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Posted 2/16/2012 3:04 PM (GMT 0)

We are desperate to get some answers as to what is available out there after my husbands unsuccessful RP.

He has rising PSA after Oct 2011 RP, it now is 3.5.

We have seen 3 Oncologists and are seeing another one at UCSF

 early March.

Question is has anyone who has similar stats as my husbands (stats below) been in any clinical studies with any UC'S and what were the results???????

Thanks,

BOOGEE

Posted 2/17/2012 3:08 AM (GMT 0)
We are also desperate for information in making the best decision for treatment after RP. Boogee, you are not alone. My husband had surgery in June. 6 weeks later psa 0.7 continued downward trend to 0.3 in Oct. then Dec 0.4 Jan 0.56 and Feb 0.63. Results of RP was 2 pos nodes & one positive margin. Saw Dr. Myers in Jan started on avodart and celebrex in addition to many suppliments and healthy diet (since surgery). Dr. Meyers said we are going for a cure and were scheduled for Sandlake until we learned that husband could not use fereheme. Now waiting for advise on further testing to hopefully find where to treat with radiation. Husband in very good health with no other health issues, 57 and working every day. Any thoughts (not just clinical trials) would be greatly appreciated. The support and sharing on this site means more than you can know. As it has been said many times the information we get from professionals is so conflicting it is hard to know which way to go. Hope and positive thoughts keep us going. Reading all your information!
Posted 2/18/2012 5:22 PM (GMT 0)

Hi searchmode,

I am not one to give advice, but everything I have read... to get best results on radiation the PSA should not reach any higher than 1.0 or lower which is considered undectable. As you can see my husbands never was undectable.

2 radiation oncologists recommended radiation as well as our surgeon, and the Stanford medical oncologist deferred us from radiation due to the aggressiveness of my husbands PSA.

As I stated we have started in a clinical study at Stanford yesterday, 2 more tests( PET SCANS) to follow next week, which has a higher sensitivity using sodium floride to check for mets.than conventional scans

Dr. Srinvas at Stanford stated CT< BONE< and MRI's are all unrealible to be able to pick up bone mets, but that is all conventional medicine has right now.

We have an appt. at UCSF early March with another medical Oncologist.

After that we will have to take a leap of faith.

I wished I could help with more info but there is always hope and that's what we need right now.

I will keep posting as to my husbands test results

Stay positive as we try to as well.

BOOGEE

Posted 2/18/2012 5:45 PM (GMT 0)
Hi Search and Bogee,

(M S. WAMPUSCAT here)
Husband and I are in your same boat..ours has a few extra holes ln it. we feel your frustration and concern. Were on the fourth Dr. And fourth opinion we want to be aggressive but not compromise on QOL.
We will be following this thread and look forward to your journeys. This forum and group of folks have been wonderful for us ..were looking forward to meeting some of the members in April in Baton Rouge at Jeff's GFMPH gathering.

marie
Posted 2/18/2012 6:06 PM (GMT 0)
 

Hi Marie & Hubby,

Sorry about your PSA results post-op. It looks however that his PSA has dropped tremendiously so did your Dr. recommend anything other than the Lupron injection IE: casodex?

My husband started on Casodex first as we were told the lupron causes the testosterone to flair before it goes down?

What are they looking for where DHT is concerned and what is LNI?

Keep posting and stay positive!

BOOGEE

 

Posted 2/18/2012 6:07 PM (GMT 0)
Sorry - this is not an answer to your question, but what is Bilateral Disease? All of the stats in your signature show negative margins, no lymph node invasion etc. The PSA was also very low, so this is very surprising.
Posted 2/18/2012 6:15 PM (GMT 0)
In Prostate cancer bilateral disease means tumor is in both sides (lobes) of the gland. This is the difference between cT2b and cT2c for clinical staging. This is also referred to in post treatment pathology when the entire tissue sample can be examined. It is a common pathology finding.
Any time there is G4 (or G5) there is concern for microscopic spread. This cannot be identified using our current technology. Tumor cells are invidious and may leave without an identifiable trail. The tumor extension, or shadow of the tumor, often is apparent, but sometimes is not. This is the nature of metastasis. Cancer is the Emperor of All Maladies (a particularly fine book to read).
Posted 2/18/2012 6:24 PM (GMT 0)
thanks tarhoosier
Posted 2/21/2012 12:12 AM (GMT 0)
Hi Boogee,

Good luck with those scans this week. We've been there done that and it's always stressful. We didn't have the sodium floride scans or the Casodex.. We've pretty much given up on the local urologist. We went to the best of the best for the da Vinci and that didnt work out too well. The rad onc says given our stats (partin/nomograms Etc) radiation would have been the better choice. RO says radiate now....Med Onc says no to RT because of lymph node involement LNI/"horse is out of the barn" and only less than 10% chance for RT to work plus high possiblity for side effects.
We'll see the MO again for Lupron shot #2 on March 8. and then move on from there. Thank goodness for this forum and the people that make us keep going.
Posted 2/21/2012 4:28 PM (GMT 0)
Boogie,
Charles Myers, Sandlake Imaging, and Datolli have teamed up to treat patients. Myers sends folks to Sandlake for fereheme (iron based contrast solution) testing. This has not yet been approved so there is a fee of $1600. This imaging can show tiny mets in LNodes. Sodium PET can show bone mets. Once testing (5 days) is finished at Sandlake and results show where the cancer is located it is treated by Datolli. This is the route we were going until husband could not have fereheme. We are now waiting for next step and taking deep breaths.
Posted 2/21/2012 7:17 PM (GMT 0)
wampuscat,

We had 2 of three (sodium flouride) tests and got a call from Dr. Srinivas at Stanford that there already is a met. found at the T-11 midback bottom of thorasic spine.
Although small she didn't recommend radiation but sugessted we start HT.
We had already stared on Casodex 2 weeks prior to this test so Lupron injection to follow next week after 3rd test.
First test was (sodium floride) alone 2nd test was the (FDG) alone and the 3rd. this Fri. will be the 2 combined for evaluatuin of malignancy.
Will keep updates as to outcomes.

BOOGEE
Posted 2/21/2012 7:23 PM (GMT 0)
Searchmode,

How does Datolli treat Mets?
Are the other Dr's. Oncologists? and your surgeon?

I am on the other coast of U.S. and have an Appt. with UCSF next month.

Boogee
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