Saturday, January 30, 2010

James Mannett- A patients tale of dealing through INSURANCE HELL with his cancer. A great article and link with further information

This article is from MSN and I believe from the symptoms, this individual has CARCINOID............what do you think? Lives in a travel van!

Here is the link
http://articles.moneycentral.msn.com/Insurance/InsureYourHealth/battling-the-system-a-patients-tale.aspx?page=1

Here is the story.....pay attencion to the cancer symptoms......CARCINOID, MID GUT, I THINK!?

Battling the system: A patient's tale    


A cancer patient has saved thousands of dollars by tracking his bills, pleading his case and working the phones, demonstrating how to be a smart medical consumer.

[Related content: insurance, health insurance, health care, insurance companies, bills]

By The Wall Street Journal

James Mannett rarely thought about medical bills or insurance during 41 years of near-perfect health. Then he got cancer and became an expert.
Mannett was a fitness buff during his decades as a sales executive for General Electric and other companies. He owned a four-bedroom home in Southern California's tony Laguna Niguel, three cars and a Cessna plane that he flew for fun. After moving to Phoenix, he quit GE in early 2004 and used his savings to get into real-estate investment.

The next year, he was diagnosed with a rare, aggressive form of cancer that affected his small intestine and liver. Mannett, now 45, has so far had six surgeries and dozens of pricey lab tests and imaging scans. He's been to three hospitals and seen experts at several more. He estimates that his treatment so far has cost around $600,000, including travel and other expenses, with about $100,000 of that coming from his own pocket. Mannett, who now lives in a recreational vehicle and is supported mainly by federal disability benefits, continues to receive periodic chemotherapy to contain the cancer in his liver.

.The ordeal has given Mannett an education on navigating the financial straits of being treated for a major disease. It's an experience that can provide lessons for all of us about how to defend our own interests, even when we're at our most vulnerable. The bottom line: Smart medical consumers can save money if they track their bills as closely as they monitor their health.

For instance:
•When his insurer disputed some doctors' bills, Mannett got both parties together on a conference call to work out a compromise.

Fighting a claim denial

•By getting acquainted with a caseworker at his insurance company, he learned how to negotiate lower fees from surgeons before an operation took place.

•And by becoming friendly with financial clerks at doctors' offices, he has been able to secure discounts on some services.

Mannett has cajoled and pleaded his way to more-affordable treatment.

"Unless you go through something like this, you don't understand this stuff," says Mannett, whose computer contains dozens of his appeal and complaint letters about health care charges and coverage decisions. Before, "I just assumed that when you have insurance and you have a bill, they pay it," he says.
What he didn't notice about his insurance

After becoming self-employed in 2004, Mannett decided he needed health insurance. He chose a policy from Assurant that an agent said would cover all his expenses after he met an annual deductible of $4,950. Mannett, who had never bought his own insurance before, says he didn't notice that the plan included an additional $500 annual deductible for seeing doctors out of the insurer's network, or that its payments for such doctors would add up to only 80% of what Assurant deemed customary charges, not the actual billed amount.
In September 2005, Mannett felt a sharp pain in his abdomen. At the emergency room of St. Joseph's Hospital and Medical Center in Phoenix, a scan revealed a 5-centimeter tumor on his small intestine, and three tennis-ball-size tumors in his liver. The doctor told him he likely had only two years to live.

James Mannett has cajoled and pleaded his way to more-affordable treatment.

"It was very surreal. I couldn't believe I was hearing what I was hearing," says Mannett.

Doctors removed the tumor on his small intestine and a third of his colon. He went home a week later, accompanied by his mother and a cousin, a nurse, who had come to care for him.
Insurance company demands proof

As Mannett recovered, the bills stacked up. Assurant wasn't making any payments, he says. Instead, the insurer demanded from him the names and addresses of every doctor he'd seen for the previous five years, so it could verify that he hadn't concealed his cancer when he bought the policy. The investigation dragged on for months until, according to Mannett, he called the insurer and warned that the next contact would be from his lawyer. Soon after, he says, Assurant paid the hospital more than $29,000, as well as several other bills.

Assurant said it couldn't comment on Mannett's case due to privacy concerns.

Still, Mannett spent more out of pocket than he expected. Beyond his deductible, he owed several hundred dollars to some doctors who charged more than his insurer paid. He hadn't realized that even though the hospital was in his insurer's medical-provider network, some physicians working there were not.
In a statement, St. Joseph's said, "We have been working hard to provide additional information to patients to try and make our charges (and how people pay for them) more understandable."

A move that saved thousands


Mannett spent the next few months seeking doctors' opinions about how to treat the cancer in his liver. During this time, he also became familiar with the intricacies of the medical billing system:
Before writing any checks, he double-checked calculations on his insurer's explanations of benefits.

He also learned that, before Assurant would pay for expensive medication to control his digestive problems and other symptoms, he needed to obtain letters from his doctors explaining the need for the drug and pre-authorization from the insurer.
He says he found a helpful caseworker at Assurant, whom he began consulting about coverage.

In early 2006, Mannett settled on a dramatic surgical procedure at Cedars-Sinai Medical Center in Los Angeles. The surgeon would remove half of his diseased liver, hoping the organ would regenerate itself.

