Burzynski Patient Janet E.’s Story

In April 2010, Janet E. was diagnosed with ovarian cancer. The cancer was treated with conventional therapies, including surgery and chemotherapy, and by March 2011, she was in remission. Unfortunately, in November 2011, she relapsed. As she put it in a blog post:
“[…]I flunked my 6 month check up on Nov 8. My CA 125 was up to 624!! Normal is under 21 and it has been about 5 since March 2011 . It came as a complete shock as I feel absolutely fine. It is only the doctor who tells me I am sick. I did have a CT scan and the radiologist saw some very small “nodularity contiguous with the surface of the liver compatible with metastatic disease”.
This was, coincidentally, the same time that Burzynski’s people were sending bogus legal threats to teenagers and former patients, and the story exploded across the Internet while they were there, and her partner and longtime travelling companion Dave jumped into the online discussion, passionately defending Burzynski. In one comment, he discusses Janet’s prognosis:

The Medical Establishment “success(??)” numbers for my wife’s, now recurrent cancer, is half of them dead in 12 months. Two different Top Docs in the local Medical Establishment claim that her best hope is that they can give her 3.5 to 5.5 yrs of chemo and then she will be dead. And that ties her to Seattle. Forget the travel that we had been doing and planned to continue.

But, Dr. Burzynski says that only 15% his ovarian cancer patients get worse. 62% get better and some are in complete remission. His patients are treated with few if any side effects. He mails you the drugs, so you are not tied to his Clinic. You could travel.

Of course, Burzynski has absolutely no basis for saying this, since he has never seen a single large scale phase III clinical trial through to publication. That is basically the only way we can establish efficacy, and nobody is going to give Burzynski a pass on this.
They seem to have settled on Burzynski very early in the relapse, as on the 8th Janet announced:
“We are looking into an alternative treatment in Houston at the Burzynski Clinic. Our first appointment is Dec 27. He is doing some innovative research on “personalized targeted therapy based on what stimulates that particular patient’s cancer.” I have already sent a tumor sample to a lab in Arizona for analysis which will then give Dr. Burzynski the information he needs to devise a treatment for me.”
This is the chemo-cocktail option that most of his patients end up on, not the antineoplastons. These biopsies are the clinical equivalent of palm reading, and just as likely to work. His gene-target theory is in no way gene-targeted; he’s blasting people with loads of chemotherapies that have not been tested together.
It’s curious to note here that the day after this entry, while they have an appointment scheduled but have not yet been to the Clinic, Dave is on the Internet defending Burzynski and throwing out numbers like “only 15% get worse.” They’ve been talking to the clinic and they have been given some numbers.
On December 31st, we hear from Dave on the blog:

Dec 27th we saw the ‘notorious’ Dr. Burzynski. We really like him. And his staff, too. They are using very clever technology and their large selection of ‘tools to fight cancer’ to improve their odds of success with Janet. The drugs that they use are all FDA approved, but often for other uses. They call this ‘off label’ use.

On Dec 27th we spent from 10:00 am to 5:30 pm at the clinic seeing doctors, nurses, a nutritionist, a financial adviser and now are much poorer financially but very optimistic regarding Janet’s treatment.

On the 28th they did a PET scan before beginning any treatment. The PET scan showed that many of the worrisome ‘spots’ on the CT scan, were NOT active tumors. They are either dead and not yet assimilated, or they may be scar tissue.

But, there are still some, small, suspicious areas and they are going to treat those.

They really aren’t using clever technology well. Really. But I guarantee that they are going to be using oral phenylbutyrate (PB), manufactured in house and no different from any generic PB.
On the 8th of January, the course of treatment is being laid out:

Janet now has her custom designed treatment regimen or protocol. This consists of 4 oral medications and two infusions (mild chemo-like stuff injected into her veins).She is not having any important side effects at all. She will probably NOT loose her hair.

It’s not a protocol, because this is not a trial. This is alchemy.

Janet’s case is not being treated by any specific anti-neoplastons. We strongly hope that that is because they are not indicated for her and NOT because the FDA does not allow it. We know that many patients in the past were not allowed anti-neoplaston treatment due to FDA legal nightmares, and died because of that.

But, one of her drugs, causes the liver to significantly increase the anti-neoplaston output. These particular anti-neoplastons help correct about 100 of the most common cancer causing genetic defects. So, while it is a drug and not anti-neoplastons, it tells the body to create, sort of a broad-spectrum anti-neoplaston response.

