*An appeal to encourage Congress to investigate this follows Denise’s story*
Denise’s story is especially sad, as she was uninsured and was left the generosity of the free market even before she went to Burzynski. She was 49 and single–her partner, Clifford, left shortly after the diagnosis in Feb 2009. It’s a little baffling to me, a layperson, as to how the first two physicians misdiagnosed her with mastitis for 9 months given that her mother had survived breast cancer. She shares the whole story of this period in this podcast. Nonetheless, when she was diagnosed, she began the normal course of chemotherapy treatment.
Chemo was really, really harsh on Denise, however, and she made an appointment at the Burzynski Clinic on the recommendation of her father, who had read about him in Burzynski’s chum Julian Whitaker’s book. I hold Whitaker partly responsible for what happened here. I’m sure he feels nothing but remorse.
Denise was in a bad spot. She worked as a temp, and she was desperate. It comes through in every line she writes:
I don’t want to die. I Want To Live. Except I don’t have the insurance, and I don’t have the money. It’s going to be a tough fight, I know. Tougher than anything I have ever done. [...]
I am more scared than I have ever been…
But I Do Not Want To Die.
This is the state that people are in when they flee to Burzynski. And he turns that to his advantage. In mid April, she is at Burzynski’s office for a consult, according to the billing records she shared with potential donors, including a few scans (look at those whopping charges at the bottom!):
It looks like she’s being set up for what the Clinic calls “personalized targeted gene-therapy,” but which real doctors call a “chemo cocktail“:
Tumor Markers – Baseline
I had some blood work done which will chart my tumor markers, specifically something called CEA… My last oncologist never did this test, so I have idea what my baseline was, but Burzynski Clinic uses them, as does MD Anderson, so I have to hope they mean something.
From what I’ve found online, it appears that some Drs find Tumor Markers a good resource, while others don’t place much weight on such tests as a diagnosing tool.
While the size/condition of the breast tumor has not diminished enough to be considered significant, the activity within the 6 lymph nodes Has decreased considerably. So, the “evil of chemotherapy” seems to have done Some good Despite the “totally wrong” vitamin regime I was on.
So… the backache I’ve had the past 6 months is Not attributed to my weight or being out of shape, it’s most likely attributed to cancer in my bones.
Her blood work is bad too:
My liver enzymes are up very high. Too high. So high in fact, that it’s indicative of metastasis to the liver. Those results won’t be in til early next week (April 20-24), but it’s pretty much a given.
Every time I move,
I realize that the dull ache in my back
Now has the designation of cancer.
I wonder about my headaches
Are they, as I was told, Chemo Headaches
Or will they too be designated as cancer.
I’m not ready for this…
On the 30th, she sees her father’s oncologist for a third opinion. This doctor has his act together:
strongly suggests that I continue to follow the traditional treatment / recovery of chemo – surgery – radiation; he recommends a smaller dose of chemo, administered every week for 12 weeks, vs a larger dose administered every other week for 8 weeks.
If I continue on the chemo path of treatment / recovery, this is definitely something I’d look into.
This is a Big Decision and I HOPE its the right now.
I FEEL it’s the right one, but I’ve not always made the best decisions in my life…
At this point, she has given up legitimate treatment that has been vetted by the best minds in cancer and refined over decades to go to the Burzynski Clinic, which is a one-trick pony.
On May 12, she starts sodium phenylbutrate, and she quotes the NCI’s position of this compound, which I find baffling:
“However, there is no adequate evidence in the peer-reviewed published medical literature demonstrating that the use of sodium phenylbutyrate improves the clinical outcomes of patients with cancers of the prostate, breast, or cancers other than acute promyelocytic leukemia and malignant glioma. Current evidence is limited to in vitro and in vivo studies and Phase I studies. Prospective Phase III clinical outcome studies are necessary to determine the clinical effectiveness of sodium phenylbutyrate for cancer.”
So, what they are saying is, “Don’t take this yet for what you have.” And she does it?
At The Clinic, PB is given to cover 96 of the minor genes that can’t be checked / addressed with conventional treatment.
I start with 1 tablet 4 times a day. Each day I add an additional tablet until I am up to 6 tablets 4 times a times (for a daily total of 24 tablets). This is done to make sure I can tolerate the drug and the increases in dosage.
It’s an expensive drug – $4500/month from The Clinic. This includes “case management” – which means I get to communicate with my Dr whenever I need to. Kinda what I thought a Dr was for, but guess it’s now called “case management”. There is no petition for financial assistance.
