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Disappearing Bone Mets - Dr. Myers

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Posted 5/26/2014 9:03 AM (GMT 0)
Jim, that is great. Really good reaction to Lupron, that is exactly the desired result! Awesome!!
Posted 5/26/2014 11:09 AM (GMT 0)
Hello David,

Glad to see you up and still at it! You are an inspiration to us all. When are you coming up to Boone for a visit?

I have developed Osteoporosis while on Lupron 12 mos. The URO never mentioned it or an estradiol patch to prevent it...and I forgot to question it. Now I have to be on Provia or Xgeva, or one of the other types. But thank God my recent MO did the Dexa.

Robert
Posted 5/26/2014 1:11 PM (GMT 0)

Time101 said...
Hey Jim,

That is fantastic. Great news!! Where in FL and what type whole body scan did you have? Now have a great Memorial Day weekend.

Best,

Robert

Hi Robert - we are in west central FL (Citrus county) about 90 minues North of Tampa and NW of Orlando
Posted 5/26/2014 1:13 PM (GMT 0)

houseboy said...
Great news, you are now a Poster Boy for Lupron!

Houseboy

As I recall Houseboy is the celebrity with articles devoted to his exploits:}
Posted 5/26/2014 1:55 PM (GMT 0)
Way to go Jim. Sounds great. Have a good weekend. Greeting from Iowa

Carl
Posted 5/26/2014 9:04 PM (GMT 0)

w0hll said...
Way to go Jim. Sounds great. Have a good weekend. Greeting from Iowa

Carl

Thanks, Carl.

Will be in the land of the corn June 27 for a wedding. Chance to wear my Sonny & Sherry tuxedo
Posted 5/27/2014 10:16 AM (GMT 0)
Jim

U da bomb

Jim
Posted 5/28/2014 9:48 AM (GMT 0)
Jim, you talking to yourself again?:}
Posted 7/4/2014 2:09 PM (GMT 0)
Houseiboy and MikeM53:

in my reesearch I came across this year ago thread called "Anyone done SBRT?"

www.healingwell.com/community/default.aspx?f=35&m=2745278

Are you two still doing well with no unbearbale side effects?

It appears I will be joining you in the Oligometastatic SBRT with curative intent alumni.

Thanks to Tall Allen, I hooked up with Dr Chris King at UCLA who will be inserting the gold fiducials on August 8, then doing his planning the week of 8/11 to maxiumize radiation delivered to prostate, prostate bed and pelvic lymph nodes while minimizing any radiation ot helathy locations.

SBT is 5 sessions Mon 8/18, Wed 8/20.Fri 8/22, mon 8/25 and Wed 8/27 possibly done concurrently with 3 Provenge treatments to leverage what Tall Allen tells me is the abscopal effect

www.immunotherapyofcancer.org/content/1/S1/P115

www.ncbi.nlm.nih.gov/pubmed/14967443

My seonc PSA test would be July 10 and third PSA test needed to on paper show castrate reisstance would be on July 24. two consecutive PSA increases along with the C-aa Acetate scan would form the basis for the business justification for Provenge.

If Dundreon approves in one week, the 3 Provenge Cycles would be

Fridays 8/1, 8/15 and 8/29 for cell collections
Mondays 8/4, 8/18 and 9/1 or 9/2 dependiong on Labor Day.

If approval takes 2 weeks

Fridays 8/8, 8/22 and 9/5 for cell collections
Mondays 8/11, 8/25 and 9/8

So either way sme concurrence with Provenge and SBRT 8/18 - 8/27

A side benefit I may be in LA for Sep 5-7 PCRI COnference at LA Marriott that seems like a heck of a deal $60 registration and $99 nightly Marriott hotel rates

prostate-cancer.org/events-calendar/conference-2014/

LupronJim
Posted 7/16/2014 8:25 AM (GMT 0)
I had a joint telephone consult on July 15th with Dr Mack Roach from UCSF and Dr. Brian Moran at Chicago Prostate center.

UCSF analyzed all my past slides including the F18 Sodium and C11 Acetate I had done per Scholz/Lam/Turner recommendation at AZ Molecular Imaging in Phoenix by Dr Fabio Almeida.

