Update: Not Yet Hormone Refractory

First, I want to thank everyone again who responded to my first post. I guess about a month has gone by and the news this time is somewhat better. After the urologist added Casodex to the Firmagon injection my husband was getting not only did his testosterone fall from 25 to 11, but his psa went down form 6 to 4, where it had been holding for almost three months previously. We saw the oncologist we had seen only once last January and Fred was now changed to a three-month injection of Lupron, keeping on the Casodex 50mg and Avodart. He also got an infusion of Zometa yesterday and says he is feeling good.

I don't really know what to think of this oncologist. He is young (38 years old) and relaxed and pleasant, remembering even my name and what I do after only having seen my husband and me that one time back in January. But when Fred asked the oncologist what the worst case scenario was he said that if the psa has gone up when it is checked again in August and if there are more lesions on the bone scan, the next treatment would be Provenge, followed, perhaps, by chemotherapy. If all this failed, he gave Fred 18-24 months. When I asked about Ketoconazole, the oncologist just dismissed the possibility and referred to two doctors "on the coasts" (meaning, I would suppose, Dr. Myers and Dr. Liebowitz) who are "unconventional and not backed up by any clinical studies." Having done quite a lot of research myself now, I know that doctors at the Cleveland Clinic. among others, are using Ketoconazole and I have had some good recommendations from people on this forum and from an oncological nurse who works at the Clinic. Right now, though, Fred really likes the oncologist and absolutely refuses to get a second opinion. I know better than to try to push him and so can only wait and see how things go and what the blood test and bone scan turn up in August.

What I really cannot understand, though, and what is finally making me very angry is the "end of life" speech the urologist gave us in April and his recommendation that we get in touch with hospice. Certainly, the oncologist's worst case scenario--18-24 months-- is better than that. I just don't know what to think and so am now trying simply to take things day by day.

What I do know for sure is how grateful I am to have found this forum and to all of you who responded to my first post and helped me to keep up hope and pointed me to other doctors and sources of information. Again, I say thank you, thank you all. You are all in my thoughts and in my heart.

Liefde

Checkout www.hrpca.org  (proven treatments area and join there web group at yahoo).

I presume he will stay with this doc, do we know that Zometa was needed this early on or do we have known mets??? Just curious...docs vary alot of what goes on and what they decide on certain patients. One can fire a doc and go elsewhere....sure glad I did. Best to you in the huge fight.

Post Edited (zufus) : 6/2/2011 6:42:10 PM (GMT-6)

Hello again, everyone, and thank you so much for your responses to my latest post. The first thing I did was take your suggestion, rcroller, and read Todd's story. It is truly amazing and inspirational and a source of hope for all of us, I think.

And I also think there is much to what you say, logoslidat. These doctors (at least the ones Fred and I have been dealing with) all really do seem to be technicians in spite of the attempts to be as warm and personal as they can manage. It's hard to know if they can even think beyond the ingrained protocols they use on everyone, for I don't know whether they even see an actual individual human being in front of them, or an accumulation of body parts with an illness. The weird thing is that the urologist who told us to call hospice runs support groups and always talked to us for a long time, but he did not even think to start Fred on Casodex except as an afterthought. When he finished the end of life talk, he remarked that Fred's testosterone had gone from 10 up to 25 and so he could "try" Casodex which, in a month as it turned out, got both the testosterone and the psa back to where they had been the month before, suggesting that Fred is still not yet hormone refractory. Trying to cheer me up, a friend of mine remarked that maybe the urologist talked this way in order to recruit me into one of his support groups.

As for the Zometa, zufus, Fred had an "exploded" bone scan in April (part of which was the reason for the urologist telling us to call hospice). But from my reading, I think what showed up on the bone scan was the result of Fred's being diagnosed in October with a psa of 112 and no treatment being started until late December. This, too, ahd to do with the urologist's protocol.

If I've realized anything, it is to try to learn as much as I can, since Dr. Fred will not do anything in his own behalf, but has finally begun to read medical articles that I print out for him. And that is why I am so grateful to have found this forum. It is not only a source of the latest medical information, but of so much support and hope. I again thank you all and want you to know that my best thoughts and energy are with you.

liefde