Burzynski Patient Denise D.’s Story

Denise’s story is especially sad, as she was uninsured and was left to 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 shares with potential donors, including a few scans (look at those whopping charges!):

  • North Cypress Medical Center, Outpatient Infusion Center dated 07/03/09 @ $320.00
  • Burzynski Clinic (monthly charge – PB Rx and Case Management) dated 06/26/09 @ $4,620.00
  • Burzynski Clinic (monthly charge – PB Rx and Case Management) dated 06/18/09 @ $4,184.88
  • Burzynski Clinic (8 tabs of Xeloda Rx) dated 06/15/09 @$327.47
  • Burzynski Clinic (Zometa Rx, one month, required first month purchase from Clinic) dated 05/18/09 @ $1,278.00(comparative pricing)
  • Burzynski Clinic (Zometa infusion procedure, month one,required first month purchase from Clinic) dated 05/18/09 @$240.88
  • Burzynski Clinic (Xeloda Rx, one month, required first month purchase from Clinic) dated 05/15/09 @ $2,620.00(comparative pricing)
  • Burzynski Clinic (Zolinza Rx, one month, required first month purchase from Clinic) dated 05/14/09 @ $3,229.00(comparative pricing)

It looks like she’s being set up for what the Clinic calls “personalized targeted gene-therapy,” but which oncologists 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.

Notice the false equivalence. Heartbreaking.

Her April PET scan is actually really quite bad:

Let’s present the “good” news…

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.

Now, on to the Bad News…

We appear to have Metastasis

There are (most probably) 4 vertebra tumors – T9, L2, L3, L5 and possibly the mid sacrum (definition of sacrum) or see this illustration

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.

And… for the cherry on top of my party

Since we have activity in the bones and (probably) liver, we need to do a scan to check the brain cuz breast cancer typically metastasis to the bones, liver and brain.

At this point, I’m looking less like a Stage 2 and more like a Stage 4.

And she follows this with, god, the most direct statement about having cancer I have seen:

It’s a party.

In my Body

A cancer Party.

It’s my party and I’ll cry if I want to.

I’m screaming.

She is quite eloquent and often expresses her fears in verse:

Painful Reminders

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 and:

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.

On May 8th she goes in to talk to the Burzynski nutritionist. She takes pictures of the consult scans the notes and handouts from the Clinic. It turns out they were mostly nutrition downloads from the web.

Denise is under some duress. On May 10, 2008 she makes an announcement:

Burzynski Officially

Its Official.

I’ve decided to stop chemo and start treatment at The Burzynski Clinic.

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 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. As evidence, two days later she starts on sodium phenylbutrate [or “PB”], an orphaned urea cycle drug that Burzynski manufactures and sells off-label as part of his cancer treatment regimen. Oddly, she quotes the NCI’s position of this compound:

“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,” but she does it. These desperate people need to be protected.

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. That statement about the “96 minor genes” sure sounds specific. So where did that number come from? Surely not NCI.

On May 13 she starts on Tarceva:

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.

She starts on Burzynski’s anti-aging pill, but this is right before we see the whopping Burzynski bill for May, which is guaranteed to age you:

Consultation @ $750.00

Nutritionist @ $350.00

PET / CT Scan (Houston Imaging) at $1,200.00

Xeloda @ $2,897/month

Zolinza @ $2,217/month

Tarceva @ $4,200/month

Sodium Phenylbutrate (aka PB) and “Case Managment” @ $4,500/month

Zometa @ $1,087/month

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

The magic potion. She actually said it. And things start to get a little more dire on June 17th as the Clinic starts to go all Scientology on Denise:

Burzynski Clinic – More Charges.

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.

Her next bill:

Burzynski Clinic Monthly Charge – June 2009

My June 2009 hit… Sodium Phenylbutrate, AminoCare A10 and Case Management… $4,184.88.

On June 22nd she reports all sorts of aches and pains, and worries that the cancer is spreading all over her.
This is one of the first times a full account has been maintained by the person receiving the treatment (something that certainly 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 we certainly don’t want to be accused of making any of this up, so I will break from habit and quote at length:
I received yet Another call regarding finances from the Burzynski Clinic. Seems they are not satisfied with the $4500 per month for the Sodium Phenylbutyrate and “Case Management”, PLUS the $1000 per month for administering manufacturer provided Zometa infusion. NOW – since I am receiving assistance with my medications, and not purchasing from the Clinic – they intend to charge me $1500 for a “Medication Management” fee.
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.
Look at the state of the poor woman the Burzynski Clinic is doing this to:
CUT ME SOME SLACK.
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.
The confrontation with the Financial Coordinator, Barbara Tomaszewski, is simply a ghastly shakedown:
Off On A Hunt – Finding An Infusion Center

It was a Busy day today…

When I talked with Barbara T (the Financial Manager) at the Burzynski Clinic and told her that the charge of $1000 per infusion AND an Additional $1500/month to handle” the (3 small vials of) Zometa was just more than I could afford, she told me “Well, we have to survive here”.

Excuse me? How About Me Surviving Here? If I can’t afford to stay at the Clinic, then I can’t pay for You to “survive” and if I’m dead, then I certainly am not paying for Your “survival”…

This is why this site exists. Perhaps if we keep writing, we will eventually find the words to express our horror at the breathtaking arrogance, cruelty, and lack of human compassion. You know where Burzynski lives “survives”? In the words of Andy Lewis a:
“…10 acre, 15 thousand square foot, $6 million dollar residence with 15 bathrooms, saunas and swimming pools.”
Yeah, he’s just squeaking by. Wanna see his front yard?
Yes, his initials “SRB” 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.
Her July bill:

Burzynski Clinic Monthly Charge – July 2009

My July 2009 hit… Sodium Phenylbutrate, AminoCare A10 and Case Management… $4,620.00.