They sure don’t make it financially easy to stay alive… Maybe if it was more feasible, more people could afford it, and the cost would come down… maybe…?? I guess the bullet had to be bitten somewhere, and I guess it’s been determined that it is the patients who need to do the biting. Seems we get it coming and going…[emphasis added]
There is no petition for financial assistance because it comes from Burzynski.
On May 13 she starts on Tarceva:
Today I started on Tarceva, which is typically used to treat Advanced Non-Small Cell Lung Cancer and Advanced Pancreatic Cancer. I’ll take one 150mg pill per day. [...]
Another very expensive drug at $4200/month. I can, and intend to, petition the manufacturer for financial assistance.
On the 14th she starts on Zolinza:
Today I started on Zolinza, an oral HDAC inhibitor which prevents DNA transcription and gene expression in some tumor cells – typically Cutaneous T-cell lymphomas. I’ll take one 100mg pill per day. [...]
Another very expensive drug at $2217/month. I can, and intend to, petition the manufacturer for financial assistance.
On the 15th, she starts Xeloda:
Today I started on Xeloda, the first FDA-approved oral chemotherapy for both metastatic breast and colorectal cancer.
Another very expensive drug at $2897/month. I can, and intend to, petition the manufacturer for financial assistance.
On the 16th, friends and family host a spaghetti dinner fundraiser:
On the 18th, she starts Zometa:
Today I took my first monthly infusion of Zometa, I will have 4mg/5ml each month.[...]
Yet another very expensive drug at $1087/month. I can, and intend to, petition the manufacturer for financial assistance.
The whole time, by the way, she is taking pictures inside the clinic and at treatment and during fundraising events.
That puts my total medication expenses for May at $17,901.00
She is getting some assistance on a number of her drugs, she reports, but look at how she describes it:
Getting the Gene Therapy meds directly from the manufacturer eliminates a great deal of cost and stress from my life. And, truthfully – 2 out of 4 is not bad. But Honestly, I was Hoping to get assistance for all 4. It would be different if I had insurance, if I Had the money to afford to stay alive – I’m simply doing the best I can to stay alive. I Want to stay alive.
There is no financial assistance, though, for the PB prescription – that’s a flat $4500/month and is manufactured by the Burzynski-associated pharmacy, and is a proprietary formula. So, even if I was able to get assistance for a generic brand PB, it would not be the formulation that offered the Burzynski “magic potion”.
And I Want The Magic Potion. At least Dr. Deleon says it’s in the PB that I’m getting
I received word from the Burzynski Clinic today that I have an outstanding balance to pay. A little over $4000.
Ok, I got a shipment of Sodium Phenylbutyrate and I was waiting on a bill to come. But they are acting like I committed some kind of crime, and stopped any services. Of Course I intend to pay! I chose this path because I Truly Believe in it.
Yes, I paid.
I was also informed that I will have to pay a $1000 infusion fee with the Zometa – per infusion. What The Heck? $1000?? Per Infusion?? I was only paying about $300 per infusion for chemo!
I’m suddenly getting a Reeeeally bad feeling about all this…
Wow. Waiting for a bill…they don’t just threaten to cut her off, they actually cut her off entirely, presumably to die. That’s one scary, manipulative place. But she pays.
This is interesting. This is one of the first times a full account has been maintained by the person receiving the treatment (something that works in Burzynski’s favor). She has the whole story and shares. On June 23rd, a new round of unexpected fees and charges from the Burzynski Clinic, those vultures. This is important, and I certainly don’t want to be accused of making any of this up, so I will break from habit and quote at length:
What The Heck?? With the exception of the Zometa, the meds are shipped directly to me. The Zometa is shipped in a 3 month supply and stored at the Clinic… and they want to charge me $1500 a month for that? To store 3 small bags??
Burzynski Clinic Drs are the ones who told me to go to the manufacturer’s and submit for assistance. They NEVER said ANYTHING about charging me Anything thing if I did get assistance!
I’M The One who got all the paperwork together and sent everything in. I’M the one who had to be sure the Clinic Drs got the forms completed and faxed in.
Seems every time I turn around, another triple zero fee is being added to my account.
Do they NOT realize that over charging does NOT help their bottom line, all it does is make treatment less accessible to more people?? I’ve referred at Least 4 people to the Clinic, NOT cuz I get any reimbursement, but because I Truly Believe. HOW can I continue to refer when I see how charges are added without consideration?
