“Are you a patient or caregiver? We need your help!”

I got this request from a healtheo360  email:

“Are you a patient or caregiver?  We need your help!

We have partnered with a team of medical artists and designers who are currently developing patient and caregiver educational materials.

We are looking to receive feedback on the draft materials that we have developed.  With your feedback, we will be able to update and improve the materials so that they better meet the needs of patients and caregivers, just like you.

We need your help and expertise to make these educational materials better, so we created two simple questionnaires to gather your feedback for patients living with lung cancer or melanoma and their caregivers.

The questionnaires will take about 10 minutes to complete.  All responses will be kept confidential.”

If you are interested, here’s the link: https://www.surveymonkey.com/r/9JSRRWH

If you want to know more about healtheo360, here’s a link to their website: http://www.healtheo360.com/

John

PS – And here’s a blog a wrote about healtheo360 previously: http://johnstumor.blogspot.com/2013/05/healtheo360com-brain-cancer-stories.html

 

I love this idea!  I call it “Patient-to-Patient” therapy. Here’s the American Brain tumor Association’s description of this new-to-me initiative:

“In an effort to provide compassion, support and guidance to ease the brain tumor journey, the American Brain Tumor Association CommYOUnity™ Connect program pairs newly-diagnosed brain tumor patients and caregivers with “Mentors” who have been through a similar diagnosis. Often the best "medicine" is talking with someone who has walked in your shoes.”

How great is that? Now brain tumor patients can talk to somebody who knows what it feels like to have been told the shocking news that they have a brain tumor.

This early moment, when the unreality and horror and gravity of the brain tumor diagnosis hits you upside the head like a sledge hammer, the ABTA is taking the special step of finding a way to connect you with somebody who has heard the same horrifying news and had the snot scared out of them.

Importantly the website posting notes that “nce you have submitted your profile you will be redirected to a webpage to schedule a brief conversation with an ABTA Specialist.” The posting concludes saying that “We look forward to speaking with you soon.”

Unfortunately, the ATBA goes on to write that “Please note: The American Brain Tumor Association is currently only matching ABTA CommYOUnity™ Connect members in the United States. Please feel free to still complete the profile and we will keep the information in our secure database for potential future endeavors.”

Here’s the link: https://www.tfaforms.com/361615

Potential Promising New GBM Therapy

Here’s the headline that caught my eye “UCLA scientists develop promising new combination treatment for glioblastoma.” - http://www.news-medical.net/news/20150902/UCLA-scientists-develop-promising-new-combination-treatment-for-glioblastoma.aspx

The first sentence of the posting hedges that statement but also holds out some promise saying “UCLA scientists have developed a potentially promising new combination therapy for glioblastoma, the deadliest form of brain cancer.”

If you’re new to the brain tumor business, the first two sentences succinctly and bluntly spells out the dark truth about GBM: “Glioblastoma, also known as grade IV glioma, is the most aggressive primary brain tumor in humans. Approximately 23,000 people in the U.S. are diagnosed with glioblastoma (GBM) every year. Patients usually receive surgery, chemotherapy and radiation, but these treatments are not very effective as an estimated 50 percent of GBM patients die within one year, and 90 percent die within three years”

Several facts whacked me in the eyeballs as I read that paragraph: “23,000 people in the U.S.”, “…but these treatments are not very effective…” and “…an estimated 50% die within one year…”

I don’t know what else to say. GBM is ruthless, relentless and black-heartedly deadly. So when somebody, anybody, says there is any kind of hope for victims, I pay attention.

The article discusses a study led by UCLA's Drs. Robert Prins and Linda Liau, both UCLA Jonsson Comprehensive Cancer Center members, that looked at the impact of a combined treatment using a chemotherapy drug called decitabine and genetically modified immune cells or T cell immunotherapy.  

The article reports that “this new method was nearly 50 percent effective at curing glioblastoma in the study.”

I so want to believe that this new protocol/therapy can be rolled out quickly to every GBM victim worldwide.

Read the entire article to better understand how the therapy works and what the next step is: http://www.news-medical.net/news/20150902/UCLA-scientists-develop-promising-new-combination-treatment-for-glioblastoma.aspx

  

Survival Rates Cancer Type

When some average mope at a party learns that I blog about brain tumors, I get questions, a lot of particularly morbid questions like:

• “How bad is brain cancer compared to other cancers?”
• “How long does ______(our friend)  have to live?”
• “What’s the worst cancer to have?”

I rarely know how to answer these questions because it’s hard to think of a brain tumor or cancer that isn’t bad and I know almost nothing about the victim's situation.

I just found the Cancer Research UK website, though, which is helpful in providing information on how to compare the different cancers.  The average survival rates give everybody – victims, caregivers, friends & family – have some vague idea of what to expect (although, as with most everything in life, your survival rate may differ).

If you go to this website, poke around a bit, there’s a lot of good information.

Here’s a link: http://www.cancerresearchuk.org/health-professional/cancer-statistics/survival/common-cancers-compared#heading-Zero

John

PS - I find this whole business of comparing cancers and deciding whose friend/relative/significant other has the worse cancer to be particularly idiotic.  Here’s my excerpt from my book, “Chief Complaint, Brain Tumor” - http://www.chief-complaint.com/ - about such inane conversations:

“The phrase “brain tumor” is scary and difficult to slide into any casual,

over-the-fence-with-the-neighbor conversation. I imagined the following

conversation when running into a friend at Starbuck’s:

“Hey Fred, how’s it going?”

“Great! Our daughter Mary just made the high school jazz band as the

bass player, the only student to ever be picked as a sophomore.”

“Congratulations!”

“And you, how’s it going?”

“Well, I’ve just been diagnosed with a brain tumor—the tumor’s as big

as your wife’s fist.”

“No shit. Well…how about them Bears?”

And with your more competitive acquaintances, I could imagine the

following conversation with Ashton:

“John, how are you? It’s good to see you.”

“I’ve just been diagnosed as having a brain tumor.”

“Really, what kind?”

“It’s a Grade I meningioma. It’s about as big as your fist.”

“Well, my brother Dave has a Grade III metastatic brain tumor. It’s a

Gliomas type of brain tumor. We’re very worried about it infiltrating adjacent

brain tissue. You should be grateful that you only have a Grade I meningioma!”