On the advice of the insurance caseworker, Mannett got the offices of the Cedars oncologist and surgeon, who weren't in the insurer's network, to agree in advance to accept Assurant's usual rate as their full payment. He believes the move saved him thousands of dollars.
More from MSN Money and The Wall Street Journal

.Surprise charges roll in

But when Mannett awoke in the recovery room, he learned his liver had proved too damaged for the surgery. The incision then became infected and had to be reopened and cleaned. He went home a week later, and a nurse came regularly to dress the open wound.

Then the bills started arriving. Mannett says he was surprised to learn that his agreements with the oncologist's and surgeon's offices didn't include the cost of imaging scans and lab exams.

When his head cleared between doses of painkillers, he convened three-way conference calls among those doctors' billers and his insurer to hash out some disputed fees. He also got a few charges reduced by appealing to a friendly staffer in one of the billing offices. And he wrote letters asking for other charges to be waived because of "severe financial hardship." Mannett estimates his efforts saved him more than $10,000 on the cost of the scans and lab exams.

Cedars-Sinai said it couldn't comment about Mannett because of privacy laws. Generally, the hospital has a variety of programs to help patients in financial need, it said.
A risky procedure, a personal plea
Once his surgical wound healed, Mannett decided on a risky procedure that would pump chemotherapy drugs directly into his liver. The goal was to blast the cancer, but it risked destroying Mannett's liver or causing a heart attack from the shock. Aubrey Palestrant, an interventional radiologist in Phoenix, agreed to do the surgery, which would have to be performed more than once.

Desperate to get a treatment that he figured was his last chance to survive, Mannett chose to not raise the billing issues in advance with Palestrant, who wasn't in Assurant's network. After two rounds of treatment in 2006, Mannett was told that all of his visible tumors appeared dead or dying, though the cancer was likely to reappear. Since then, he has had two more chemo treatments, for a total of four.
Fighting a claim denial
Later in 2006, he got a bill from the radiologist's office that said he owed nearly $8,200 after insurance payments of about $1,100. Additional bills followed. A financial-hardship letter to the doctor's office didn't win a discount.
Mannett says he then called Palestrant personally to plead his case and the doctor agreed to accept the insurer's rate as his full payment, forgiving Mannett's portion. Relieved and grateful, Mannett says he choked back tears.
Palestrant didn't return calls seeking comment.
This article was reported by Anna Wilde Matthews for The Wall Street Journal.






Published Jan. 11, 2010

Thursday, January 28, 2010

MY PRRT RESULTS VIA SCAN PRESENTATION (INCLUDING KIDNEY FUNCTION RESULTS)- The SCANS ARE ON A LINK BELOW- (also, click this title and be sent to scan link!) TELL ME WHAT YOU THINK? (ALSO INCLUDED IS COST COMPARISION BETWEEN PRRT AND BEST STANDARD OF CARE FOR ADVANCED UN- SECTABLE DISEASE)




My PRRT results in an slide show presentation is presented below.....!

When I understand how to post this on the blog picture by picture, I will do it, but for the interim, please click the web link to see the results of my PRRT lu 177 therapy at Bad Berka Clinic which started May 2009 with the second treatment in Sept 2009. I have only done 2 - TWO- treatments and as shown in the presentation, the results have been amazing!

I underwent a scan on January 2010 to define whether I would need additional therapy and Dr Richard Baum, a brilliant, straight shooting MD which I have had the pleasure to leave my life in his hands, has decided to wait on further treatment due to the excellent results so far. Although I continue to have lesions in the body, LU-177 continues to work long after the therapy (2 years sometimes) so he would rather wait and see what happens in my next set of scans, scheduled for Oct 2010! This means, aside from blood tests and visits to my local Oncologists, and Neurologists, I WILL NOT NEED ADDITIONAL TREATMENTS, INJECTIONS, SCANS, MRI'S, ETC.....for over 6 months!
THIS IS THE LONGEST PERIOD OF TIME I WILL HAVE GONE WITHOUT THERPAY, SCANS, ETC SINCE JUNE 2004!!!!!!!!!!

MY TUMOR "BURDEN" IS NOW WHERE IT WAS AS OF JUNE 2004 WHERE I HAD 2 LESIONS.....

TO THE READERS OF THIS BLOG, AND TO THOSE WHO ARE ATTEMPTING TO FIND THE RIGHT TREATMENT FOR THEIR NEVERENDING NIGHTMARE OF A DISEASE CALLED NEUROENDOCRINE CARCINOMA, YOU MUST INVESTIGATE PRRT AS ONE OF THE OPTIONS FOR YOUR DISEASE. IT IS THE ONLY TREATMENT/THERAPY SPECIFICALLY LABELED FOR CARCINOID/NEUROENDOCRINE CARCINOMA!

<this is the PRRT IV machine used for the therapy-simple!

