PRRT 2ND ROUND- THERAPY RESULTS & MY TEST DATA-- IS PRRT IS NEPHRO-TOXIC?!

PRRT RESULTS, PIC of ME  Post LU177 Therapy

This is what I look like Nov 12, 2009! Compare to pic below from Nov 2008! (There is a movie, Papillon, where the guy in the isolation prison ward sticks out his head next to Steve McQueen and asks him "HOW DO I LOOK"?!
This is me today asking "HOW DO I LOOK"?!

   I jjust came back from my nephrologist were we reviewed the results of a blood test called a renal panel test.

This is my third blood test, and 2 months after Lu177 therapy *(2nd round)......

sorry about the camera foto but I was alone and only way to show my face and status! feel free to comment on my rugged good looks and masculine features! :) PRRT a beauty enhancer perhaps as sideline label?

Is PRRT Lu 177 nephro-toxic?!?!?!

Quest Diagnostics 11.11.2009 RENAL PANEL RESULTS:

TEST       RESULTS

Creatinine    1.4             Range .76-1.46
BUN              16             Range 7- 25
GFR            ~60             Range normal 60 or higher

The Pic above is what I look like now, after PRRT, and the blood data re: kidney tracking, since I have only one, and undergoing PRRT.
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BELOW ARE THE KIDNEY NUMBERS in May 2008- prior to 1st prrt therapy:

May 2008 RESULTS- prior to 1ST THERAPY of PRRT
Creatinine    1.9  (was rising every month)!
GFR     low 40 to high 30's (and getting close to dialysis numbers!)
Also: High grade edema

Below is a picture of me and what I looked like Nov 2008 on Pazopanib, during my walk a thon FUND RAISER for CFCF....all I needed here is a sickle, and a long white dress, and I am a cinch for "Father Death", no?!....Note: the drug helped me, to be clear, but did change my appearance, w/significant side affects and when I finished, I had many more tumors than when I started including bone mets.

I have just started my "marriage" to PRRT, and longer range results are pending, but this these results are very encouraging! Tell me what you think?

(I documented Paz results and side effects on prior entries--search on blog- Goggle search on this blog). Also, search on links the worry about VEGF drugs.

Turkey day walk, 2008

My nephrologist told me today, after seeing the blood numbers,  that he is going to start sending folks with CKD to Bad Berka & PRRT for kidney improvement...:)))) 
He can not believe it what has happened to me!

Net, one of the many issues I was dealing with in May 2009 with my disease and tumors was the fact they were flowing via the lymph nodes, all the way to my kidney, aorta, in addition the lymphatic vessels were blocking the blood flow to the kidney--(btw, Dr Baum noted this in our first visit before scans!).

PRRT/LU177 looks like it has "knocked the snot out of it!"

CURRENT STATUS AFTER PRRT:

• No or little edema in my feet and hands
• No Pain or little pain. But I am on oxycotin due to side affects, but down from 100mg to 60mg and going to 40mg with glide path to get off by 2010!
• ~Normal Kidney Values TODAY
• Tumor Burden has been reduced by 70 to 80%, in all areas (see reference scans below on link), including elimination of Bone Mets,--- HIROSHIMA BABY!
• Fatigue is a problem, I am tired during the day and its very difficult. Good thing, no more sleeping pills though! I drink a lot of GREEN TEA btw-Arizona Green Tea with ginseng and honey, and hot tea throughout the day and for sleeping (sleepy time time) w honey.
• Dr Baum noted to drink Green Tea, a lot of it, as its good for the one kidney (and water). He noted drinking a lot of tea/water is like making the kidney "working out & makes the kidney work more & it will get stronger & better as you body does with work outs"....makes a lot of sense. > 99cents 22oz can BTW! Just don't spill contents on PC keyboard.

