“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

 

Brain Cancer, Melanoma & U.S. President Jimmy Carter

I found this article by Kathleen Foody in Friday’s Chicago Tribune disturbing on a number of levels - http://www.chicagotribune.com/news/nationworld/ct-jimmy-carter-brain-cancer-20150820-story.html

 

The disturbing part is easy, ex-US President Jimmy Carter reported in a news conference late last week that “…doctors had removed melanoma from his liver, but found four small tumors in his brain. Later Thursday, he received radiation treatment. He also began receiving injections of a newly approved drug to help his immune system seek out and destroy the cancer cells wherever else they may appear.”

Bleakly, the cancer color for melanoma is black which, to my way of thinking, tells you all you need to know.

In fact, everything I know about melanoma, the most serious type of skin cancer, is bad. I know that melanoma has killed a cousin of mine, and that it has tried to kill both me and another cousin. We’re the lucky ones because unless it’s caught early, melanoma can all too easily become a quick one-way trip to the grave.

An article I read on Medscape.com reported that, “The incidence of melanoma is on the rise and although melanoma currently accounts for only 4% of all skin cancers, it is responsible for 80% of all skin cancer deaths. Worldwide, the incidence of melanoma is roughly 200,000, leading to approximately 46,000 deaths. Compared with primary lung, breast, renal or colorectal cancer, melanoma has the highest propensity to metastasize to the brain: over one-third of patients with metastatic melanoma will eventually develop a clinically apparent brain metastasis.” Here’s a link to the article: http://www.medscape.com/viewarticle/813109

According to the article, “His treatment regimen will include four injections of pembrolizumab, which was approved by the FDA for melanoma patients last year, at three-week intervals.”

If you, like me, couldn’t spell "pembrolizumab," let alone know what it is or does, here’s a link to a very recent article from The New England Journal of Medicine  which seems to indicate that the drug pembrolizumab is the current best weapon we have for fighting melanoma, wherever it is in the body: http://www.nejm.org/doi/full/10.1056/NEJMoa1503093

 

John

PS - I added the italic to the Medscape quote to emphasize the deadliness of the disease.

MRS = Mucho Relief, Sigh

Last week I was still waiting for an official assessment of my MRS (i.e. MRI – Spectroscopy) test from my neurosurgeon. Was I a “patient” patient?  

No.

Ironically I spent most of last week preparing to co-teach a class on “Early Response Teams” that I trained for while attending the Disaster Academy earlier in the year. (Early Response Teams are the “second wave” that enters a disaster area following first responders after a natural disaster like a hurricane, tornado or flood.)

In a lot of ways, last week could have been a personal disaster.

A very real scenario was: 1) doing a sub-par job in co-teaching the class, 2) being denied certification as an Early Response Team teacher and 3) learning that I my tumor, which I have named “The Blob”, was starting to grow again.

At 7:00 pm the night before my presentation, I got an email saying that my neurosurgeon thought that The Blob was still in remission even though it seems to have grown some due to swelling from the radiation.

Whew.

I went on to teach my class and take the next step in ERT certification.

For some reason, the “up” of having a good MRI is never more than relief at having dodged a bullet again.  I now have another three months to make whoopee before my next MRI.

I can’t wait for the day that I my brain tumor check-ups are once every twelve months…like my melanoma check-ups.