Random Thoughts On This Saturday Morning

Lori had chemo yesterday. Her tumor markers continue to go down, they are now around 49. 

This is down from a high of over 80 a few months ago.

So, there is absolutely no question the chemo cocktail of Avastin, Holaven, and Xaloda works for her.

United Health Care (UHC) is still refusing to pay for treatment. Says no "proof" it extends patients life. FDA is just as bad.

Baylor Oncology doctors have filed an expedited appeal which should be ruled on by this coming Tuesday April 22nd. 

Hopefully, the UHC board will reverse themselves and do the "right" thing. 

In case they do not we are now looking at legal remedies such as a "bad faith" denial claim.

The social pressure from all of you helps, please keep pouring it on. 

This is no longer about just one woman's life. This "cocktail" could extend the lives of thousands or more women in similar situations.

The denial by UHC to pay for this treatment after the decades of us paying expensive premiums to them for premimum health care insurance is not just wrong for Lori, but a larger symptom of what is wrong in America with health care. 

Yes, I agree with the "Democrats" on this one. 

Health care should be a fundamental human (and for all non-human animals) right.

One thought for sure this morning. This fight is going to be like nothing UHC has seen before. 

On another thought train, we are within two weeks or so of stocking the first pond at new facility here in Texas. 

Very exciting. We have put together an amazing team. 

And over the next few months as people start to become more aware of what the technology we have developed can do, global interest (already increasing) is going to sky rocket.

One thought that is starting to be repeated in my head over and over is that now may well be the time I need to start looking at a serious partner to help us take what we have developed and have perfected in growing very large white shrimp sustainably, and start looking seriously at bringing two or three species of fin fish into the system. 

Since we retooled the entire Global Blue Technologies system starting in 2011 and abandoned the system and structure and methodology that we had ended up with in South Africa back in 2007, we have been able to fine tune our ability to grow enormous amounts of marine protein sustainability and efficiently in the re-circulating aquaculture system we developed. 

Despite the fact that we know our original work began in 1998 and despite the fact we know every step of the process occurred including our failures and successes, there still continues to be a large number of "pretenders" claiming they do what we do, or that they were the ones who did it first, etc. 

I say to all, if you can produce marine protein efficiently, sustainability, and in an environmentally sound way, bring it on. 

The world needs it. 

God knows, the world's oceans and the creatures that inhabit them need a break.

I am of the camp that believes wars will soon be fought over food and water, not oil and gas.

For a better understanding of how the GBT system evolved I again urge you to go the the globalbluetechnologies.com web site and read about the "evolution of GBT".

Finally a few random thoughts. 

These past few weeks a lot of fears, insecurities, doubts, and other  not so positive thoughts have crept (at times) into my mind

Then the other night I watched on "you tube" the segment from the Disney movie "Frozen" where the young female character sang the (now a global phenomenon) song, "Let it Go". 

(The same song that just won an Academy Award).  

Do yourself a favor and watch and listen to the words of the song.

I do not agree with those who maintain it is a song for children and young people, though I can see its strong appeal to them. 

My thought after hearing the words and understanding the story, is that the song is a life affirming message that reminds everyone, that we as individuals still count as an individual, and there in nothing wrong with being different.

Plato said one time, (in some ancient tome, the title of which I can no longer recall) that "there is no such thing as a "forest" there is just a bunch of individual trees that we call a forest to allow us to order our world".

This is why I abhor those people who harm animals for sport or fun and claim it is for "the good of the species". 

A "species" does not suffer, only individuals feel pain, and fear, and anxiety. 

Good and decency comes in all forms and what may appear a liability at times can often if one stays focused become a driving force for success and progress.

As I watched the animated segment from "Frozen", I was reminded of another saying from my grandmother. 

"Never let religion get in the way of God". 

I leave that for you to ponder as my final thought on this Saturday morning. 

HELP !!!!!!!!

My grandmother always said, "God never gives you more than you can handle". 

I think that may be true. 

I guess we have go learn to handle what the world throws at us. 

Then again in the the words of Patrick Swayze in the movie Roadhouse  "it is amazing what you can get used to".

In any case this blog is a very simple one. 

I am begging for your help. 

The following appeal was written by my friend and partner of almost 20 years, John Aquilino, Jr. 

It has to do with my wife, Lori and a recent development that has devastated us and her in her fight aginat metastatic triple negative breast cancer "tnbc".

For those of you who read this blog regularly and have followed  Lori's incredible fight John's story will hopefully galvanize you to action. Lori needs your help. We need your help. 

And for the tens of of thousands of women around the world who have or may someday face this dreaded disease called "The Beast" we pray you will respond.

We need you to crash the webs sites below and to tie up their phone lines and to write so many letters they can not handle the load and they, be it UHC, the FDA, whomever, will do whatever it takes to get UHC to start to pay for Lori's treatment using Avastin again. 

                                     Lori is winning. 

        Her cancer is in retreat and now they want to pull the plug. 

                         This is Lori during Thanksgiving 2013. 

