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Decision time: Need your help.

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Prostate Cancer
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Posted 2/19/2015 12:43 PM (GMT -5)
Husband, 61, surgery, radiation, 1 yr. HT, 2.5 yr. HT vacation, Itraconazole study, psa held steady at @ 2.5, now rising to 3.36. It's decision time. Dr. Charles Ryan at UCSF has suggested ARN 509 clinical trial or just going back on HT. But aren't there other options? What about getting C11 Pet CT scan with Carbon Acetate through Dr. Almeida in Phoenix, see if we can find out where cancer is hiding, and zap it? Can this be done if you have had radiation after surgery? I'm composing an email to Dr. Ryan ahead of a phone conversation we will have in a week. We need to be prepared to either get in the trial or make another decision. I wake up in the middle of the night with this going around in my head. I take care of the research so my dear man doesn't have to be drenched in cancer 24-7. I've gained so much from the insights and brother-sisterhood here. I want us to "think out of the box" without running after useless ideas, wasting precious time. Thanks to you all.
Posted 2/19/2015 1:00 PM (GMT -5)
Tahoe I am unable to answer your questions, but hopefully our experts will chime in soon. Wishing you and your husband the best
Michael
Posted 2/19/2015 1:24 PM (GMT -5)
Often scans will not be able to detect very small areas of cancer.
ARN-509 supposed to be like an improved version of Xtandi / enzalutamide. Could you have both scans and trial?
I'm not an expert but wish you both good luck.
Posted 2/19/2015 2:10 PM (GMT -5)
What have you got to lose by going on a search-and-destroy mission? While odds are that it is not oligometastatic now, how can it hurt to look?

I have a couple of suggestions for you that may be better than the C-11 Acetate or Choline PET/CT, or at least may save you some money. They are in clinical trials, so the costs may be covered (check to be sure - and let us know.) Call them to see if you qualify - contact details are in the link.

This combines a C-11 Choline PET with MRI for greater accuracy - in St. Louis

This FACBC PET/CT is at Emory U in Atlanta

This 68Ga PET/CT in Houston has been used with great results in Germany

This 18F-DCFBC PET/CT at NIH is all-expense paid - Wampuscats and Sonny have done it.

- Allen
Posted 2/19/2015 6:45 PM (GMT -5)
I had my F18 sodium and C-11 Acetate also done by Dr. Fabio Almeida. None better.

It's not only the better scans but the person interpreting the scan.

LupronJim
Posted 2/20/2015 1:39 PM (GMT -5)
As with Lupron Jim, I also have had the C11 PET/CT scan with Acetate with Dr. Almeida in Phoenix, TWICE!

My story is found in the PAACT magazine VOLUME 29, NUMBER 2 • Summer 2013.

The first time the scan was successful in identifying the site of the cancer when other CT and MRI scans were unable to do so. The met that showed up was zapped using SBRT and I then enjoyed one year without detectable PSA. One year later, however, my PSA started rising again, and the second scan in Phoenix was unable to show confirmed mets when my PSA was measured at 2.0. However, as a testament to SBRT, it did not show any evidence of active cancer in the previously zapped areas using SBRT.

Now, like you, my PSA is 3.21 and doubling at 3-4 months. Decision time.

Tall Allen is a great resource on this site and I am going to try the trial imaging that he has suggested.

Good Luck on your search, and keep us posted.

Houseboy
Posted 2/23/2015 1:15 PM (GMT -5)
Thanks for all your replies. I am formulating my questions for Dr. Ryan. And here's another: Does anyone know if these scans should be done BEFORE HT stops working, or AFTER? I know the body can only take so much radiation, so is it better to just go back on HT until it stops working, then do the scans when PSA rises, and then zap those sites if there are fewer than 5?
Posted 2/23/2015 1:42 PM (GMT -5)
Definitely before he goes back on HT. HT shrinks the mets and makes them practically impossible to find. Earlier treatment is better than later treatment, so if you're going to do it, now is the time. Don't worry about the radiation limit - spot treatments in different areas don't increase risk.

- Allen
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