‘Dr. Burzynski’s hope, optimism dwarf stature of those who tear down his work’

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To the Editor:
With Eugene “Neil” Fachon’s passing on February 19, 2017, critics of Dr. Burzynski may be anxious to see if they’ve acquired new allies in their endless quest to discredit his work. Are we amongst those whose dashed hopes fester into anti-Burzynski vitriol? The answer is, “No.” Please let us explain:
When we first learned on March 3 of last year about Neil’s horrible illness, Diffuse Intrinsic Pontine Glioma (DIPG) and the experts at Mass General and Dana Farber told us his prognosis: three months to live without any treatment, six months if one of their proffered options were taken. We knew we were up against the worst nightmare of our lives. We always prayed for a miracle cure, but from the start we realized there might be no silver lining. All we knew for sure at the time was there were lots more questions than answers. Amongst them, was adding a few months to Neil’s life the best he could hope for?
Armed with little more than determination, we began researching every treatment option we could find, from taking standard radiation or performing a biopsy to typematch the tumor to drugs that might have effect, to clinical trials using immunotherapy or trying “convection-enhanced” chemo-therapy which bypasses the blood/brain barrier to deliver chemo directly into the tumor. In addition, there was a clinical trial being conducted by the Burzynski Clinic using “Antineoplaston [ANP]” therapy. ANP therapy was invented and pioneered by Dr. Stanislaw Burzynski in the 1980s, but it is still considered experimental by the FDA.
Of the methods researched, the immunotherapy trials looked promising but were just in their infancy. Convection-enhanced chemo-delivery seemed logical, but no drug has yet proven particularly effective against DIPG. Each of these trials also required their patients take a course of standard radiation to “stabilize” the tumor prior to being given any experimental treatment. Neil was flatly opposed to radiation. To him, treating one cancer by a means which significantly increased the risk of getting another cancer was anathema. The only treatment with significantly better outcomes than “standard” care – even so these results were “anecdotal” – was the ANP therapy being offered in the Burzynski Clinic trial. And no radiation was required. We located a DIPG survivor who had been treated by Dr. Burzynski, and Neil spoke with her personally. This simple conversation cut through much of the negative commentary that hounds Dr. Burzynski on the Internet.
When Neil began the clinical trial at the Burzynski Clinic in April of 2016, he was brimming with positive energy and optimism, important “ingredients” when treating any disease. Sadly, his optimism suffered a severe blow when the FDA attempted to halt his trial retroactively. His story made national news when he fought in court for his right to maintain treatment. His lawyer, Kathleen Hagerty, won the battle, but it came with a steep cost to the momentum of Neil’s treatment as well as heaping unimaginable stress on a young man already engaged in the Fight of his life. The role stress plays in cancer is well documented. Nonetheless, Neil soldiered on with good humor, full of Love for Life, Family, Friends and our shared World.
We kept detailed records throughout Neil’s course of treatment. His MRI’s were also reviewed by an independent radiologist: We were told Neil’s tumor increased in size through May of 2016. Thereafter, it remained relatively “stable,” well past the date when he was predicted to die if he had taken “standard” care. Before Neil was hospitalized in late November for hydrocephalus, his tumor may actually have begun to shrink, but we’ve learned there is a great deal of “art” to reading MRIs, so we cannot say for sure if any shrinkage occurred. What is clear is Neil outlived his prognosis by several months, and for all but two of these months he had a good quality of life. By this measure alone, he had a positive, objective clinical response to ANP therapy. While on treatment, Neil also reported feeling a “waterfall” in the back of his head. Something was happening. When Neil was refused access to ANP treatment during his hospital stays, he would sometimes point to the back of his head and shrug with his eyes, as if to say, “We’re losing time.”
So rather than holding any grudge against Dr. Burzynski, we find ourselves wondering what might have happened had ANPs been fully embraced and developed by mainstream medicine years ago. By now they would be on their 4th or 5th generation of development. How much more effective might they be we can only imagine. And due to mainstream medicine’s prolonged rebuff of Dr. Burzynski, he has been deprived of a network of actively involved colleagues who can administer ANPs and oversee patient care. For us, in the last months of Neil’s life, this could have made a big difference. No, we do not fault the doctors who stepped up to help us, but where ANPs are concerned, our lay-expertise exceeded theirs - not optimum. Sadly, mainstream doctors in general held Neil at arms length, happily treating secondary issues, but trying mightily to avoid any appearance of condoning, let alone endorsing Dr. Burzynski or his treatment of Neil’s DIPG. This left us flying by the seat of our pants for much of the time. The Burzynski Clinic was ever on standby to offer recommendations, but not having an actively interested and knowledgeable expert on hand was costly.
Lastly, speaking directly to Dr. Burzynski’s critics who call him a scam artist and claim he lures people in with false hope and then takes their money, try paying for standard chemo or radiation out of pocket. It’s very expensive. Dr. Burzynski does not have the benefit of being covered by insurance. As for failing to cure all his patients, show us the oncologist who has. Dr. Burzynski offers hope, but no guaranties. He often works with patients who have been given up as lost causes. Our son was basically one of those. No, Neil ultimately did not survive, but he did much better than any mainstream expert said he could. To us and to him, that meant a lot. He lived with real hope (What is hope if not standing steadfast against daunting odds?) and he had a chance to convey heartfelt farewells to his family and friends.
Trying to be as objective as we can in the wake of our loss, credit should be given where credit is due. Instead of vilifying Dr. Burzynski because he is unorthodox, we wish to thank him and his Clinic from the bottom of our hearts for the extra time Neil had to live. Dr. Burzynski’s hope and optimism dwarf the stature of those who want nothing more than to tear down his work. That he remains indomitably optimistic after so many years of abuse is mute testament to his character. He buoyed us when others preached hospice. In a more perfect world, Neil might still be alive and demonstrably beating his cancer. That is the world we hope Neil’s legacy will help build.

Dean & Wendy Fachon
East Greenwich


Editor’s note: According to the Dana Farber website: “Diffuse Intrinsic Pontine Glioma (DIPG) Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, meaning they arise from the brain’s glial tissue, tissue made up of cells that help support and protect the brain’s neurons.”

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Billpaola

As a parent that has walked in the DPIG world I wish Peace to you and family. It is and always will be a sucky situation for anyone and their family to be faced with.

Our daughter Rachael passed at the age of 16 back in November 28, 2002. She was diagnosed two years earlier November 7, 2000. At that time therapy options were IMRT radiation which RI Hospital Radiology were the only ones regionally that had that capability and chemo. And as you noted there is no chemo, even today, that will work on that cancer (glioblastoma) as it is one of the most aggressive cancers anyone could face. And medical options and therapy choices haven't changed much in 30 years.

We also consulted personally with Dr Burzynski and 6 other major pediatric brain tumor clinics in trying to find the right approach to a known ending .. no matter what choice ... Hope was the best one you're left with. Hoping something new come along or a good response to the therapy chosen ... while you wait in hope.

I won't go into what choices we made with Rachael because we learned from others in the same situation, there is no wrong choice or path. In the end we live without our kid ... and all that matters after is you have to believe they knew you we were doing everything and it makes no difference what others think. They aren't you.

Friday, April 14