MY TREATMENTS
(more data on 2nd -4 blog entries 8/2008)
1) SURGERIES
> I HAVE UNDERGONE 3 PRIOR SURGERIES, INCLUDING MY RIGHT KIDNEY REMOVAL, RFA OF LIVER AND LYMPH NODE REMOVAL
(KEY LEARNING- DO NOT REMOVE THE ENTIRE KIDNEY, IF YOU CAN AVOID IT---
GO TO A HOSPITAL THAT KNOWS HOW TO DO "NEPHRON SPARING SURGERY". SEE LINKS FOR STUDY DATA. CLEVELAND CLINIC IS THE BEST!I have many posts on this surgery, goggle it in the blog to find MORE ABOUT IT!
>MY INITIAL SURGERY WAS PERFORMED IN COSTA RICA- A LYMP NODE REMOVAL IN CIMA Hospital in SAN JOSE, COSTA RICA......
(BTW- MY OPINION, TRY TO AVOID DIFFICULT SURGERIES IN DEVELOPING COUNTRIES, AND GET 2-3RD OPINIONS PRIOR TO SURGERY.)
2) CLINICAL TRIALS
1) RAD001 5MG DAILY (AFFINITOR, W/LAR30) 2/2005- 6/2007
2) PAZOPANIB 10MG ( W LAR 30) 9/2007- 2/2009
BOTH OF THESE DRUGS WORKED FOR ME INITALLY AND REDUCED and STABLIZED THE TUMORS FOR A TIME.--RAD MUCH LONGER.
HOWEVER, THE TUMORS CONTINUED TO GROW AFTER A WHILE,AND MAY HAVE GROWN AND SPREAD MORE AGGRESSIVELY AFTER I WAS TAKEN OFF THE THERAPY.
BOTH WERE GOOD, SHORT TERM OPTIONS (6-12 MONTHS) OPTIONS, IN MY OPINION.
3) SIDE AFFECTS
PAZOPANIB HAD SOME VERY STRONG SIDE AFFECTS ON ME, RAD VERY LITTLE.
MY TOTAL TUMOR LOAD, BEFORE AND AFTER I STARTED THE TRIALS, WAS GREATER AFTER I FINISHED THE TRIALS......more than when I started!
THE LINKS BELOW ARE RELATED TO POTENTIAL ISSUES WITH VEGF INHIBITORS AND SIDE EFFECTS.
HOWEVER, WHEN I STARTED THE THERAPIES, MY TUMORS SHRUNK, THE FIRST 3 TO 6 MONTH RANGE, THEN IT WAS STABLE FOR MONTHS. THE TUMORS STARTED TO REVERSE, THEREAFTER AND GROW.
KEY LEARNING- IF IN A TRIAL, WORK CLOSELY WITH THE MD AND THE NURSE. REQUEST TO SEE THE THE SCANS IN DETAIL. ASK FOR THE TUMOR MEASUREMENTS FOR ALL THE TUMORS AFTER EACH SCAN.
IF YOU CAN GET A DISK COPY OF THE SCAN, THAT WOULD ALSO BE HELPFUL......!
FINALLY, PLEASE SEE THE LINK ON THE BLOG REGARDING VEGF INHIBITORS (ON THE LEFT HAND SIDE). IT EXPLAINS THE DIFFERENT THERAPIES. (PAZONPANIB IS CLASSIFIED AS A VEGF DRUG.)
SOME ONCOLOGIST ARE COMBINING THESE DRUGS WITH OTHER THERAPIES (AVASTING W TEMEDOR/XELODA FOR EXAMPLE) AND SEEM TO WORK BETTER.)
>THERE IS A VERY DETAILED ARTICLE EXPLAINING THE NET DRUGS AND ITS ACTIVITIES ON THE BODY TO BELOW
THE LINKS BELOW ARE RELATED TO POTENTIAL ISSUES WITH VEGF INHIBITORS AND SIDE EFFECTS.
>RAD &VEGF DRUGS, THOUGH NOT LABELED FOR NETS, DO PLAY AN IMPORTANT PART IN HOLDING OFF THE TUMORS, FOR A PERIOD OF TIME, I BELIEVE, AND PER STUDY DATA (SO DO INTERFERON, TEMEDOR, XELODA AND OTHER CHEMOS)
.
HOWEVER, THESE TREATMENTS COME WITH A COST ( EXPENSIVE & SIDE EFFECTS).
BOTH VEGF DRUGS--- RAD AND PAZOPANIB ---HAVE BEEN APPROVED BY THE FDA AND LABELED FOR KIDNEY CANCER, AND ON THE MARKET NOW!
They are used "off label" for NET tumors.
