“Top 10 things a caregiver needs to do for newly diagnosed GBM patient”

This is a recent post from the ABTA Inspire website that is so instructive and practical and understanding that I just had to repost the essence. Here’s the “top ten”. Please follow the link for details.

1. “realize that it is going to be hard - physically, emotionally on YOU, not just the patient
2. create contingency plans as soon as possible
3. understand your insurance benefits
4. determine what facilities you will use, if you have to - make decisions before you are in a crisis - what hospitals, rehab facilities, skilled nursing facilities, and funeral homes will you use if needed
5. get educated on how to make your home accessible for a disabled person and the related costs
6. get educated on financial and other help that is available
7. it is hard to manage all of the insurance paperwork & medical bill
8. accept the help that other can offer
9. understand your patients wishes for care while alive and for the funeral, etc
10. each out for help”

http://www.inspire.com/groups/american-brain-tumor-association/discussion/top-10-things-a-caregiver-needs-to-do-for-newly-diagnosed-gbm-patient/?ref=as&asat=141356328

Image credit: <a href='http://www.123rf.com/photo_12858145_word-top-10--written-by-a-chalk-on-a-blackboard.html'>timbrk / 123RF Stock Photo</a>

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 http://www.inspire.com/static/inspire/reports/inspire-stanford-experts-by-experience-report.pdf  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”

The Curcumin Controversy

Want to see cancer doctors, patients, caregivers and other assorted stakeholders get all hot and bothered?  Ask them about the curcumin and cancer.

According to the American Cancer Society’s website, “Turmeric is a common food flavoring and coloring in Asian cooking. Animal and laboratory studies have found that curcumin, an antioxidant that is an active ingredient in turmeric, demonstrated some anticancer effects. However, clinical research is needed to determine curcumin's role in cancer prevention and treatment in humans. Several types of cancer cells are inhibited by curcumin in the laboratory, and curcumin slows the spread of some cancers in some animal studies.”

As you can image, there are now studies galore with results and opinions vigorously pro and con. The pro side is convinced that this works. The con side needs more evidence and thinks that the “pro” side is not demanding the rigorous studies needed before clutching to a possible solution.

The Inspire online conversation is a great example of this discussion - http://www.inspire.com/RachelIdon/journal/curcumin-against-cancer/?reply_sort=asc&page=2#replies - and has been, in turns, thoughtful, concerned, upbeat and pessimistic. If nothing else, it’s passionate. I see 100 replies to Rachelldon’s original www.1uponcancer.com posting entitled “Curcumin has cancer fighting properties” - http://www.1uponcancer.com/2012/12/22/curcumin-has-cancer-fighting-properties/

The lead sentence in the article reports that “Curcumin, in the Indian spice, turmeric, is proving to help  suppress or prevent cancers; specifically cancer of the breast, prostate, esophagus, mouth, intestines, stomach, and skin as well as leukemia.“

The article goes on to say that the “UCLA Johnson Comprehensive Cancer Center found promising news with head and neck cancer. Curcumin suppressed the disease in human cells and mice when applied as a paste. In a follow-up 2010 study, head and neck cancer patients took 1,000-mg tablets for a short time period. The result was reduction in pro-inflammatory cytokines (proteins) that feed cancer. And inhibition of the cell-signaling pathway driving tumor growth.”

So what do I think of all of this? I guess I want to believe that curcumin helps, that curcumin helps fight cancer. At the same time, I often reflect back on Barbara Strauch’s comments from her insightful book entitled The Secret Life of the Grown-Up Brain in which she noted that, “For years, scientists believed diet had little impact on our brains because they thought most nutrients didn’t cross the blood-brain barrier.” The blood-brain-barrier is real. Cells linking blood vessels in the brain are packed close together to keep out certain large molecules and maintain a chemical balance.

So for now I remain confused, hopeful and thinking that Indian food for lunch, with lots of turmeric, would taste just fine.

Image credit: <a href='http://www.123rf.com/photo_12707543_turmeric-powder-spice-pile-with-garlic-and-spoon.html'>foryouinf / 123RF Stock Photo</a>