She gets her next infusion two weeks late because of the insane charges of the Burzynski Clinic:

Houston, We Have Infusion!So I’ve got the final OK – I have found a location to receive my Much Needed and Long Overdue infusion of Zometa! YAY!

Much Needed and Long Overdue by 2 weeks. Two weeks that have past while I was struggling to find a solution to a problem that should NOT have existed.

The location will be North Cypress Medical Center – Ambulatory Infusion Therapy Center. Let’s hope their infusion procedures are better than the PET/CT Scan procedures of the North Cypress Medical Center Imaging Center which – supposedly – are not quite as close to protocol as they should be…

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)

On August 10th, she has her 3rd PET scan. The next day she has a bone scan. When the results are in, her lymph nodes seem to be clear on the PET scan (she is on chemo, after all), but the spots on her spine look worrisome. Overall, she is doing a bit of a happy dance.

On August 25, she alerts us to the fact that she has run out of money.

Tuesday, August 25th, 2009

September Meds

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).
Monday, August 31st, 2009
Stalled

Last night (Sunday) was my last dose of Sodium Phenylbutrate… my last 8 pills from my August supply. And my last dose of AmnioCare A10 (which appears to be a form of the Antineoplaston Therapy)… my last 2 pills from my August supply. The last of my supply…

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 prescription, she tries to get something in writing, and what happens is SO SHADY. Merciless, parasitic.
Tuesday, September 1st, 2009

Compromise…

So, I have a compromise… of sorts. HA.

Today I talked with one of the financial people at Burzynski Clinic, and they are “willing” to let me have 2 weeks of Sodium Phenylbutrate for a payment of $2,250.00.

However, they AGAIN want to collect $1,500.00 to “manage” my medications. ”Managing” means to submit refills for the Tarceva, Xeloda, Zolinza and Zometa – which are all due.

That’s All

Simply Submit The Refills to the drug companies = $1,500.00.

WTHeck??

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.

W.T.HECK??

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.

Monday, September 7th, 2009

Back on PB – for now

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.

NOBODY DESERVES THIS.

Tuesday, September 8th, 2009

Bending Over The Barrel

Since he helped before with my prescription of Zometa, I was presuming, assuming, hoping that my Primary Care Physician (PCP) would be amicable to handling the reorders (Rx refills) for the Tarceva, Zolinza, and Xeloda. This would eliminate the need to come up with the extra $1,500.00 that Burzynski Clinic is demanding in order to write my prescription refills. This would have taken a Huge stress off of me.

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.

So, I am back to dealing with the $1,500.00 “Medication Management” charge from Burzynski Clinic.

I am currently out of Xeloda, should have restarted today. But I have no reorder, no refill.

Unless I pay Burzynski Clinic the $1,500.00

They have me over a barrel.

Bending me.

Luckily, her PCP fills the prescriptions for her next round of chemotherapy. What a hell of a position they have her in, and she’s in the same position the next month:

Tuesday, October 6th, 2009

Burzynski Clinic Monthly Charge – October 2009

Again, I am short on finances, so – like last month – I have to scrape and scrounge to afford to pay for my monthly supply ofSodium Phenylbutyrate (PB) meds from the Burzynski Clinic.

The cost is $4,500.00 for 1 month of Sodium Phenylbutrate,AminoCare A10 and Case Management…

More than twice my entire monthly salary for only ONE of five medications that I take to arm me in this fight.

I’ve now gone through the small amount of savings I had, gone through the donations that have come in.

On the 12th she posts a poem:

Monday, October 12th, 2009

Swimming With The Sharks…

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
Imperative for
Survival

I awoke with
Heart racing
Adrenaline pumping
Terror coursing
Through my body

Alone
In the dark

I hope the dolphin survived…

On October 19, she writes a post that haunts me personally.

I’m having a lot of hits, from people searching for “Sara Sullivan”. They hit on the post that I wrote about her passing and my feelings. Many have included the word “donate” in their search.

Yes, Sara and I are different… different women

She was young… I am older

She had a loving and supportive husband, partner… I am single, alone […]

I wish these people
who search for a way to donate to Sara Sullivan’s cause
would consider
donating a little to me, to my cause
so that some day soon
someone else
is not
writing about
my passing.

I’m very sorry, Denise. I’m so, so sorry.

She struggles to make ends meet again the next month…and now we hear something that is really rather odd. A weird technicality that the Clinic is exploiting, perhaps?

Monday, November 9th, 2009Burzynski Clinic Monthly Charge – November 2009

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.

The cost is $4,500.00 for a month of Case Management which includes the Sodium Phenylbutrate, AminoCare A10…[emphasis added]

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.

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.

In mid-January, she is aching all over and she believes the tumor in her breast is growing. She moves a PET scan up from the end of February to as soon as possible.

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…
cancer Sucks!
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,
Beci
Asst Moderator
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…
That was her last post on the board.
We later find that she has moved back to Corpus Christi to be with her parents and get periodic updates from board members:
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 friend.
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!
Just a few months later, her facebook page has become a memorial, a place for her friends to meet and remember her.
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.