The Erasmus MC (medical center) is the university hospital of the city of Rotterdam, The Netherlands. It is affiliated with the Erasmus University. Official website
PRRT Infromation from the Rotterdamn Clinic, and link to the site & PRRT Report (Erasmus Medical Center)
fyi-PRRT LU177 is the treatment I am receiving at Bad Berka Clinic, from Dr Richard Baum!
The study data below re:results of treatment @ Rotterdamn with LU177 and noted 40 months of stability from the start of treatment!
Also, as noted, 40 months, with so many patients, means an average range of patients from ~10 months, to ~100+ months! I would love to dream that I can be on the "right hand side" of the chart when its over; however, I know I have a lot of issues going against me-tumor burden is very high, mets widespread (lungs and brain are what is clean so far!), I have advanced cancer disease, moderate to high kidney disease- GFR 40!, memory problems measured in a 2 day test, pain, and other non cancer issues which really make the cancer issues eve worse!).
Link to Erasmus Medical Center- PRRT information->
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STUDY RESULTS OF Lutetium-octreotate 177 @ Erasmus MC
From January 2000 until August 2006 1772 treatments with
lutetium-octreotate were given to a sum of 504 patients. Most
patients had neuroendocrine tumours. A preliminary analysis
in 310 patients with so-called gastroenteropancreatic tumours was
performed after obtaining all results after finishing the treatment.
This showed a decrease in the size of the tumours in 46% of patients, stable
disease in 35% and progression of the tumour despite treatment in 20%.
81% of patients had either decrease or stability!
These are pretty good numbers! And the real kicker, except for side affects after treatment, one has a very high quality of life after treatment!
In most/some cases, one can stop LAR injections as the treatment works on the tumors so well!
Per the report "A significant improvement of quality of life in those patients with tumor regression was also noted."
The average duration of the effect of therapy was 40 months, calculated from the start of therapy. (this means some people received benefit from a few months to 100 months!).
NOTE: people that undertake combined therapy with y90 and Lu177, survive longer, I HAVE HEARD FROM AN MD. I have HEARD 55 to 60 months effect of therapy (>with ranges of few months to 110 months!)
>>>>>>>>THESE DATES ARE FROM START OF THEARPY.
TYPICALLY ONE RECEIVES 2 TO 4 THERAPIES, RANGING FROM 4 TO 6 MONTHS BETWEEN EACH THERAPY).
Finally, per study conclusion, "in addition, there are strong indications that patients treated with Lutetium-octreotate, on average, survive several years
longer (3-6 years) than patients who did not get this treatment."--
Study Data dated 2006 in Rotterdam.
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PRRT LINKS ON THIS BLOG- FYI
TO GET ADDITIONAL INFORMATION ON PRRT, PLEASE REFER TO LEFT SIDE, DOWN AND LOOK FOR A SECTION WHERE THERE ARE LINKS ON PRRT - STUDIES, ROTTERDAM WEB SITE, ETC. -- ON THE BLOG. STUDY THEM AND DO RESEARCH ON THIS AND WORK WITH YOUR US MD.
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Additional data on treatment overall: PER STUDY
Lutetium-octreotate (LU177- this is what i used) is a radioactive labeled peptide which can be used in radiation therapy, both internally and locally. This peptide binds well to
certain receptors on cells, the somatostatin-receptor.
These receptors are almost exclusively found on a relatively rare kind of tumors, the neuroendocrine tumors.
(this is why I ask, from all the studies for this disease, why no studies in USA on this therapy? ) This is the ONLY THERAPY LABELLED FOR NET TUMORS!
An Indium-octreotide scan (Octreoscan) can be used to determine whether
a tumour has these receptors or not.
Item- Bad Berka uses PET w/Gallium 68 to determine tumors, and uptake, plus/CAT scan fusion. This is a much more advanced imaging and called the "GOLD STANDARD" for tumor imaging of the tumor than what is used in the USA- Octreoscan.