HOWEVER, IN THIS COUNTRY, AND IN CANADA (WHY FOLLOW THE FDA CANADA?!?!?) IT IS NOT AVAIABLE. FORTUNATELY, IN EUROPRE, AUTRALIA, NEW ZEALAND AND OTHER COUNTRIES, THE TREATMENTS IS AVAIALABLE AND MANY USA PATIENTS ARE GOING FOR LIFE EXTENDING AND SAVING TREATMENTS WHCIH THEY CAN NOT GET IN THIS COUNTRY.

ANOTHER "HURDLE" IS MOST USA MD'S ARE UNAWARE OF THIS THERAPY OR WORSE ARE NOT AN ADVOCATE OF IT.......WITH DRUG REPS, ITS TOUGH TO SEE A THERAPY AT TIMES! FOR THE READERS, THE REASON WE DO NOT HAVE IT IN THIS COUNTRY IS A MYSTERY, BUT IT IS NOT DUE TO THE FACT IT IS UNSAFE OR DOES NOT WORK! IT IS MORE COMPLEX THAN THAT AND ONE WHICH IS AT THE HEART OF OURT MEDICAL AND HEALTH CARE SYSTEM$-- I BELIEVE.

DUE TO THE GIFT OF THE INTERNET, ADVOCATES SUCH AS THE SINGAPORE CNETS CARCINOID ORGANIZATION WHO INVITED DR RICHARD BAUM OF BAD BERKA CLINIC AND RECORDED THE PRESENTATION, AND THEN POSTED IT ON THE INTERNET.

I WAS FORTUNATE ENOUGH TO FIND IT (PLAIN LUCK and help from above!), I FOLLOWED UP AND STARTED COMMUNICATING WITH DR BAUM DIRECTLY, ABOUT MY CASE.
THREE MONTHS LATER I WAS IN GERMANY AND CHANGING MY LIFE!

BELOW IS THE LINK TO MY SCANS AS DEVELOPED FOR MY CASE BY BAD BERKA.
IT ALSO INCLUDES MY KIDNEY FUNCTION NUMBERS FOR TER & GFR  DEMONSTRATING  DRAMATIC IMPROVEMENT IN KIDNEY PERFORMANCE, SINCE THE THERAPY!
KEY LEARNING for MD's: PRRT (LU177 at least) IS NOT NEPHRO-TOXIC AND SHOULD NOT BE A LIMITATION TO YOUR REVIEW OF THIS THERAPY IN COMBATING THIS DISEASE.
Bad Berka Hospital room

>BELOW IS THE LINK TO 12 PICTURES WHICH TELL THE STORY OF MY DISEASE w/PRRT! 
Its a ACROBAT LINK which I am sharing with you SEE & LEARN and PRINT OUT and TAKE W/ YOU to your MD to show and talk this therapy option for you and YOUR DISEASE....

PRRT, LU177, 2 rounds! YOU CAN DO IT ALSO! 
Protect yourself and get CUTTING EDGE SYSTEMIC THERAPY, not available in this country...YOU, YOU HAVE TO DO IT YOURSELF BUT IT CAN BE DONE:

SCAN LINK: this is acrobat v#9
if you do not have it upload this https://acrobat.com/#l


https://acrobat.com/?i=Fo39IhTnJsMbCPJBpOLdRw



KIDNEY FUNCTION- IMPROVEMENTS
Kidney Function Tests Dates                                              1/18/2009   9/14/2009   5/18/2009


Tublar Extraction Rate- TER 277 ml/min                              202/77%     147/ 54%    97/ 35%

Renal Scinitigraphy Tc 99M MAG3 192 ml/mln  (lower limit)     105%            77%            51%


Glomerular Filtration Rate GFR 95 ml/min                            56/ 59%    53/ 56%   41/ 43%

Tc-99M DTPA     67 ml/min  (lower limit)                                            83%          79%         62%

^Note- to move the slides use the arrows, and to make the picture larger use the slide in the middle to see data in more detail. BTW, the large black areas on the right hand side of some of the scans are the kidney and the spleen which is normal uptake, NOT CANCER!  

Pay attention to the liver reductions and the mid belly mets reductions! The belly mets was feeding off the small intestines and would have eventually killed  the organ. It used to be inoperable. I wonder if it can be re-sected now as it is down from 6,8cm to 3cm? 
The liver was covered over 70% with lesions, and not have one large lesion and 2 very tiny ones which can not  been seen. These lesions could be removed, assuming no more PRRT for the time being, with RFA or resection very easily!
IF YOU HAVE ANY QUESTIONS REGARDING THIS, OR ADDITIONAL INPUT, YOU CAN WRITE ME AT: mailto:SMM2367@GMAIL.COM

I WOULD ALSO BE GLAD TO TALK BY PHONE TO REVIEW FURTHER when we write we can trade #'s..




TO NOTE, FOR THOSE THAT HAVE NOTED TO BE SKEPTICAL ABOUT THIS/MY THERAPY,
1) THESE RESULTS ARE AFTER 2 PRRT LU177 TREATMENTS- NOT 4, 5 OR 6 THERAPIES (WHICH CAN BE DONE BTW).

2) I HAVE NOT "DOCTORED THE SCANS", "WHAT YOU SEE IS WHAT I HAVE!"