I don’t mind paying my fair share, but I DO have a problem with people kicking others when they are down. And Right Now – I Am Down. So Stop Kicking!
Yes, I believe in Burzynski’s protocol and treatment – TOTALLY. But I’m suddenly not sure if I’ll be able to continue on this path… nor to recommend it to others… And That Scares the Heck Out of Me.
I swear, I am so STRESSED Right Now, if I get One More Thing on added to my “Gotta Get This Done NOW” list, I think I am going to blow a flipping gasket.
I HAVE BREAST CANCER which (according to test results) HAS SPREAD TO MY BONES and I HAVE NO HEALTH INSURANCE. I am (STILL) FIGHTING for Treatment and Medicinal Assistance. I am SCARED OUT OF THIS WORLD. I also Have To WORK FULL TIME. THAT is where my time is going.
Yes, his initials are in gold across the electronic gate. The story continues:
Then she looked me in the eye and Said “You are the one getting your medicine for free, right?”, like because I am getting financial assistance with my meds, that means I have the $2500/month extra to spend on other (unexpected) charges?
Nooooo… I’m getting the financial assistance because I don’t have health insurance and because I can’t afford the meds… I was Told $4500/month for my PB and my Case Management, I Signed a Paper Stating $4500/month, and That is what I have budgeted for.
If you can call applying for financial assistance, compiling info on organizing fundraisers and getting ready to sell on eBay “budgeting”… more on eBay (TeamDenise) later…
I guess they must have more patients than they can handle to not care if someone is unable to afford their services due to unexpected And Substantial increases in charges.
She’s a good person. She has faith in people. She is betrayed:
I swear, I’m starting to feel like this unconditional faith is similar to the years of faith I put in Clifford and look how That bit me in the big behind! Big.Time.
She has another physician fill out her prescription and submit it. She has it delivered to an infusing clinic which charges a fraction of what the Burzynski Clinic does.
I’ve talked with Novartis Oncology Patient Assistance Program, and they are good to ship my “new” prescription of Zometa directly to the NCMC Infusion Therapy Center Pharmacy, so the Burzynski Clinic will have no handling of the 3 small vials of Zometa, so there SHOULD be no need for any $1500/month charge for “Medicine Management”.
The total infusion charges will now be $310.78 per month (just a little bit higher than originally suggested, but still Much lower than the $1000 at the Burzynski Clinic)
Its time to get my September meds from Burzynski Clinic, and I’m afraid that I don’t have the finances to cover the monthly cost.
And she runs out of funds. And she goes off the treatment. And this causes her distress. And it doesn’t matter that the Burzynski pills are probably as effective as giving the tumors a stern talking to, damn it, her suffering and fear is real and entirely unnecessary (as is her poverty).
I haven’t been able to pay for my September supply yet. I’m trying to get the money for September, but until I do, I’ll have to forego part of my treatment. That’s kinda scary, expecially since I just had bloodwork done and am waiting the results.
And holy cow! When Denise is offered an extension of her perscription, she tries to get something in writing, and what happens is SO SHADY. Merciless, parasitic.
Simply Submit The Refills to the drug companies = $1,500.00.
I JUST informed them that I cannot afford the charge for my meds this month and they wanna ADD AN ADDITIONAL $1,500.00??
Funny thing is, that when I stated that I wanted a copy of this “new policy” in writing, I was told that it’s not in writing, it’s a verbal thing, that all new patients are being advised of the same policy.
This is a serious irregularity. I’m stunned that this is allowed to go on. They are stringing this poor woman along. What she earns–they take it all.
I was Finally able to pick up a portion of Sodium Phenylbutyrate(PB) on Friday. Was Supposed to pick it up on Thursday, but the Clinic got the info mixed up and then there was some confusion on their end, so I couldn’t pick up the entire month, but will be able to pick up the rest so this coming Wednesday…
Had to pay for what I did pick up and that was 1/2 month at a cost of $2,250.00.
I mean…my god, look at this. NOBODY DESERVES THIS.
I had talked with the Drug Company PAP Reps and cleared with all to change the Doctor in charge of Rx reorders (refills) Dr from Burzynski to my PCP. All was good to go.
Guess I shoulda cleared with my PCP first and not ASS-U-M’ed, cuz I get the message that he is not good to go. He is not comfortable with writing Rx for cancer meds as he is an Internist and not an Oncologist.
