I have a Bachelor’s degree in biology from Houghton College (magna cum laude), and a Master’s and PhD in biology from SUNY-ESF. I taught college biology for nearly five years. My training is in mycology and microbiology.
For a brief time, I served as a grant proposal and medical writer providing continuing medical education activities (CME) for National Jewish Health, the premier research hospital in the United States for respiratory and immune disorders.
Those are my professional qualifications. What about personal ones? Unfortunately, I know a lot about cancer first-hand.
When I was 5 years old, my mother came down with Stage III Hodgkin’s lymphoma. She went on to develop additional lymphomas with brain metastases over the course of the next four years. She was treated with chemotherapy, 55 whole body radiation treatments, and Gamma Knife therapy to the brain.
Miraculously, she survived to live another 30 years. But she died suddenly of a stroke at the age of 54. Stroke is one of the increased risks of having radiation treatment to the brain.
My father was diagnosed with lymphoma when I was a teenager. At that time, my mother worked night shifts, and I was home alone to care for my dad.
There weren’t as many medications available in 1990 to deal with the nausea from chemotherapy. When he would come home from chemotherapy treatments, there was a brief window of time before he would become violently ill. I remember sitting by his bedside, waiting for him to turn nearly green, and then holding a bucket for him to vomit, wiping his face with a washcloth when it was over.
My great-grandfather died of brain cancer when I was sixteen. It was most likely glioblastoma, the most aggressive form of brain cancer. In his 80s, he started having some headaches. One day he handed the TV remote to my grandmother and said, "I don't know how to work this!"
The next day he started walking funny. He was shortly admitted to a nursing home, and he was gone in under a month.
Medical science has made amazing progress in treating many lymphomas and prostate cancer. My grandfather was diagnosed with both of these cancer in the past decade, successfully treated with conventional radio- and immunotherapy, and is still with us at 84 years of age.
Unfortunately, the most devastating cancer experience of my life was yet to come.
Robb had been experiencing seizures for a month, and in the past ten days he'd had a rapid worsening of slurred speech. Glioblastoma. The same cancer that snatched my great-grandfather away in under a month.
I knew what this meant. I turned my head away from my husband and hid my face from him when we got the diagnosis, so he wouldn’t see my agony.
The surgeon said that my husband would live for two months, maximum, without having surgery to remove the tumor. The tumor was in his speech centers, so she could not guarantee a successful surgery that would not knock out his ability to speak.
She told us the cancer was uniformly terminal (fatal), and that he would not live more than 12-18 months with surgery followed by conventional treatment with radiation and chemotherapy. I got the distinct impression she did not think he had even that long.
We drove home in shock and silence. My husband went to his computer and attempted to compose documents in order to put his affairs in order.
He asked me three times how to spell the word “just.” Then he cried.
I went upstairs, crawled into bed, and sobbed for hours with warm sunshine pouring over me, as I pulled the covers over my head. On that cruel, merciless day, there were no clouds to be seen.
The neurosurgeon’s options for Robb had been to:
The latter option could possibly give us a chance for clinical trials afterward.
She told us to go home and watch a movie, and to try not to think about it that evening. It felt as if she thought Robb was a hopeless case. I got the distinct impression that she didn’t think it was worth it for Robb to even do the surgery.
She seemed like a fatalist. I was angry. It was a punch in the gut.
I knew all about this cancer already, but everything inside me was screaming, “I will find a way out of this nightmare. My husband cannot die.”
I had a PhD in biology. I decided to dig into PubMed that very evening to see what I could find about treatment options for this cancer.
Over the course of several days, I learned why the neurosurgeon was gently steering Robb away from therapy. When neurosurgeons have the misfortune of being diagnosed with this cancer themselves, they often get the first surgery to give them enough time to get their affairs in order.
But they often will not do any conventional treatment.
They have seen the results, and it is too debilitating. They do not wish to subject themselves to it. The surgeon was legally obligated to tell us what his treatment options were, but her unspoken beliefs were vaguely clear:
My husband had a background in everything. He was a brilliant inventor, an electrical engineer, a self-taught piano player, and took an interest in every conceivable subject: art, science, and architecture.
He was the general contractor on the home he built for himself. He was a kind, funny, larger than life presence who would not take no for an answer.
And he had no respect for the status quo. So he pushed and pushed and pushed me to find an answer.
I have always been a voracious reader. And because of my PhD in biology, I had served as a grant proposal and medical writer providing continuing medical education activities (CME) for a local research hospital specializing in immune disorders.
Over the course of the next three weeks, I read hundreds of scientific abstracts. I consulted with trusted scientists and physicians.
We consulted with the best regional brain tumor specialist in Denver who believed in an aggressive treatment protocol of radiation with six different chemotherapy drugs. My husband had never been on a single drug in his life. Radiation to the brain can alone be exhausting, with patients sleeping up to 15 hours per day.