UCSF agrees with Dr Fabio that I no longer have any bone mets, if I even ever did, perhaps a case of small imaging firm in remote area of Florida misdiagnosis.

Lesson learned if you live in a very remote area that does perhaps one or two PCA scans per month, go to the big guns like Fabio Almeida in Phoenix, or Sand lake Imaging in Orlando or one of the big cancer centers MD Anderson, UCLA, Univ of Florida & Shands, MSK etc.

Dr. Almeida's workstation to review my slides with me was like a NASA command center. He does 3-4 scans per day and uses F18 sodium test that is more reliable than standard whole body scintigram that can be more of a Rorshack test subject to interpretation.

At this point I have been downgraded form stage 4 metastatic treatable but not curable palliative only to locally advanced PCa with a chance of cure- there's a big difference.

I will soon decide on what flavor of radiation to my prostate, prostate bed and pelvic girdle since the F18 suspected lymph node involvement and the C11 confirmed 3 micro LN's contained in pelvic area.

LupronJim
Posted 7/16/2014 7:50 PM (GMT 0)
Lupron Jim:

Glad to hear of your progress. Herein answer to your question: "Are you two still doing well with no unbearbale side effects?"

Now almost one year out to my last session of SBRT that targeted my left ischism (my previous sessions targeted my prostate, left acetabulum and right trocanter, all in 2012), my Canadian scans show no activity in the radiated areas (4 altogether). However, since last September I have a 'creeping' PSA from 0.1 to 0.72. It appears that the Zytiga is not having further effect.

In speaking to Dr. Almeida, if and when the PSA hits 1.0 and the PSA DT is less than 6 months, I will be off again to see if his C-11 acetate scan can once again pick up the precise spot that may be causing my PSA to rise. And if that area can be zapped with SRT safely, I will be scheduled to have it done as part of the same study at Sunnybrook Hospital.

Again, no side effects that I know of with my SBRT. I will keep watching for your posts on your SBRT and follow ups. Good Luck!

Houseboy
Posted 7/16/2014 11:09 PM (GMT 0)
Houseboy, sounds like you like me defied the odds and got useful results from your C-11 despite having a PSA well below the threshold of 2.0 or above where C-11 Acetate is deemed most useful.

In your case the bone mets truly disappeared whereas in mine, the bony mets were apparently never there if first place, a faux pas by local imaging firm in remote area of FL where I live.

No effect no foul though since I needed Lupron to prep for radiation anyway, well maybe not 18 months Lupron but some.

LupronJim
Posted 7/17/2014 1:21 AM (GMT 0)
Awesome news!
Posted 7/17/2014 1:27 AM (GMT 0)
You guys rock!!!!
Posted 8/4/2014 9:35 PM (GMT 0)

Time101 said...
Hey Jim,

That is fantastic. Great news!! Where in FL and what type whole body scan did you have? Now have a great Memorial Day weekend.

Best,

Robert

I am in west central Fl (Citrus county) an hour plus north of Tampa and about 1.5 hours NW of Orlando in middle of nowhere.

I am not sure how many prostate cancer slides the local imaging firm does, and lesson learned was when you live in a small town, don't rely only on locals, go to experts like Dr Fabio Almeida at AZ Molecular Imaging in Phoenix where I went or Sand Lake in Orlando, UCLA, UCSF, MSK, MDA etc,

The local firm had done the standard bone scintigram that is kind of like a Rorshack test subect to interpretation, but Dr Fabio did the more advanced and less subjective F-18 Sodium and C-11 Acetate, the latter on my dime. Normal cost is $3,000 but since I did at same time as F-18, package price out of pocket was $2,500.

Typically the C-11 is most accurate when PSA>=2.0, and mine was only 0.23 at the time. However F-18 confirmed no bony mets but suspected lymph nodes and C-11 confirmed 3 micro LN's contained in pelvic area.

So remedy will be radiation (to proste, to what would be called the prostate bed if I had had it surgically removed and the entire pelvic girdle not just the 3 micro LN's) with a chance of a cure but realizing I still have very aggressive G9 locally advanced PCa.

LupronJim
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