3) FOR THOSE THAT MAY ASK "WHAT IF THE TUMORS DON'T HAVE RECEPTORS?" "AND THEREFOR WON'T SHOW UP ON THE PET WGA68"? 
WELL, THE SCAN IS DONE WITH A CT SCAN AND FUSED, AS YOU CAN SEE, AND COMPARED TO SEE IF ADDITIONAL LESIONS APPEAR, AND DO NOT LIGHT UP (NOTE THE BELLY METS which is shown via a CT scan).
IN ADDITION, BAD BERKA ALSO PERFORMS A PET W FDG SCAN, WHICH LOOKS AT GLUCOSE UPTAKE AND COMPARES AGAINST THE GA68 UPTAKE FOR "MISMATCH". 
IN MY CASE, NONE WERE FOUND. ALL TUMORS THAT "LIT UP", MATCHED UP AGAINST THE FDG SCAN! 
Net, receptor tumors=all tumors! This is really becomes a 360 view of your disease, and one that NOT ONE CLINIC in THE USA has the ability to perform at the current time!

4) I HAVE UNDERGONE 3 PRIOR SURGERIES, INCLUDING MY RIGHT KIDNEY REMOVAL- (BTW_ DO NOT DO THIS IF YOU CAN AVOID IT---GO TO A HOSPITAL THAT KNOWS HOW TO DO "NEPHRON SPARING SURGERY)"! 
I ALSO DID THE INITIAL SURGERY IN COSTA RICA-RFA AND A  LYMP NODE REMOVAL IN CIME SAN JOSE, COSTA RICA......(BTW- AVOID DIFFICULT SURGERIES IN THIRD WORLD COUNTRIES IF YOU CAN!)

5) I HAVE UNDERGONE 2 CLINICAL TRIALS- i) RAD001 5MG DAILY (AFFINITOR W/LAR30) AND ii) PAZOPANIB 10MG ( W LAR 30). 
BOTH OF THESE DRUGS HELD THE TUMORS AT BAY FOR A SHORT TIME---RAD MUCH LONGER-- HOWEVER, THE TUMORS RETURNED AND STARTED GROWING MORE AGGRESSIVELY AFTER. 

PAZOPANIB HAD SOME VERY STRONG SIDE AFFECTS.

MY TOTAL TUMOR LOAD, BEFORE AND AFTER I STARTED THE TRIALS, WAS MUCH GREATER AFTER I FINISHED THE TRIALS......10 to 20X MORE than when I started!

KEY LEARNING-  when in a trial, ASK TO LOOK AT THE SCANS IN DETAIL, ASK FOR THE TUMOR LOAD AND MEASUREMENTS FOR ALL THE TUMORS AFTER EACH SCAN AND DEFINE NEW TUMORS......IF YOU CAN GET A DISK COPY, GET A SECOND OPINION THAT WOULD ALSO BE HELPFUL......!

FINALLY, PLEASE SEE THE LINK ON THE BLOG REGARDING VEGF INHIBITORS (ON THE LEFT HAND SIDE). THERE IS ONE EXPLAINING THE DRUGS AND 2 ADDITIONAL CONCERNING AN IMPORTANT AND CRITICAL ISSUE WHICH IS BEING STUDIED RELATIVE TO VEGF DRUGS MAKING TUMORS MORE AGGRESSIVE, AND MAY CAUSE DISTANT METASTASIS! 
THIS IS THOUGH MOUSE STUDIES ONLY, HOWEVER; IN MY CASE, THIS MAY HAVE BEEN THE CASE WITH PAZOPANIB AND OR RAD. THERE SHOULD HAVE BEEN MORE STUDIES MADE PRIOR TO ALLOWING THESE DRUGS ON THE MARKET i BELIEVE.

ALSO, WITH RAD, MY BELLY METS GREW DURING THE TRIAL TO THE POINT WHEN I CAME OFF THE DRUG IT WAS INOPERABLE, AND I WAS DENIED AN OPERATION BY THE MDACC SURGEON.....WHEN I STARTED THE TRIAL, THE LESION WAS SMALL AND COULD HAVE BEEN REMOVED FAIRLY EASILY! IT THEN BECAME A LIFE THREATENING LESION WHICH COULD HAVE ENDED MY LIFE......(NOT MY RECO ABOVE ON CT DATA)

SO, AS A FOOTNOTE TO ANYONE THAT MAY THINK VEGF INHIBITORS ARE "THE BEST DRUGS FOR NET TUMORS" (AS NOTED BY ONE MD WHO WROTE TO A PATIENT OF HIS AND READER OF MY BLOG- BULL SHIT!!!!!)! 

THEY DO PLAY A PART IN HOLDING OFF THE TUMORS, FOR A SHORT PERIOD OF TIME, HOWEVER, IT COMES WITH A COST (TREMENDOUSLY EXPENSIIVE BTW), AND THEY ARE NOWHERE NEAR AS EFFECTIVE AS PRRT! I CAN SHOW ANYONE MY SCANS, DATA, BEFORE AND AFTER, ETC, IF ONE NEEDS FURTHER PROOF...... HOWEVER, WHY BRING FACTS AND DATA INTO THIS DISCUSSION! :)

FOLKS, THE AMAZING STORY IN THIS JOURNEY-- BOTH DRUGS RAD AND PAZOPANIB HAVE BEEN APPROVED BY THE FDA AND LABELED FOR KIDNEY CANCER! 

