial was published, the drug's manufacturer, Sanofi, cut the price of Zaltrap by more than half” said Dr. Peter Bach Sloan’s in-house expert on drug costs.
I recommend that you watch this and, if you live in the U.S., write your congressman. If you don’t live in the U.S. write your relevant governmental agency and thank them profusely.
Thursday, June 11, 2015
I have great respect for caregivers of all shapes and sizes. My wonderful sister was my caregiver when I came home from my first brain tumor operation. She was patient, attentive and gentle.
She did all that in spite of the fact that I was a mess: I had trouble walking, my short-term memory was reduced to about a nanosecond and nobody in their right mind would let me near a stove. Said differently, she was an angel and I was incredibly lucky.
In a month or so, though, I became nearly self-sufficient – so much so that my wife could leave me at home alone with huge worries.
Not all brain tumor victim caregivers are so lucky.
If you or your caregiver is not so lucky, I think you’ll find the American Brain Tumor Association’s “Caregiver Resource Center” section particularly useful: http://www.abta.org/brain-tumor-treatment/caregivers/
It’s got information on:
- The Impact on the Family Unit
- Helping the Children and Teens Cope
- The Role of the Caregiver
- Managing Physical Symptoms
- Managing Cognitive Symptoms
- Caring for the Caregiver
- Getting the Help You Need
- Safety at Home
- Tips for Extended Family and Friends
- Navigating the Health (USA) System
- Caregiver Terms and Worksheets
And, just as importantly, it’s got caregiver videos: http://www.abta.org/brain-tumor-treatment/caregivers/caregiver-videos.html The videos are honest, raw and informative. Please don’t underestimate the importance of these videos. Just like brain tumor support groups for patients, I find that connecting caregivers with other caregivers, somebody to talks to who really understands your problems, provides a world of good.
Thursday, June 4, 2015
Here’s a link to a nice article by a group of writers about the “importance of resilience” – how some children bounce back from adversity better than others: http://content.time.com/time/magazine/article/0,9171,1015897-1,00.html
As you may guess, I see this as not only child development learning, but also instructive for brain tumor victims.
As I talk to brain tumor victims and stroke groups, I find some people determined to maximize their “new normal” and others in the midst of giving up and shutting down no matter how much support or love or attention they receive.
Most of the article is written with child development in mind, but I love the idea of helping brain tumor victims improve their resilience, build their resilience and fortify their resilience.
I hope it similarly inspires you.