Last night I awoke numerous times with night terrors.
I have no memories, except the last one.
I dreamed of a dolphin
Pursued by sharks
There was a wound on the left side
Of the dolphin
Bloodied, with flesh exposed
The wound was not severe
But the battle for life was
The instinct that flight was
I awoke with
Through my body
In the dark
I hope the dolphin survived…
On October 19, she writes a post that haunts me personally.
Again, I am short on finances, so I have to scrape to come up with my payment.
I’ve been saying the charge is for the monthly supply of Sodium Phenylbutyrate (PB) meds from the Burzynski Clinic, but I’ve come to be informed that I am a clinical trial, and as such, do not pay for medication. What I pay for is the case management – for medical case management.
I get the PB meds for “free”.
Ok, still doesn’t change the fact that I am not going to be able to afford this much longer unless something happens.
This is unacceptable by any standard, and I hope the Texas Medical Board is reading this. You don’t just “one day learn” that you are in a clinical trial. Nobody can just take someone’s data and use it however they like. You have to be given the option to opt out. She is being denied informed consent to be in an experiment. What IRB signed off on this? And why do they walk free? This is the type of behavior that put Burzynski’s medical license in jeopardy last year.
They do another PET scan on November 19th. We have not seen much clear progress from the treatment. She is spending very little time at the Clinic, stopping in apparently monthly to pick up her sodium phenylbutrate. It’s not like the month long training sessions that we’ve seen time after time.
On Nov 20th, she loses her job with Exxon Mobile, where she had been temping. She thinks its related to an interview she had with the company for a permanent position where she disclosed that she had cancer.
Her PET scan comes back with good news. The tumor is not growing, it’s not active. Nonetheless, she is in a pretty difficult depression, it seems.
And then her online journal ends. It ends with February 2010.
She continues to post consistently on a gardening hobbyist board she started in 2004. She keeps her medical issues out of it for the most part, though when we hear in Oct 2010 that she has started a new cancer treatment, she mentions that it kept her from attending a plant swap:
Dear Members,Sounds like y’all had a GREAT time! I’m so sorry that I missed it… I’m
dealing with a new treatment path, and unfortunately the side effects make it
difficult for me to function early in the morning/day. Hopefully I’ll be at the
next one! [...]
As far as the cancer I am fighting – I keep reminding myself that this too shall
pass. Please keep me in your prayers denise
Living while Fighting, Surviving metastatic breast cancer…
In June 2011, we the members of her gardening bulletin board arrange for a day working in Denise’s yard:
Denise needs help with getting her yard in order. If any
Houston-Plant-Exchange members would be interested in participating in a work
day at Madame Moderator Denise’s home please contact me directly. I would like
to coordinate for sometime in the fall, it is just too hot now. So, let me
here from you and we can get started with the planning and pack a picnic and
have an awesome time.Jennifer, do we have a tentative date for the Fall Plant SwapThanks,
Please call me if you have time to help our group founder, Denise. She needs
someone to go to her home and get ALL her potted plants to take care of. She
said there are only about 5 or so. She is in the hospital and cannot physically
get them. You need to have time to go get them and keep them watered. She
needs a few other plant related “honey do’s” done also.
In February 2012, it sounds like she is moving. Her landlord had waived her rent for her when she got cancer:
Finishing up with my moving sale and have some pots left over. If anyone is
interested in free pots – plastic and ceramic, decorative and nursery – get in
touch with me. I’m moving very soon, so Must be picked up by Wednesday, Feb 29.Thanks!denise
Living while Fighting stage 4 metastatic breast cancer…
P.S. HPE Madame Group Owner, Denise aka lilybloomers, has finally gotten her
home packed up and she has moved to Corpus Christi to live with her parents so
that she can continue to fight her battle with breast cancer. Be strong my
In November 2012, we get the sad news:
The creator/founder of the Houston Plant Exchange group has lost her battle
with breast cancer. We are all very saddened by this news. We are
grateful to her for her for all her hard work, energy and determination that
she put into making this group successful. Several similar groups in other
cities were started based on the HPE group, with Denise’s assistance. Oddly
she wasn’t even really a plant enthusiast like many of us, but she saw a
need, and somehow succeeded despite this, where many other similar groups had
failed. She was an avid board gamer, and was instrumental in starting
many board gaming groups here in the Houston area. She was a tough, strong
person when she needed to be, but had a heart of gold and a wonderful fun
spirit. She will be very much missed!
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.