HOWEVER, PRRT, THE MOST EFFECTIVE AND ONE OF ONLY LABELLED THERAPIES (SANDO BEING THE OTHER)FOR CARCINOID/NEUROENDOCRINE TUMORS,  AVAILABLE IN MOST OF THE WORLD, IS NOT APPROVED AND UNAVAILABLE IN THE USA (EXCEPT FOR INDIUM-111, A VERY LOW DOSE AGENT, OR OTHERS ON A EXPERIMENTAL BASIS). 
THERE IS NOT ONE CARCINOID FOUNDATION OR GROUP OR INTEREST GROUP TRYING TO CHANGE or CHALLENGE THIS IN THE USA!......(TO NOTE, CARING FOR CARCINOID FOUNDATION UPLOADED A PRRT VIDEO ON UTUBE AND INTERVIEW DR BAUM and I ERTAINLY APPRECIATE THEIR EFFORTS! ).

THE MAJOR RADIOACTIVE AGENTS OF Y90 AND LU177 IN PRRT, ARE NOT AVAILABLE HERE, EXCEPT IN STUDIES.....WHICH BTW, HAVE BEEN USED FOR
DECADE OR MOREIN OTHER PARTS IF THE "G8 WORLD".....

MUCH, MUCH, MUCH LONGER THAN PAZOPANOIB AND RAD HAD BEFORE, THESE DRUGS WERE APPROVED LAST YEAR BY THE FDA! 
WHY, O WHY IS THIS THE CA$E??$$$$$$$$$$$

EVEN WITH THE CONCERN OF THE LATTER DRUGS MAKING THE TUMORS MORE AGGRESSIVE! EVEN WITH THESE RISKS, THESE VEGF DRUGS ARE APPROVED; HOWEVER, PRRT THERAPY, WITH 10 TO 15 YEARS OF ACTUAL PATIENT TREATMENT AND RESULTS IN EUROPE, WITH EXCELLENT RESULTS, VERY LOW SIDE AFFECTS, ARE NOT CURRENTLY APPROVED IN THIS COUNTRY.........!  THE WROSE THING IS ITS NOT COVERED BY INSURANCE. TO BE HONEST, I WOULD RATHER GO TO EUROPE, WITH THE EXPERIENCE, AND THE COST BEING 10X (LESS) THAN WHEN IT GETS APPFROVED HERE, WHY DOES INSURANCE NOT COVER THIS? (EXCEPT IN MINOR APPEAL CASES!) THIS WOULD BE THE ANSWER, INSURANCE COVER THE TREATMENT, EVEN AT 70%, IT WOULD BE MANAGABLE AT PRRT PRICES......
6 MONTHS

I HAVE DONE PRICE COMPARISIONS IN THE PAST, HERE IS A RECAP:


1) USA- AVASTIN, LAR MONTHLY (AVASTIN WEEKLY) AND OS-CANS 7 CT SCANS EVERY 4-6 MONTHS, BL0OD, MD;S THE COST MONTHLY, OUTPATIENT BASIS (WITHOUT INSURANCE DEDUCTS)
  • THE COST WOULD BE $250,000 TO $300,000
  • RESULTS - BEST- STABILITY FOR ONE YEAR, AT BEST, A NUMBER OF HARD SIDE AFFECTS- HBP, FATIGUE PAIN, BLOOD, SOME STUDY CONCERNS ON METS (SEE LINKS ON LEFT)!

2) PRRT IN EUROPE- INCLUDE Y90 OR LU177, PET GA68 AND CT SCANS, KIDNEY SCANS, BLOOD, PRRT THERPAY, 6 DAYS IN HOSPITAL ROOM, DOCTOR FEES AND OTHER HOSPITAL COSTS AND SCANS (HEART AND LIVR ULTRA SOUNDS FOR EXAMPLE)- SAY THREE TREATMENTS AND ADDITIONAL SCANS IN ONE YEAR (LESS THAN MINE (FOR EXAMPLE, I ONLY HAD 2 TREATMENTS AND ONE ADDTIONAL SCAN IN WHAT WILL BE OVER ONE YEAR 17 MONTHS!):

  • THE COST ABOVE WOULD BE ~$50,000 FOR THE YEAR
  • RESULTS- BEST- (MOST PROBABLY) PARTIAL OR MINOR REIMSSION, STABLE DISEASE, FOR START OF THERAPY FOR 40 MONTHS (PER ROTTERDAM STUDY LU177) (RANGE 10 TO 100 MONTHS),
  • BAD BERKA HOWEVER HAS NOTED IT IS GETTING 58 MONTHS, WITH MIXED THERAPIES (Y90 AND LU177). (RANGE 10 TO 118 MONTHS!)
  • SIDE AFFECTS- FATIGUE, BLOOD, KIDNEY (THOUGH MINE IMPROVED!), THIS IS PRINICPALLY Y90 RELATED AND INSUFFICIENT PRIOR AND PRRT THERPAY HYDRATION.