I knew that this aggressive treatment would destroy him. As I read more, we became more convinced that conventional treatment was not the way to go for this particular cancer.
Robb wanted to be totally cured or to go out with a bang — literally. There was to be no “middle ground” of slowly losing his faculties and abilities while becoming dependent on others.
We had no kids. He told me that without me and our dog, he would have put a bullet in his brain. I believed him.
It took all of my effort to muster our friends and family to encourage my beleaguered husband to have the first surgery. I told him: this gives us more time.
He came through the surgery successfully, making the hospital staff laugh as he jogged around the hallways a couple of days after the procedure. We became convinced that the answer to this cancer was immunotherapy. There were vaccines being developed in clinical trials that were giving some patients 8-10 years.
in order to enter such a trial, he had to meet basic functionality, age, and other requirements. Once he met those hurdles, he would have to have the luck of being chosen for the treatment arm of such a trial. I knew from my literature research that there was a 25% chance his functionality would decline and the tumor would actually grow, even through conventional therapy.
And this tumor, according to the radiologist's report was "unusually aggressive." Only swelling was visible in late November 2013 when he'd begun to have seizures. A little over a month later, a 2.5 cm. tumor was present. Only two weeks later, it was already 3.8 cm. in diameter.
Robb refused to become a typical victim of this disease. My sister set up a fundraising website to collect donations. I continued my literature research.
I discovered a cancer clinic in Mexico that was using the first cancer vaccine (Coley vaccine) developed at Sloan-Kettering in the early 1900s, and I made connections in its biochemical similarities to the current clinical trials and experimental approaches.
Exactly three weeks to the day after Robb’s brain surgery, we flew out of Denver to San Diego. I called the neurosurgeon’s office to cancel our appointment to get the stitches removed from Robb’s head: there wasn't any time to waste.
With some trepidation, I told the secretary, and then the neurosurgeon, what we were doing. She went silent, and then said,
What followed was, in many respects, the best year of my life. Beyond our wildest dreams, the treatment worked. My husband continued working on his engineering and invention projects, and fairly rapidly regained all of his lost language function, although his speech remained slurred.
There was no baseline for how often the vaccine boosters should be done. We started with 3 injections per week, continuing to May 20.
After those first three months, he took roughly a month off of therapy, doing vaccine injections only about once every ten days from May 20 to June 25.
Three new tumors had popped up in that short period of time, each approximately 1 cm. in diameter (top left).
He instantly went back into therapy in Mexico during the first week in July, and stopped the growth of the tumors for two months. Then, in September, after receiving the good MRI report in the bottom right of the above photo, we decreased the injection frequency from 3x per week to 2x per week in order to give him some relief from the fever symptoms.
October's MRI showed that the three tumors had grown wildly out of control, requiring another surgery scheduled for October 30, 2014, roughly one week later.
On the day before my husband’s second brain surgery, he cut down 7 trees in our backyard.
A few days before that, as we had sat in the neurosurgeon’s office, the secretary had told us, “This is the best GBM outcome I’ve seen in my 15 years here.”
The neurosurgeon told me that our buck the system approach had profoundly changed her perspective.
And the second neurosurgeon said, “I can’t believe that guy is still alive.”
After his surgery, we couldn’t control the swelling in his brain, despite massive doses of steroid. Robb died in under 3 weeks on November 18, 2014.
But he had lived nearly a year after he had his first seizure, with a great quality of life.
Like many pioneers venturing into unknown territory, he couldn’t make it all the way back home himself.
I don’t regret the decisions we made, and I’d do it all over again tomorrow. And I’ve realized something profound. My husband gave me a gift.
An incredible gift.
Even though we ultimately failed to save his life, I no longer view terminal cancer as the same intractable and deadly menace that I thought it was, despite the fact that it has claimed so many people I’ve loved.
Anyone who cares to know about the kinks in cancer's armor, and about powerful new options for treatment, can do so. The power available to us today, through the internet, was not present in the 1980s and 1990s when my parents had cancer.
And knowledge, as well as a huge dose of recalcitrance, gave my husband a wonderful last year of life.
I’m not here to tell you that going to a foreign immunotherapy clinic, or changing your diet, or taking lots of supplements will cure your cancer. However, it could help.
My goal is to provide you with scientific information about popular alternative therapies and what I have come to believe is the best hope for cancer remission: your immune system.
Some alternative therapies are junk, and some are not. I was involuntarily forced to sort the wheat from the chaff. So many people have told me:
I hope that many of you will be helped by what I learned. I hope that your life can be improved or saved.
And I know without a doubt that Robb would support the effort.
Monica Hughes, PhD