They are used "off label" for NET tumors.
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CURRENT PRRT STATUS
>PRRT IS AVAILABLE IN MOST OF THE DEVELOPING WORLD, HOWEVER, IT IS NOT APPROVED AND UNAVAILABLE IN THE USA AND CANADA, (EXCEPT FOR INDIUM-111, A VERY LOW DOSE AGENT , HOWEVER, THE LATTER IS EFFECTIVE IN STABLIZING TUMORS IN SOME CASES.
>THE MAJOR RADIOACTIVE AGENTS IN Y90 AND LU177 IN PRRT, ARE NOT AVAILABLE HERE, EXCEPT IN STUDIES OR IN A LIVER EMBOMLIZATION PROCEDURE (SIR SPHERES Y90)....
>PRRT HAS A DECADE OR MORE OF ACTUAL TREATMENT DATA AROUND THE GLOBE.....
THE ESTIMATED COST NUMBERS BELOW ARE IMPRESSIVE, AND COULD BE AN AVENUE FOR APPEAL DATA-- IF INSURANCE COVERS THE TREATMENT, EVEN AT 70%, IT WOULD BE MANAGABLE AT PRRT PRICES IN EUROPE......!
THINGS YOU HEAR ON AN AIRPLANE !
>;PRRT RESULTS- STUDY AND TREATMENT DATA INDICATES ACTIVITY ON THE TUMOR LASTING MUCH LONGER THAN ANY AVAILABLE DRUG USED IN THE US AND CANADA TODAY (PAZOPANOIB, RAD AND OTHER VEGF DRUGS).
HOWEVER, RAD, VEGF DRUGS HAVE ALL BEEN APPROVED BY THE FDA - FOR USE IN OTHER CANCERS! THEY ARE USED OFF LABEL ON NET'S.
EVEN WITH THE CONCERN OF THE VEGF 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, LOW SIDE AFFECTS, AND A LOW COST STRUCTURE, IS NOT CURRENTLY APPROVED IN THIS COUNTRY OR CANADA!
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Cost Data
THE DIFFICULT PART RE: PRRT IS ITS NOT COVERED BY INSURANCE. ----------
BUT YOU CAN APPEAL TO YOUR INS COMPANY FOR COVERAGE. MANY PEOPLE ARE BEING TREATED AND COVERED BY INSURANCE IN THIS MANNER.
QUESTION---WHY WOULD INSURANCE NOT COVER THIS?- (EXCEPT IN SOME APPEAL CASES!) THE COMMON ANSWER IT IS NOT FDA APPROVED. HOWEVER, THE SAVINGS, ON A PROVEN THERAPY, TREMENDOUS!
PRRT IS NOT FDA APPROVED ( BUT RAD AND PAZOPANIB ARE).
THERAPY COST AND ACTIVITY COMPARISON
THE ESTIMATED COST NUMBERS BELOW ARE IMPRESSIVE, AND COULD BE AN AVENUE FOR APPEAL DATA-- IF INSURANCE COVERS THE TREATMENT, EVEN AT 70%, IT WOULD BE MANAGABLE AT PRRT PRICES IN EUROPE......!
I HAVE DONE PRICE COMPARISIONS IN THE PAST ON THIS BLOG, BUT HERE IS ANOTHER RECAP:
COST IN USA FOR ADVANCED TUMORS1) USA- AVASTIN, LAR 30 MONTHLY (AVASTIN BI-MONTHLY).
IMAGING- OSCANS & CAT SCANS EVERY 4-6 MONTHS, BL0OD WORK, MD;S
OUTPATIENT BASIS (WITHOUT INSURANCE DEDUCTS)
COST : $250,000 TO $300,000/yr, low end $150,000-$200,000/yr with HMO deductions and Non Cancer Hospital setting
>AVASTIN-- $10,000 MONTH
>LAR30 --$10,000 MONTH
> IMAGING, TUMOR MARKERS, MD -- $50-$75,000 YR
>RESULTS - TYPICAL (PER STUDY DATA) - STABLE, SOME PARTIAL REMISSION small%
>SIDE AFFECTS- HBP, FATIGUE PAIN, BLOOD, STOMACH PERFORATION
>DURATION- 50- 58 WEEKS
STUDY CONCERNS ON METS ABOVE
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 LIVER ULTRA SOUNDS)-
> 3 TREATMENTS & SCANS (NOTE- I ONLY HAD 2 TREATMENTS IN MORE THAN ONE YR)
PRRT COST: ~$50,000/yr
(3 treatments/scans/room/med/MD over 4 months apart!) (if 4 treatments add $12-17,000)
RESULTS- (PER PREVIOUS RESULTS)-
>%SMALL % COMPLETE, PARTIAL OR MINOR TUMOR REMISSION, MAJORITY WITH STABLE DISEASE
>DURATION ~40 to 58 MONTHS
(PER ROTTERDAM STUDY LU177. BAD BERKA HAS NOTED IT IS GETTING 58 MONTHS, WITH MIXED THERAPIES (Y90 AND LU177).