2nd Rd PRRT
The 2ND round uptake data was measured and just as high or higher than 1st round! LIVER: 269 SuV, average 53 liver mets, Belly: 78 SuV belly, average 30.
For those learning, these numbers mean what? Well, the higher uptake values as measure above, the higher the tumor kills, as the tumors are covered with radiation laden Dota Toc. High dose of radiation, targeted to the tumors, means deab tumors baby!
You should always ask for these numbers if doing prrt. It predicts the future pretty well). My one little ol' kidney, conversely, got a very low uptake of radiation -2 SuV, average 5 SuV)! This is due to the kidney protocol used in Bad Berka, God and a small fan I had in my ward room, and the "Lucky Stone" Dr Baum purchased for me in May due to my initial results with the words "I am the luckiest man in the world Steve!" (fan is inside joke for my roommate:)

Kidney Damage with PRRT?
I was mailed an Italy PRRT center by a friend (my roommate in BB!) which I will POST on the blog. It outlines in detail in PRRT dosimetry and kidney and bone marrow issues with PPRT. 
It notes how Lu177 (and Indium 111), if it does any damage to the kidney, remember there is a lot of protection being done with the therapy, is taken up in an area that is repairable by the kidney--the tubes in addition to low radiation levels (2mm).

Y90 PRRT, again if one gets too much uptake in the kidney, may create more issues down the road, as another section of the kidney gets the radiation taken up- this area is NOT REPAIRABLE by the kidney, in addition to a longer wave length, 11mm, per the study.

Here is the paragraph from the article for reference:
"In addition to the suborgan activity distribution, the physical characteristics of the radionuclide can be a major determinant of the nephrotoxic potential of the agent and, hence, of the risk–benefit balance. This has been confirmed clinically by the frequent occurrence of renal impairment in patients treated with 90Y-peptide therapy compared with the sporadic incidence observed with 111In-DTPA-octreotide and 177Lu-TATE therapies (despite mean cumulative kidney doses up to 45 Gy) (3,51).

Two potential explanations are the particle range and the site of peptide accumulation:

Lu177- localization in the proximal tubuli, with their cells, able to repair and regenerate, Y90-versus the glomeruli with their radiosensitive cells, not able to regenerate, can make a major difference in outcome.

Therefore, the Auger electrons of 111In-peptides, and also the short-range b-particles of 177Lu-peptides, irradiate the tubular cells more selectively compared with the glomeruli.
On the contrary,the long-range b-particles of 90Y-peptides may increase the toxicity due to the irradiation of the glomerular cells.


Net, it's a very well written report, and outlines kidney issues with PRRT, dosimetery and potential problems and how to avoid or how the body manages it.

Additional Data

This is PET GA68 scan data from therapy; before and after therapy:
1st link is a blog entry with scans PRIOR TO MY FIRST THERAPY-- done on MAY 18, 2009, SCROLL DOWN WHEN YOU GET TO THE BLOG ENTRY FOR THE INBEDDED SCAN MOVIE- click bottom left arrow:
http://www.blogger.com/post-edit.g?blogID=150514251112825501&postID=8128017386111759700

This link below is after the 1st THERAPY- taken SEPT 18, 2009:
SCROLL DOWN FOR MOVIE, CLICK ARROW on bottom left

http://www.renalcarcinoid.com/2009/10/sept-2009-post-prrt-therapy-petwga-68.html

Finally, another scan view below, a 360 degree view, all around scan, before therapy (the bottom pics taken in May 09), and top, after the 1st therapy (taken Sept 09).

The black areas on the scans are positive receptor tumors, except the spleen, which looks like a black round ball, the spleen is normal uptake. The other black areas are tumors....Compare the top view to the bottom view and the black areas reductions after 1 therapy...tumor kills baby!

"Welcome to my friend "lutetium 177"", for those uninvited tumors in my body, trying their best to torture, cause me pain, and eventually to kill me!

finally, the nice thing about this treatment, unlike other therapies, where tumor cells may become resistant to the treatment. I have yet to read anything relative to tumor cells becoming resistant to radiation!

Good uptake, Boom, they're dead, NET tumors!

SUMMARY SO FAR FROM MY PRRT EXPERIENCE

I was on a steady, and rapid health decline starting Feb 2009, with nowhere to go, treatment and denied by insurance ("keep you hands off my health care insurance"!).

>PRRT, if done correctly and in an experienced center, can extend your life and improve your quality enormously!

To be clear, "everything needs to work"- uptake, good clinic, expert Md's, etc!

To date, my results have been AMAZING; dramatic, with improvement of health, quality of life, tumor burden reduction, and organ improvement.

I now only take 4 pills a day now, prior to PRRT, on VEGF it was 12! pills per day, due to the side affects that come with it (HBP THE MOST DANGEROUS).