This scan also determines if peptide receptor radionuclide therapy (PRRT) could be possible for an individual. They also perform extensive kidney tests which are very advanced to determine the performance of your kidney such as tubular function, GFR, etc.
> The readings I got from the tests at BAD BERKA were the absolute best in terms of detail, clarity and explanation by Dr Baum which I have received in my 8 years of imaging!
A high density of receptors results in a higher uptake of radioactivity by the tumor and treatment outcome is expected to be better.
Rotterdam & Bad Berka performs tests prior to therapy to determine if you are a candidate (e.i., receptors will take up treatment), and how to tailor your specific dosage.
The Bad Berka tests (THIS IS THE ONE I KNOW SO I WRITE ABOUT THIS ONE MORE. THE OTHER SITES ARE VERY GOOD ALSO BUT DO THINGS DIFFERENTLY) will then develop a % uptake for EACH TUMOR AND METS, which enables them to determine the estimated uptake for each mets, prior to treatment, and then gives them the actual data (uptake) after therapy.
Treatment at Bad Berka (note: the Rotterdam TREATMENT SUMMARY ARE on their web site LINK ABOVE):
The therapeutic LU 177 dose is given via infusion in Bad Berka over 15 minutes. The infusion will take 4 hours altogether as it includes renal protection using amino acids (lysine+arginine) and in addition a gelatine agent (Gelofusal) and severe hydration (up to 5 L/day).
In my case, due to the kidney issues, I received 2 days of amino acids, and 2 days of iv hydration. I also drank 2-3 liters of water and liquids daily, even now.
My kidney tests via blood samples indicate better activity than prior to treatment (40 GFR Pre, 58 GFR Post- NOTE THIS IS DUE IN PART TO HYDRATION)
A patient may receive up to 4 total therapies (perhaps more), FOR ME, its spread out over ~3.5 months between treatments.
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QUESTION:
WHY IS THIS THERAPY NOT IN THE USA?!?!?!?!
WHY IS THE MOST ADVANCED COUNTRY, WITH THE WORLD'S MOST ADVANCED MEDICAL OPTIONS AND RESOURCES, NOT HAVE THE PRRT TREATMENT AS ONE OF THE OPTIONS FOR PATIENTS WITH THIS INSIDIOUS DISEASE?? - WRITE ME IF YOU HAVE THE ANSWER!
I DO NOT UNDERSTAND IT...It would help to WRITE YOUR CONGRESS PERSON, THE PRESIDENT, THE VICE PRESIDENT, THE SPEAKER OF THE HOUSE, your MD and the drug companies IN THIS BUSINESS (MOST ARE ON THE LINKS ON BLOG).
WRITE THEM and ASK WHY, AND NOTE WHAT THIS THERAPY WILL DO...!
FOLKS THIS IS PERSONAL FOR ME....I AM DYING FROM THIS DISEASE, AS ARE OTHERS, AND THIS SYSTEMIC THERAPY IS NOT AVAILABLE HERE IN THE USA.....?!?!?!
THERE ARE OPTIONS WITH OTHER DRUGS (ON LINK ALSO), LABELLED FOR OTHER CANCERS, TYPICALLY WILL STABILIZE THE TUMORS (OR % GET PARTIAL RESPONSE), AT A HIGH COST AND WITH STRONG SIDE AFFECTS. THIS IS SOME AVAILABLE IN THE USA:
SANDO/LAR
TEMEDOR
XELODA
SUDENT
AFFINITOR/RADOO1
NEXEVAR
AVASTIN (MOST POPULAR TO USE)
AND OTHER SYSTEMIC DRUGS........
THIS WEB SITE ALSO HAS AN EXCELLENT SUMMARY OF ALL THERAPIES AVAILABLE:
http://www.carcinoid.org/pcf/treatments.shtml#ot
GOOD LUCK, STAY FOCUSED AND DO NOT GIVE UP!!!!
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