SO TO COMPARE APPLES TO APPLE- ASSUME 3 YEARS  OF STABILITY - NOT PROBABLE IN AVASTIN BUT FOR SAKE OF ARGUMENT:

 1) AVASTIN/PRRT/SCANS/TESTS/MD, :
TOTAL OVER 3 YEARS $700,000- $800.000 3 YEARS OF THERAPY (DOES NOT INCLUDE HMO DECUCTIONS WHICH COULD REDUCE THIS BY %)

2) PRRT THERAPY, 3 THERAPIES, 40 MONTHS, NO LAR AFTER THERAPY, CONTINUE SCANS EVERY 6 MONTHS- $50,000 1ST YEAR AND THEN $7500 NEXT 2 YEARS PLUS BLOOD TESTS IN USA OF $7500, TOTAL COST FOR 3 YEARS & TRAVEL LODGING:
TOTAL OVER 3 YEARS $75,000-$80,000



THINGS YOU LEARN ON AN AIRPLANE 
MY SEAT MATE ON THE PLANE FLYING BACK FROM GERMANY TOLD ME A GREAT STORY, AND ONE WHICH MAY EXPLAIN WHY THIS EFFECTIVE AND INEXPENSIVE PRRT TREATMENT IS NOT APPROVED IN THIS COUNTRY?

SHE NOTED THAT DRUG COMPANIES "LEARNED THEIR LESSON" WITH THE POLIO VACCINE DRUG DISCOVERY--- ONE INJECTION OR SUGAR PILL AND THAT WAS IT, NO MORE POLIO FOR LIFE.....! HOWEVER, FOR THE PHARMACY COMPANY, THIS MEANS NO MORE SPENDING $$.....!!!!!

SO GUESS WHAT? CURRENTLY WHAT WE HAVE FOR HIV....? WE HAVE A LIFETIME WORTH OF DRUG COCKTAILS, TAKEN DAILY, AT A TREMENDOUS COST, DAY AFTER DAY, WHICH MEANS YOU  MAY GET  STABILIZED DISEASE, BUT NEVER CURED......ITS THE SAME FOR CANCER DRUGS GENERALLY!

WHY IS PRRT NOT AVAILABLE IN THIS COUNTRY?
WRITE ME OFF LINE AND I WILL GIVE YOU MY THOUGHTS AND WHAT YOU CAN DO ABOUT IT!

HOW TO SAVE YOUR LIFE:

NOTE- IF YOU WANT TO CONTACT DR BAUM ABOUT YOUR CASE AND POSSIBLE GA68 SCAN & PRRT OPTIONS? 
HIS EMAIL ADDRESS IS:
Zentralklinik Bad Berka GmbH
Robert-Koch-Allee 999437 Bad Berka
Telephone: +49 36458 53 200Telefax: +49 36458 53523 

Physician Information

Prof. Dr. Medicine: Richard P. BaumDept. of Nuclear Medicine – Center for PET/CT

Zentralklinik Bad Berka 99437 Bad Berka, Germany
Tel: +49 (364) 585-2200 FAX: +49 (364) 585-3515
EMAIL: r.baum.pet@zentralklinik-bad-berka.de
Web site: http://www.zentralklinik-bad-berka.de/ (in German; English language web site under development!)

Wednesday, January 20, 2010

BAD BERKA GERMANY- I AM LEAVING WITHOUT TREATMENT AND WITH ONLY 2 SMALL LESIONS IN MY BODY!

I am ready to leave Bad Berka clinic on Wednesday, Jan 21, 2010!




I have done 3 days of testing, from the heart, liver, scans, blood, name it I have done it, to determine the status of my cancer. Recall, I walked into Dr Richard Baum's office in May 2009 a very sick and dying man! With advanced neuroendocrine carcinoma cancer, a failing kidney, edema, 100 mg of Oxycontin to control the pain, looking like father death with my previous VEGF drug trial,,,,,,I was in bad shape and not far from dying!



THIS IS WHAT I LOOKED LIKE IN MAY 2009 (and insides) AFTER 1ST THERAPY, W/DR. BAUM right
THIS IS WHAT I LOOK LIKE IN DEC 2010! HANDSOME SOB I AM!

Here are the results from the scans, AFTER 2 PRRT (LU177) TREATMENTS AT BAD BERKA
This is a email note to one of my carcinoid oncologists in Columbus Ohio (I also will send to Dr Nuess who is my Cinci based oncologist) (I WILL POST THE SCANS WHEN I GET HOME FOR ALL TO SEE!)




DURING 2ND THERAPY, SEPT 2009















EMAIL FROM DR BAUM TO DR SHAH, JAN 2010 AFTER SCAN RESULTS:
Von: PET Baum, Richard [ZBB]
Gesendet: Dienstag, 19. Januar 2010 23:33
An: 'manish.shah@osumc.edu'; 'daria.arbogast@osumc.edu'

Betreff: Patient Steve Murrah
Dear Manisha,
attached please find a short summary of the re-staging results of S.M. 4 months after the 2nd PRRT.
He presents with one of the best responses I have ever seen after Lutetium-177 DOTA-TOC.