Thanks. Please act today, Do not wait. Lori cannot afford to wait. 

 TNBC HOPE & Plea for Help: by John Aquilino, Jr. 

There is real hope for women with metastatic Triple Negative Breast Cancer.

The Good News:

Dr. Joyce O’Shaunessy devised a combination of drugs for Lori Jean White, a patient she is treating at Baylor Charles A. Sammons Cancer Center in Dallas, Texas.

The trio of Avastin (bevacizumab), Halaven (eribulin mesylate), and Xeloda (capecitabine) is working.

Lori’s tumor markers have receded from 75 to 50.  Her brain mets are virtually non-existent and a 4 cm tumor on her liver is shrinking.  This is not a cure…but it is beating back Triple Negative Breast Cancer and extending Lori’s life until research in immunotherapy can defeat cancer once and for all!

Despite an initial four month “expriation date” decree, in February 2011, Lori White has survived for 37 months after being treated at Maryland’s Suburban Hospital, MD Anderson in Houston, clinical trials at Johns Hopkins, Georgetown University, the National Cancer Institute and Mary Crowley Cancer Research Center in Dallas.  

Regardless of the treatment prior to Dr. O’Shaunessy’s Avastin, Halaven, Xeloda combination, Lori’s brain mets reoccurred followed by the liver tumor. Now with this treatment they have receded!!!!

The Bad News:

United Health Care now refuses to pay for the Avastin – an out of pocket expense in excess of $15,000 a treatment claiming FDA does not approve of Avastin to treat breast cancer and that the O’Shaunessy treatment is “experimental” in spite of the fact that it is working.

Background:

 Avastin years ago proved its ability to inhibit metastatic breast cancer.  In 2011 an “outside” advisory group persuaded FDA to revoke approval of Avastin to treat breast cancer due to their conclusion that the literature showed no benefit of extending or improving quality of life while never denying it did slow the progression of metastatic breast cancer.

United Health Care used that questionable conclusion to determine that the combination of drugs “has not been proven to be effective in the combination requested.”  They are blatantly ignoring the success of the therapy for Lori White and another of Dr. O’Shaunessy’s patients.

United Healthcare’s Duplicity

In its mission statement, UHC claims “our mission is to help people live better lives.”  UHC boasts of its role of “Innovation” saying it devotes “our collective resources …to continuously testing new, targeted ways to raise the bar in health.”  Its corporate “Code of Conduct” lists five values it says drive the company: Integrity, Compassion, Relationships, Innovation, and Performance.” 

Without Avastin in the chemo “cocktail” prescribed by Dr. O’Shaunessy, Lori White will die.  By denying Lori White this three-drug combination, United Healthcare is condemning tens of thousands of other women to die.  Is that Compassion?  Is that integrity? 

That same Code of Conduct says UHC “always acts in the best interest of our customers, consumers and community…”  Is condemning one or ten thousand women to death in their “best interest” or the “best interest of the community?”  The UHC Code of Conduct brochure has a headline blazoned across it: “Never Compromise Ethics.” 

Dr. O’Shaunessy’s treatment using Avastin, Halaven, and Xeloda in combination is working were other therapies failed.  That combination has the potential of extending and saving the lives of countless TNBC afflicted women.  AND UNITED HEALTHCARE SAYS…WE DON’T CARE!

WHERE ARE THE ETHICS IN THAT!

We Need Your Help!

Last year UHC earned $7.3 billion dollars on revenues of $113.8 billion dollars. 

United Healthcare cares about their profits, not about your lives.

Make them feel your outrage.  It’s time to flood their phone lines and mail room with the demand that they pay for this important therapy.  They need to hear from you so other TNBC patients might live.

Call them.  Write them.  Send this to your local radio, television and social media outlets.

UHC from the top executive to its appeals unit needs to hear your voice.

Tell United Health Group & United HealthCare to:

·        Pay for Avastin for Lori Jean White Member ID-913018014:

·       And save countless TNBC patients’ lives

United Health Group CEO – Stephen J. Hemsley

800 328-5979

PO Box 1459

Minneapolis, MN 55440

United Healthcare CEO - Gail K. Boudreaux

866 633-2446

UnitedHealthcare Appeals Unit

PO Box 30573

Salt Lake City, UT 84130-0573

FAX 801-994-1083

Tell the FDA –

·       Approve the use of Avastin for metastatic breast cancer

·       Tell United Healthcare to pay for its use against breast cancer

FDA Commissioner – Dr. Margaret A. Hamburg via her Executive Assistant Angela Hoague

·       Angela.hoague@fda.hhs.gov

FDA Assistant Commissioner for Women’s Health – Marsha Hendersen

·       301 796-9440

·       Assistant Commissioner for Women’s Health

FDA

10903 New Hampshire Avenue

W.O.32-2333

Silver Spring, MD 20993

Bad Day at Black Rock

When I was a kid I watched a a movie that made an impression on me for life.

It was made in 1955, but I probably did not watch it until around 1963.

