Happy Anniversary brain cancer

Okay, so the title seems a little silly, but today isn't just April Fools Day, it is also the 6th anniversary of my cancer diagnosis.

I've had symptoms for over a decade, and my first brain MRI on January 17, 2006 (8.25 years ago), where they found an area of increased signal in the periaqueductal gray matter of the Pons of the brainstem. My PCP called me at 8:46PM to tell me that I had a cyst, an infection, a tumor, or scar tissue from when I was assaulted by my grandfather 5 months earlier (the day before school started).

On April 1, 2008, I had my first appointment with Arnold G. Salotto MD, my neurosurgeon, who taught me how to read the MRIs and diagnosed me with DIPA (Diffuse Intrinsic Pontine Astrocytoma), a subset of DIPG (Diffuse Intrinsic Pontine Glioma). This is a childhood cancer that is typically fatal within 6-12 months of diagnosis (with treatment) and my tumor headaches started years before the first MRI and intensified 7-8 months before the first MRI (delayed diagnosis).

It is nothing short of a miracle that I'm still alive today, especially since I'm ineligible for or uncomfortable with conventional treatments, such as:
* IMRT - most precise form of external beam radiation using electrons (X-ray)
* radiation pellets (can't be safely placed)
* Proton therapy - external beam radiation using protons (better than X-ray & safer) -closest hospital is in Philadelphia (~200 miles away)
* chemotherapy (oncologist rejected)
* surgery (to dangerous, even a biopsy isn't safe)
* Novocure NovoTTF-100A (can't be used on brainstem)

Cannabinoids, and maybe melatonin, have teamed up with my immune system to significantly slow the growth of the tumor. I wouldn't be alive today without delta-9-tetrahydrocannabinol (THC), aka dronabinol/Marinol.

With pain destroying our lives, it's important to celebrate the good things, like a 6 year old 6-12 month prognosis.

My daughter turned six back in January and finishes kindergarten in June (and they're having her skip a grade) and I get to see it because of cannabis and my abnormally long survival time.

Steve M

OT-Novocure NovoTAL & my DIPA/DIPG

I was recently exited to learn that Novocure, the makers of the miraculous (IMO) NovoTTF-100A, recently released NovoTAL customizable arrays. I had originally been told that I couldn't utilize the Novocure system because of the location of my tumor (brainstem) and the arrays, but I want given any details. I had hoped that the new, customizable arrays could be used to work around the problem. Unfortunately, the arrays simply cannot be used to treat pontine gliomas due to the need to surround the tumor with arrays on all four sides (covering your ears and mouth a minimum of roughly 20 hours per day).

Long story short, I'm going to continue to live knowing that I'm doing nothing to treat my cancer, except for cannabinoids which appear to be only slowing the growth. Although they are significantly slowing the growth, they aren't stopping or reversing the growth.

Although the Novocure system is an amazing (effective and almost no side effects- mostly adhesive reactions) treatment option, it can't help me. The thought of the tumor continuing to grow and cause more pain is daunting and scary, but this system should help a lot of other people.

Steve