In addition, the function of his single kidney (GFR and tubular extraction rate, TER) has significantly improved (!).

Blood counts are within normal range.
I therefore decided not to administer another cycle of PRRT but to perform re-staging in October 2010.
Best regards,
Richard P. Baum, MD, PhD

Professor Dr. Richard P. Baum
Chairman and Clinical Director,
Dept. of Nuclear Medicine / Center for PET/CT
Zentralklinik Bad Berka
99437 Bad Berka, Germany


THIS IS THE CLINICAL LETTER FROM DR BAUM

P a t i e n t N a m e : S t e v e M     Date of Birth: July 19XX, USA
Admitted from: January 17-20 2010 Patient ID: 743XXXX

EPICRISIS, ASSESSMENT AND PLAN

Re-staging 4 months after the second peptide receptor radionuclide therapy (PRRT) of
the previously progressive, metastasized neuroendocrine carcinoma showed
excellent therapy response with further regression of the metastatic lesions by Ga-68
DOTA-TOC receptor PET/CT (PERCIST criteria). '

There is now only one single receptor positive liver metastasis in segment S4a left which regressed from a maximum SUV of 39.3 to now 26.9. Also the abdominal lymph node lesions regressed (from 41.6 SUV down to 11.2) and the previously seen bone metastases disappeared completely.
There are no new tumor lesions.!

Renal studies show a further significant functional improvement (sic!) of the single left
kidney: Compared to the baseline values before PRRT, GFR improved by 16 % (now
59% (66 ml/min), TER improved by 39% (now 74 % up from 35 %), which is now in the
normal range.

No hematologic toxicity (normal blood counts) after PRRT.

Clinically, the patient is doing fine.

RECOMMENDATIONS

The following controls (over the next months) are necessary:
• Hb, RBC, WBC, PLT: every 2 months
• Kidney function (creatinine, BUN), and electrolytes at bimonthly intervals
• Liver function (GGT, AP, GOT-ASAT, GPT-ALAT, bilirubin) bi-monthly

Next admission (re-staging) is planned for:

October 3, 2010.

"SOOOOO", AS THEY SAY IN GERMANY, I NOW HAVE 2 LESIONS, THAT ARE DETECTABLE IN MY BODY- ONE IN THE LIVER THAT IS LARGE, THE OTHER ONE IN THE BELLY, THAT USED TO BE TOO LARGE, AND COULD NOT BE OPERATED ON IN THE PAST, BUT NOW A VERY TUMOR....! THSI TUMOR WAS KILLING ME AS IT WAS FEEDING OFF THE SMALL INTESTINE AND WOULD HAVE KILLED OFF THE ORGAN DUE TO ROBBING BLOOD SUPPLY!

ITS HARD TO IMAGE, A FEW SHORT MONTHS AGO, WITH MY CURRENT SITUATION, AFTER GOING THROUGH SOME OF THE MOST UPDATED AND ADVANCED TREATMENT OPTIONS IN THE USA --3 SURGERIES, 2 CLINICAL TRIALS AND FAILING SLOWLY AND DYING!

THANK GOD FOR THE INTERNET, MY FRIEND BILL CLAXTON FROM THE SINGAPORE CNETS CHAPTER, WHICH INVITED DR BAUM TO SPEAK ON THE THERAPY AND SCANS, AND PUT IT ON THE NET FOR ALL TO SEE. HE THEN GAVE ME HIS EMAIL WHEN I EMAILED HIM UNDER DURESS!

AND FINALLY, THE BAD BERKA CLINIC, PRRT, AND DR RICHARD BAUM AND THEIR WONDERFUL STAFF OF DOCTORS THAT KNOW MORE ABOUT NEUROENDOCRINE TUMORS COLLECTIVELY, THEN ANYWHERE I HAVE BEEN.

FINALLY, THOSE PRAYERS AND ENCOUREAGMENT I RECEIVED FROM FAMILY, FRIENDS AND MANY "NET AND BLOG" FRIENDS I HAVE MET THROUGH THIS BLOG/INTERNET!

NEXT RETURN DATE- OCT 3, 2010-....I DIDN'T THINK I WOULD LIVE TO SEE ANOTHER OCTOBER BACK IN FEB 2009, MUCH LESS A RESTAGING DATE WITH A TUMOR LOAD LESS THAN IN 2003!

I WONDER IF IT'S "OCTOBERFEST" IN GERMANY AT THAT TIME!?

+***TO FIND OUT MORE ABOUT MY TREATMENT.....GO TO THIS LINK AND SEE BOTH PARTS (PART 1 AND 2) OF THE VIDEO WHICH CHANGED MY LIFE!****
http://www.youtube.com/user/renalcarcinoidguy



*BTW, EVER WONDER WHY THIS WONDERFUL TREATMENT- PRRT (LU177 and Y90) AND SCANNING (PET W/GA 68) IS NOT AVAILABLE IN THE USA?
I DO?!?!?*

Thursday, January 14, 2010

Alive and well.....well ALIVE! and going to Germany this week!

