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

This says it all...

Although this is specifically about preventative care, ALL EFFECTIVE TREATMENTS HURT RETURN BUSINESS, especially pain care (thank for profit medicine for a lack of effective treatments, especially opioids). Why stabilize a patient when return business would be threatened?

 Yes, this is cynical and not every doctor is this heartless, but many are (consciously or subconsciously).

My PCP is one of those who has a heart. He could make a lot more with useless antidepressants, anti-epileptics, and antipsychotics (I've tried dozens already) and the countless follow up appointments that dose changes and new medications require. He could make even more with injections. As a PCP, he can't do procedures, but he could send me to yet another useless (useless for me) interventional pain management consultation (which his medical group now has in house) and REALLY milk my insurance. Unfortunately, many doctors don't care about their patients' wellbeing as much as mine does. Not only do opioids and other safer treatments (pretty much anything except surgery and procedures; generally, the higher the cost, the greater the risk) less costly, but prescriptions for controlled substances (opioids, Lyrica, benzodiazepines, etcetera) are significantly more work for the doctor and carry additional risk for them because of the overzealous DEA. 

If you're lucky enough to have a doctor willing to prescribe opioids when necessary, THANK THEM & appreciate  them because they are rare.

Think about your doctor's motives.

Healthcare is NOT a free market, we don't choose to get sick, we don't even choose our treatments, our doctors do. Methadone is the most cost effective pain treatment, but most most doctors refuse to even consider prescribing it (even when you beg).