SIDE AFFECTS- FATIGUE, BLOOD, KIDNEY (THOUGH MINE IMPROVED!-- THIS IS GENERALLY Y90 RELATED-- DUE TO INSUFFICIENT PRIOR AND PRRT THERPAY HYDRATION.
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SUMMARY
"APPLES TO APPLE"- ASSUME 3 YEARS OF STABILITY - NOT PROBABLE IN VEGF OR OTHER AGENTS AVAILABLE, BUT FOR SAKE OF ARGUMENT:
1) AVASTIN/LA30 MONTHLY/SCANS/TESTS/MD :
TOTAL COST OVER 3 YEARS- $350,000 TO $750,000 -
COST DEPENDS WHERE TREATED- MOST EXPENSIVE- CANCER HOSPITAL
COST DEPENDS WHERE TREATED- MOST EXPENSIVE- CANCER HOSPITAL
NOTE- COST GENERALLY SAME FOR OTHER VEGF DRUGS, AND ADD IF ADDITIONAL DRUGS ARE INCLUDED
2) PRRT THERAPY/3 THERAPIES/ SCANS/ MD/ HOSPITAL- 40 MONTHS, NO MORE LAR AFTER THERAPY, CONTINUE SCANS EVERY 6 MONTHS:
TOTAL COST OVER 3 YEARS-$70.000 to $90,000
> $50--$60,000 1ST YEAR
> $10,000 NEXT 2 YEARS SCANS TEST ETC
> $10-20,000 BLOOD TESTS DONE IN USA OF FOR 3 YEARS & TRAVEL LODGING TO EUROPE.
NET $ SAVINGS: PRRT 3 YRS: $280,000 TO $660.000
*ASSUMES NO MORE LAR INJECTIONS AFTER 1ST THERAPY. IF LAR GIVEN, ADD $10,000 A MONTH IN US, UNLESS YOU GET IT IN EUROPE/CANADA, ADD $3000 A MONTH.
FINAL NOTE: PRESIDENT OBAMA, CONGRESS DOES NOT WANT TO PASS HEALTH REFORM-- ALLOW INS AND MEDICARE TO PAY FOR THIS OUT OF COUNTRY- PRRT TREATMENT.....!
THIS IS A MAJOR COST SAVINGS AND WOULD HAVE THE EFFECT OF BRINGING DOWN THE COST OF OTHER THERAPIES, WITH THIS COMPETITION......
MAKE THE MEDICAL INDUSTRY WORK IN A COMPETITIVE ENVIROMENT IN THE USA!
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MY SEAT MATE (AN X DRUG COMPANY EXECUTIVE) WAS ON THE PLANE FLYING BACK FROM GERMANY. I TALKED THIS ISSUE- PRRT, COST OF US DRUGS, OBAMA HCARE, WITH HER.
SHE SHARED A 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 PHARMA COMPANY, THIS MEANT NO MORE SPENDING $$.!!!!
SHE NOTED THAT DRUG COMPANIES "LEARNED THEIR LESSON" WITH THE POLIO VACCINE DRUG DISCOVERY--- ONE INJECTION OR SUGAR PILL AND THAT WAS IT, NO MORE POLIO FOR LIFE.....! HOWEVER, FOR THE PHARMA COMPANY, THIS MEANT NO MORE SPENDING $$.!!!!
SO "GUESS WHAT" SHE ADDED?
"CURRENTLY WHAT DO WE NOW FOR HIV"....?
"WE HAVE A LIFETIME WORTH OF DRUG COCKTAILS, TAKEN DAILY, AT A TREMENDOUS COST, DAY AFTER DAY, WHICH MEANS YOU GET STABILIZED DISEASE, BUT NEVER CURED"......
EXCEPT FOR SOME RARE MINOR CANCERS, WE HAVE THE SAME SITUATION W/ CANCER DRUGS -- MAKE IT A CHRONIC DISEASE AT A TREMENDOUS COST!
NOTE- THIS IS NOT TRUE FOR HEPATITIS A & B VACCINES, IN ADDITION TO THE MERCK VACCINE FOR WOMEN.
WHY IS PRRT (LU177 Y90) NOT AVAILABLE IN THIS COUNTRY AND OR COVERED BY INSURANCE?
START ASKING YOUR MD!!!
START ASKING YOUR MD!!!
.JPG)
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