Actually, I’m stunned to the hear this, because he does not seem to realize that this is precisely what people have been screaming at him on the Internet. In brief, Dave is wrong. The PB is what is known as a pro-drug, which needs to be metabolized (in the liver) into theraputic components. The liver is not “increasing antineoplaston output”; it’s doing what it does when it metabolizes phenylbutyrate. The drug was originally intended for urea cycle disorders decades ago, and it is sort of a wonder that Burzynski has repackaged it (and its daughter compounds) as cancer cures. The pharmacological breakdown of this well understood not-at-all-a-miracle can be seen at Respectful Insolence.
Costs for this type of treatment at this time are outlined by “wanda,” who posted here:
I was also a patient at Burzynski Clinic in July this year. I have stage 1v colon or ovarian cancer. Their path lab said the results were inconclusive. Strange two people who were there at the same time I was had inconclusive results also. They were the only other patients I talked to about the results. I spent three weeks in Texas at my own expense of course. Spent 35,000 at Burzynski Clinic and 4,500 more a month for sodium phenylbutyrate. This is the drug they give you to fight your cancer. As far as I can tell this is the drug given to all the patients. As soon as you pay up of course. This is the only drug I recieved from Burzynski as his targeted therapy. As far as gene testing that’s still a mystery to me.I was put on sodium phenylbutrate [working up to 3,000 mg 4 times a day 2 hrs apart with food] and chemo before any testing was done. I could of had chemo here at home and save the trip, time and money. Two other oncologist had already given me that option. One of the chemo drugs I am taking is Zeloda $3,500 at Burzynski for a 2 week supply $1,400 from other pharmacy’s. Spent $400 to talk to their nutritionist got the same info I could have gotten for free on the internet. In short it is to keep the acid level down and the alkaline level up. Their aminocare is something they suggest to all patients also. A list of it’s ingredient are on the aminocare site, or you can buy it on the internet.
Personalized, my patoot. Expensive? You bet. (It’s interesting to note that the pharmacist who runs that blog, who thinks ANP probably works and that Burzynski is a genius, also thinks that Burzynski’s business practices are sketchy.)
While they were at the Clinic, they met Hannah B., a prominent supporter of Burzynski who features in the new Burzynski movie. Pete, her boyfriend, interviewed the Dave and Janet at some length.
At time 12:20, David confirms the prognosis that other doctors gave Janet, 3.5 to 5 years. “That just isn’t good enough,” Janet chimes in.
At 17:20, David begins talking about the exchange that he had at the website above, and David reveals a very sad rationalization trap. This is an illustration of the thought process that keep people going to the Burzynski Clinic. I encourage you to, if nothing else, watch the video from that point on.
On January 23rd, Janet reports having side effects of the (various) chemotherapies she is on, and they are rather debilitating:

Unfortunately, I am having some side effects from one of the drug combinations that I am taking. Actually, they have taken me off the drug that was the main cause, but the damage (large blisters on the soles of my feet, and sore finger tips) will take a while to subside.


[…]

Well, now I’ve got a severe case of Hand-Foot Syndrome. The cure is to stay off my feet, soak them in cold water and put ‘Bag Balm’ on them. I use crutches, wheelchairs and the electric carts at some grocery stores. If I go out at all.

She has lost her hair. They are measuring progress in blood counts:
The [CA125 level of] 63 was from a blood sample Thursday, Feb 2. Down from two weeks earlier at 116.
I looked up this cancer antibody test, but I honestly don’t know how reliable a yardstick it is for day-to-day monitoring.
On February 20th we hear:
Her CA125 from Feb 16 was 40, down from 63 two weeks ago, and 624 at the worst on Nov 8, 2011. “Normal” on the kind of test that they use at SCCA is 0-35.
On March 3rd, we hear that Janet is in the hospital with a perforated bowel. We don’t hear what caused it in the post, but in her “about us” page she says that:
“[…] Janet’s ‘digestive problem’ was diagnosed as ovarian cancer.”
She’s out of the hospital on March 7th, and on the 23rd we hear:

Janet saw her Seattle Oncologist today and got very good news. Her CA125, which is the testing method where “normal” is 35 and below, came back 25!!

On April 2, we find out that she was at yoga class when the perforation occurred and that she is now on the Gerson diet (I strongly doubt that she is doing the coffee enemas with an ileostomy). Apparently the adhesions that cause the next few, blessedly brief, hospitalizations are not uncommon for ovarian cancer patients.
By March 8 we hear she has had no more bowel problems for a month.
Things seem uneventful for several months, as we hear in July 15th:
“Janet is still showing “normal” test scores. That is, the sorts of numbers that a cancer free person has. But, she has one last chemo on July 19, a PET/CT scan on the 30th, a Dr. visit on Aug 2nd and then about 6 weeks later, remove her ileostomy.
On August 8, there is goodish news. It’s kind of a mixed bag.

As you know Janet had a PET/CT scan on the 30th. 45 minutes in the machine with catheter and all. A very elaborate scan. Then Janet saw her doctor on Thursday, Aug 2.

The good news is that the tumors that were seen in the PET scan from Dec 28, 2011 are gone! They were around, but not inside, the liver and in a few other areas. They seem to be gone. The other news is that her CA125 has come up some, but inflammation and many other non-cancer things can cause that.

They were going to have the ileostomy out on the 21st of August, but something horrible happens:

The bad news is that there is new cancer and they were not able to do the takedown or bowel repair.

We are sorry that some of you are hearing this first via the Blog and not by phone or personal email, but we are kind of shocked and also busier than usual. […]

The goal now is to recover from this surgery and then begin an “alternative therapy”. They are doing tests on the tumor samples to see which chemotherapies would work best if we want to go that route. We are keeping all options open, but are leaning toward alternative.

And they do decide to continue on the alternative route:

Janet is going to beat this using the alternatives. Some of our close friends are devout Orthodox Medical practitioners or fans there of. We are sorry that we are going to stress you, but if it is any consolation. She has the Official Opinion from several Orthodox Medical doctors, including her Seattle oncologist, that Orthodox Medicine can do no more for her. So, it is not like she is “refusing help from the Heroes of Orthodox Medicine and being lured away to the Snake Oil Folks.” Your Heroes have written her off.

It’s sad to think what they might have been able to offer back when they decided to go to Burzynski. And now, certainly, they would be able to offer palliative care and help keep her comfortable. The “orthodox” MDs had potentially offered 3 or more years. Burzynski offered an 85% improvement rate, and she got about a year, which is what what about 50% of patients with her type of recurrence have.
In the last months, they are looking into energy medicine, mushrooms, and other unlikely, implausible treatments. They end up going to an “integrative cancer center” in Reno, which I can’t believe is a legal thing. They never managed to correct the problems with her lower intestine; when they finally found a doctor who would do surgery to try to remove the obstructions, they found it just full of cancer. Janet was very dignified and decided to forgo other care. She passed away in Reno on the morning of 17 January 2013.
Burzynski’s treatment seems to have not measurably influenced the outcome.