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Posted 6/1/2016 8:10 PM (GMT 0)
CT and MRI scans yesterday, met with MO today. Scans now show progression of existing osseous metastatic disease (which we didn't know existed). Scheduled to start taxotere next week. MO must have read the study on patients being uninformed of prognosis and says average after starting chemo is 8 mos and with all the G10, less than that. We were floored and are looking for more aggressive treatment if there's any real advantage. We were dumbfounded to say the least. We knew it was aggressive, but not this. Any recommendations?
Posted 6/1/2016 9:54 PM (GMT 0)
While we wait for one of the guys with answers to your questions to show up, I will point out that the one thing that almost all oncologist's estimates have in common is that they are wrong -- one way or the other. We have members who have beaten their doctors estimates by a factor of ten and are still doing OK. That 8 months estimate is an average figure and it includes lots of guys who are older, less healthy, and less determined. They pull down the average but they don't post here very much... or very long.

The trick is to figure out how to not be one of those guys. We'll work on that.
Posted 6/1/2016 11:32 PM (GMT 0)
Mary, Dan, so sorry for your situation. I don't have enough knowledge to offer advice, but plenty of people here do and will chime in here, no doubt, shortly.
As Peter said. Don't listen to the time comments given by anyone, statistics matter to a large group, they matter little to a group of 1.

Hang in there, advice. Coming, meanwhile we'll try to keep your thread near the top.
Posted 6/2/2016 12:09 AM (GMT 0)
Do not let the medico's define your husbands spirit...they are for the most part grumps who deal with death to the point they can not convince them self that they fear it...so their smugness defines them...not all but more than...back in the day....I would suggest you look for another Urological Oncologist at a top medical center for a second opinion on your husbands complete pca case history...fear not your medico's...find one who can restore hope...not one who projects despair...
Posted 6/2/2016 3:29 AM (GMT 0)
Thanks for the words of encouragement. As Dan said, sucks to be him. I've contacted Mayo, MD Anderson and NIH. He's young, healthy, and feeling great and we aren't ready to believe this is all we can do. We're also a little PO'ed that the bone mets from the previous scans weren't even mentioned at the time. Thanks again to you all.
Posted 6/2/2016 4:49 AM (GMT 0)
I have a suggestion. If you want a "throw everything but the kitchen sink at it" approach (as I would in your shoes) you might want to consider the new "DYNAMO" clinical trial at MD Anderson. It's got the hottest new hormonal (ARN-509) plus Zytiga plus either Yervoy (a "checkpoint blocker" immunotherapy) or Jevtana plus Carboplatin (chemo cocktail). If you're interested, call them now, before he starts on Taxotere.

A Dynamic Allocation Modular Sequential Trial of Approved and Promising Therapies in Men With Metastatic Castrate Resistant Prostate Cancer (DynaMO)

A few other of my favorite combo-therapy trials are below. (I suspect combo therapies may work better than sequential therapies)

Docetaxel + DCVAC - /clinicaltrials.gov/ct2/show/NCT02111577
Docetaxel + Cabozantanib - /clinicaltrials.gov/ct2/show/NCT01683994
Xtandi + Everolimus: /clinicaltrials.gov/ct2/show/NCT02125084
Xtandi+Zytiga: /clinicaltrials.gov/ct2/show/study/NCT01949337
Xtandi+Prostvac: /clinicaltrials.gov/ct2/show/NCT01867333
Provenge+Yervoy: /clinicaltrials.gov/ct2/show/NCT01804465
Immunotherapy: /clinicaltrials.gov/ct2/show/NCT01140373
Provenge+Keytruda+Cyclophosphamide (immunotherapy cocktail): /clinicaltrials.gov/ct2/show/NCT01420965

Are you saying they knew he had bone mets in February before he was given primary radiation? You should be more than a little PO'd about that. But I guess you have to focus on the work ahead.

Let me know if I can help in any way.

- Allen
Posted 6/2/2016 5:10 AM (GMT 0)
Allen - I was given a copy of the scan reports for yesterdays scans which report existing mets have "progressed" or are "more pronounced, along with several new ones. These even included one in his shoulder blade where he had complained about pain in early March. We have an appointment for Docetaxel to start next Wednesday, but I've already sent a couple emails; and will be making more phone calls tomorrow. As always, you're advice is greatly appreciated. Mary
Posted 6/2/2016 2:43 PM (GMT 0)
There may be a benefit in debulking the primary tumor with radiation, but it should have been your choice after a careful discussion of risks and benefits of debulking. I hope Dan didn't have many side effects from it, and he's able to get on a clinical trial.
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