"Pictures and numbers don't lie!"

If anyone wants more information on the results, I have additional scans, CD's and tests, which I can gladly share, if of interest, or if it will help you with your MD to make a better decision.

Please ask me for it. Also, help me to find any errors, omissions and issues if you feel the results or scans are wrong, please advise.

FOR READERS OF THIS BLOG CONSIDERING PRRT

THIS THERAPY WORKS BETTER THAN ANYTHING WE HAVE AVAILABLE FOR NET PATIENTS- SYSTEMICALLY- in North America!

FOR ME, SO FAR, AND FOR MANY OTHERS, IT CAN BECOME A LIFE EXTENDER, WITH EXCELLANT QUAILITY AND LIFE IMPROVEMENTS! 

PRRT Experimental? There are 10-15 YEARS OF CLINICAL DATA WITH PATIENTS, COMPLETED IN EUROPE AND USA!

WHY IS IT NOT IN THE USA?

FINAL NOTE- A FACTOR NOTED BY THE BASEL MD IN A PRESENTATION ON CNETS CANADA IS "HOW DO YOU FEEL", AFTER THE PRRT THERAPY.

HOW DO I FEEL?-- I DO HAVE A LOT OF FATIGUE, IT DOES NOT COME WITHOUT A COST, AND LOW WBC (BUT NOT MUCH).

I AM MUCH BETTER NOW THAN PRIOR TO UNDERTAKING WHAT AMOUNTS TO A LIFE SAVING PRRT THERPAY. I ALSO FEEL BETTER EX & INTERNALLY, AS I NOW HAVE PUT TOGETHER AN EXCELLANT MEDICAL TEAM-- USA AND EUROPE, HELPING ME TO DEFEAT THIS DISEASE, MANAGE BY SIDEAFFECTS, TESTS AND TAKING CARE OF ME.

I NOW WAKE UP KNOWING THAT I AM KICKING THE SHIT OUT OF THESE TUMORS, INSTEAD OF THE OTHER WAY AROUND!

"SAY HELL-O TO MY LIT-TLLE FRIEND" NEUROENDOCRINE CARCINOMA!

CONCLUSION

READ & LOOK THE THE PICTURES, THERE ARE PLENTY MORE in THIS BLOG (go to May on), INCLUDING STUDY DATA AND LINKS.

IF APPROPRIATE, IN YOUR DISEASE COURSE, TALK TO YOUR MD ABOUT PRRT, AGAIN, IF APPROPRIATE.

HOWEVER, AS NOTED, DEPENDING ON MANY FACTORS, THE BEST TREATMENT FOR THIS DISEASE IS A GOOD SUREGON, AND RE-SECTION OF THE TUMORS INITALLY.

HOWEVER, FOR METATSTIC DIESASE, PRRT IS A VERY GOOD OPTION FOR MANY PEOPLE. THE BEST IN MY BOOK!

IF YOUR MD IS UNAWARE OF THIS THERAPY, OR IS NEGATIVE ON IT,

I WOULD RECOMMEND GETTING A SECOND OPINION AND FINDING AN MD THAT IS MORE ALIGNED WITH THE THERAPY, ITS BENEFITS, ITS PROBLEMS AND WELL READ ON THE 15 YEARS OF HISTORY AND STUDY DATA.

THERE ARE MANY GOOD MD'S IN THE USA THAT WORK WITH THIS OPTION, INCLUDING MANY OTHER THERAPY OPTIONS, TO FIGHT THIS DISEASE.

PLEASE REMEMBER, ONE CAN UNDERTAKE THIS THERAPY-- EVEN WITH ONE KIDNEY, AND LOW KIDNEY LEVELS. JUST USE LU177. EVEN WITH LARGE TUMORS, IT WORKS VERY WELL (SUPPORTED BY ME, BAD BERKA AND ROTTERDAM STUDIES).

BY GOD, I DID IT! YOU CAN IT TO!

AS FYI- I USE DR MANISHAH SHAW IN JAMES CANCER CENTER IN COLUMBUS, OHIO.

SHE, AND HER STAFF, ARE EXCELLENT AND VERY KNOWLEDEGABLE ABOUT THIS THERPAY, AND ALSO HAVE MANY OTHER OPTIONS INCLUDING SURGERY, ETC.