*An appeal to encourage Congress to investigate this follows Elena’s story*
Detroit area homeschooling mother of seven (wow!) Elena K. had four girls under the age of seven when she was diagnosed with stage II breast cancer in March of 2011. She seems to have been on chemotherapy, as her daughter said on her fundraising website:
She was nursing little Liberty when she had to stop because of her special medicine.
On November 10, Elena’s friends learned that her recent weakening condition is related to the cancer spreading to her liver. In late November 2011, her cancer is stage IV, and the family is looking into the Burzynski Clinic. Elena and her family went on television to appeal for funds to take her to the Clinic. The news did not focus on the clinic. It almost never does. At this time, the cancer is in her bones as well.
There is not a lot of information about this case, actually. On her daughter’s appeal site, savemymommy.com, the prognosis given to Elena by her doctors is less than six months. Their appeal on the website says:
My daddy loves my mommy and us a lot too. He says that there is a place down in Texas that helps people who are sick just like mommy. It’s called the Burzynski Clinic. They are very expensive. I was hoping that if we had enough money we could take our mom down there and maybe she could get well. We are taught not to ask for things from people, but we might not have enough money to be able to get her down there in time.
The week after the news segment, the family held a spaghetti dinner at their church. (There are so many spaghetti dinners…I wonder if the Clinic encourages this?) Her husband has the understanding that:
Dr. Burzynski’s therapy, until “Phase III” trials are complete, is considered “experimental” and does not qualify for medical insurance coverage.
This suggests to me that they believe that they are going down for antineoplastons. He’s had 35 years. Never completed a trial. Most pharmaceutical startups can bring their trial to market in a few years, and they don’t have the type of cash that bought Burzynski his gated mansion. The cost, according to her husband:
The FUNDRAISER is for Elena [K’s] Cancer Therapy at the Burzynski Clinic in Houston Tx. $30,000 to start and $4500 monthly thereafter for up to a year or more.
He then cites Eric Merola’s misleading hagiography to quackery, Burzynski.
December 6th, the family is on its way to Texas. Her church reports:
Pray for the [K] family as they are traveling to Texas for her treatments. Pray that the doctor will be able to do the treatments on her.
Elena [K] – having problems with the medicine she is taking for the cancer and in need of finding a doctor who will work with the clinic in Texas
This is not uncommon. Most doctors don’t want their name to be associated with Burzynski. That’s his reputation among his…betters. The problem is that once the families are trained in administering the medications, they return home to be treated. I wonder if they are in a trial, as that needs someone to monitor the patient when they are at home. They have been there for a month, which suggest that they are getting the standard ANP bag training.
Pray for Elena [K] who will be undergoing strong chemo treatments to help control her cancer.
Usually, ANP is not described as “chemo” (though it really, really is), but the other route that they seem to take at the Clinic is low-dose standard chemo in cocktail form. Who knows? In March 2012, a fundraiser is being held for Elena by a local photo studio.
In August 2012, Elena is looking to raise money for the next round of cancer treatments, some $20,000 this time. I don’t know which treatment she is raising money for.
We find out that she has been in the hospital in her last days. She came home from on November 13th and died on November 15th.
Her friend, Luanna, lamented:
Those of you who knew my good friend Elena [K] and her struggle with breast cancer, it ended Thursday at 4:40p she went home to be with Jesus. Her family and friends around her bed at home. I had been with her since she came home on Tuesday from the hospital helping to care for her. I loved her like my own sister I will miss our late night talks the most. I stayed in bed all day Friday but today it was time to face the world with out her. Thanks to all of you who came to the fund raiser in support of her and all the prayers you sent her way.
Our deepest sympathies go out to Elena’s family.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.