It starred Spencer Tracy, Ernest Borgnine Robert Ryan, Anne Francais, Walter Brennan, Dean Jagger, and a host of stars.

It was directed by John Sturges.

It was called "Bad Day at Black Rock".

The plot was fascinating. 

The time is 1945, just after the end of World War II. The great railroad train Streamliner stops at the town of Black Rock Arizona. The train discharges a single passenger with only one arm named John J. Macreedy.The conductor comments that this is the first time in four years that the train has stopped there. Macreedy replies that he is only staying for one day, and the conductor comments that "in a place like this a day can be a lifetime." The train departs. Macreedy is confronted by the stationmaster who complains that he had not been informed that the Streamliner was stopping, to which Macreedy replies "Maybe they didn't think it was important." Macreedy asks the stationmaster if he can get a cab to Adobe Flat. The stationmaster replies "no cab." Macreedy then asks if the hotel is open, and the stationmaster nods. Macreedy walks into town. When the townsfolk learn that Macreedy wants to visit nearby Adobe Flat, they react with extreme suspicion and hostility. Pete Wirth, the hotel keeper, tries using a bogus excuse about war restrictions to deny renting a room even though it is obvious the hotel has vacancies. After persistence, Macreedy rents a room, only to be harassed by a cowboy named Hector for no apparent reason. Macreedy's attempts to rent a car create further hostility, prompting another local, Reno Smith, to have a private detective he knows in Los Angeles check out Macreedy's background. Macreedy then visits the sheriff's office only to find that the sheriff, Tim Horn, is an ineffectual drunken sot. Macreedy mentions that he is trying to locate a farmer named Kumoko at Adobe Flat and Horn becomes as hostile as the rest of town. Smith then accosts Macreedy feigning friendliness. Macreedy asks about Kumoko, and Smith tells him that Kumoko was sent to an internment camp after the start of the war. Pete's sister Liz drives up in her jeep and rents it to Macreedy, who drives off to Adobe Flat. Despite Liz's assurance that Macreedy will find nothing and Horn's feeble attempts to assert his authority, Smith, after hearing from the private eye that there are no records on Macreedy, orders another local, Coley Trimble, to get rid of Macreedy, despite protests from Pete and the town doctor, Doc Velie. At Adobe Flat, Macreedy finds only a burned out house, a deep well and wildflowers growing in the dirt. Returning to town, Trimble rams Macreedy off the road, then harasses him for being a "road hog." Macreedy decides to leave but is unable to get transportation to the next town and finds that the train will not come until the next morning. After enduring comments of racial bigotry relating to Kumoko, Macreedy is convinced that Smith is trying to kill him and attempts to telephone the police, but Pete will not help him. The doc offers Macreedy his hearse for escape, but it has been tampered with and will not start. After trying to telegraph the police, Macreedy visits the café, where Coley goads him with more bigoted slurs. Macreedy downs Coley with judo, then accuses Smith of murdering Kumoko; he is convinced that the wildflowers hide something buried at Adobe Flat. Macreedy reveals that Kumoko's son Joe died as a result of saving his life in Italy during the war, earning a medal that Macreedy is bringing to his father. Doc and Pete then confess that Kumoko leased Adobe Flat from Smith under false pretenses of available water. Kumoko, despite being cheated, dug the deep well, enraging Smith. Smith is further angered after being turned down by the Marines and after getting drunk, decides to "scare the Jap" along with Coley, Pete, Hector and Sam, the café owner. The incident gets out of hand and Kumoko is killed. Pete then calls Liz and asks her help in getting Macreedy out of town. Liz drives him out of town into the hands of Smith. Smith shoots Liz to silence her, then turns the rifle on Macreedy. Macreedy creates a Molotov cocktail with jeep gas, his necktie and a glass bottle. He hurls the bottle at Smith, catching him on fire. Returning to town with Smith, Macreedy finds the other four witnesses locked up in a cell. The next morning, the police escort the prisoners away as the Streamliner pulls in. Macreedy, after hearing pleas from Doc, gives him the medal awarded to Kumoko's son Joe. The conductor comments that the excitement must be the reason that the train stopped here for the first time in four years. Macreedy comments "second," then boards the train.

Today we learned that Lori's cancer has developed another

metastatic lesion in the brain,

It was surreal, scary, and intimidating.

It is a 6 x 6 mm lesion that has grown in 90 days.

Translation, she has a very aggressive cancer that is trying to kill her and the iniparib and irinotecan that worked the first time is no longer working.

We are already looking at other clinical trials.

This is a bad blow.

There is no good spin to put on it.

I am delaying my return to Texas for a few days.

Tomorrow we will be at John Hopkins.

We need a better treatment.

This week really was not great one.

I had an identity theft issue that caused me to change my cell phone number of 10 years.

My yellow lab, Elle, the last of my four labs is going down hill 

from cancer.

I am feeling a bit overwhelmed.

I will figure this out. 

I will not let Lori lose to this disease.

I will not have a "bad day at black rock".

Not without a fight.