I will write more later but I am doing well, and headed to Germany this week for scans and tests with Dr Baum and Bad Berka in Germany this Friday and starting on Monday, Jan 18, 2010!
MY PAIN WE THINK WAS A HERNIA, MAYBE CONSTIPATION OR MAYBE DIVIRCULITIS (SIC)...BUT ITS GONE NOW AND I AM BACK....

I WENT TO HOUSTON AND TO COSTA RICA FOR SOME BUSINESS AND WILL POST SOME PICTURES FROM A FRIEND OF CR WHICH YOU HAVE TO SEE....ITS A BEAUTIFUL COUNTRY!


Please keep me in your prayers for NO TUMORS AND TUMOR REDUCTION...FOR THE FIRST TIME I AM WALKING IN AND FEELING LIKE I AM GOING TO GET GREAT NEWS WITH THE PRRT TREATMENT DUE TO THE NUMBERS I GOT LAST TIME.....THEY CAN TELL YOU WHAT UPTAKE I RECEIVED AFTER THE SECOND TREATMENT!

NO NEW TUMORS, AND TUMORS SHRINKING......THAT IS WHAT I NEED AND NO ADDITIONAL PRRT THERAPY UNTIL LATER....THAT IS WHAT MY "DREAM" IS LIKE,....OTHERS DREAM OF RETIREMENT, MONEY, CRUISES, ETC......

I DREAM OF A CLEAN PET GA68 & CAT SCANS AND BLOOD TESTS..........THAT IS MY LIFE!

LIFE CAN BE HELL TO SOME AND I AM IN THE MIDDLE OF IT BUT I HAVE DR BAUM AND BAD BERKA AND A GREAT TEAM OF MD IN TOWN- DR NUESS, ARLEEN, DR SHAH, DARIA AND DR NEACK...THEY HELP ME A LOT HERE ON THIS SIDE AND OVER,......

......AND BTW, I PAY FOR THIS OUT OF POCKET BECAUSE MY FRICKING INSURANCE, HUMANA INSURANCE, WILL DENY IT! WELCOME TO
"KEEP YOU HANDS OFF MY INSURANCE"....

WAKE UP PEOPLE!

Saturday, January 2, 2010

Jan 2 2010 IN PAIN!

PAIN IN STOMACH_ LOWER LEFT HAND SIDE, what does it mean?~


Today is Saturday, January 2, 2010 and I am on my third day of a low grade pain in the left side, bottom, of my stomach! It is the first time I've had a strange pain in my "cancer zone"......since PRRT!

I went to the MD on Dec 31 and she told me they would try anti constipation medicine- DUCOLAX as due to Oxy I am very constipated, which may cause my colon to be distended, and with the scar tissue, may cause the pain.  There is some relief when I move the bowels, so I PRAY THIS IS IT!

Option 2, Diverticulitis, which may be due to fact I have been eating nuts, and have had a similar type pain, though more intense, esp when constipated. So for that I got CIPRO and started taking it 2 days ago but still in pain.

If nothing works, by end of day today, I will call MD and get a MRI, which is NOT WHAT I WANT TO DO! I hate hospitals and especially one that does not know me, my rare disease, and all the problems I have had.....when I enter the hospital, and start going through my history, the PC template runs out of room and a siren goes off for the MD INTERNS to come see me and get involved and learn from this "freak of nature"!

I should charge like a side show in the circus! "come see the "renalcarcinoid man" "who is undergoing PRRT in Germany after undergoing 2 clinical trials and after undergoing 3 surgeries!" Come one come all....

I hope this pain goes away..,..pain and cancer go together.....now I am glad I have oxycontin because when I don't take it the pain get more intense. The issue with the pain, it hurt when  I breath in, or touch it or walk or push in the toilet, so its not intense on going pain, which is good, but pain and cancer

IS BAD.....!

Friday, December 25, 2009

Merry Christmas! Dec 25, 2009 AND TARP Funded Banks!



Merry Christmas!!! Dec 25, 2009!
"I am going to Avatar movie now, its 438pm"!

This is going to be like a Tweeter! Which BTW, I have no idea what that is about, other than you have 150 words and famous and people like me say things like "I am going to the bathroom now"! and it gets published on the net...... '



"I am out of bathroom and had a thought, where does the stuff go eventually"?




In any event, I am saying to all Merry Christmas! I hope Santa brought you what you wanted and the TARP (what does this mean anyway?) infested banks did not ring up too much credit on your credit cards! BAC is the worse and I have them for a mortgage...it took them 3 months to find my contract for the house, which when I fell behind, by mistake when I went to Germany, and they sent people to investigate if the house was occupied, they quoted the contract (and it cost me $40 every time someone would come by, park on the street and "investigate"! I think I ended up paying some of the TARP money back from these investigations.....

But they noted the contract at every turn, so when I asked for a copy, THEY COULD NOT FIND THE DAMN THING AND IT TOOK THEM MONTHS....THEY WOULD SEND ME LETTER THAT SAID "WE WILL MAIL IT TO YOU THIS WEEK"...THIS WAS BEGINNING OF NOV...I GOT IT LAST WEEK....!

BANK OF AMERICA!

FORGIVE ME LORD FOR I HAVE SINNED!