quest from wife @ hormone refractory

Coffee,
I dont know the answer to your questions but glad you are here. A number of us on the forum are in IMRT at this stage, and most of us had surgery first. Hope you get some responses soon and keep us posted. Be blessed.
Michael

Use internet, books, forums like this and learn all you can, so you can know about your possible options on many drug therapies and some work fairly well on HRPCa (atleast for sometime frame)..you need to know about trade offs as to quality of life and what you might be subjected too. Check out [email protected] or such, these folks are dealing and sharing information on refractive patients in real time(globally), Howard Hansen is the moderator he currently has brain mets going on, knowledgable guy and mega PCa fighter...he was dx in 1993 and so 17 yrs. of battling PCa thus far and he has helped many get good and better information.

You need to be using a PCa oncologist in this scenario, hope you are not under a uro-doc as this realm is out of his league.

Best to you (seek and you shall find...) 

Post Edited (zufus) : 2/27/2010 10:28:43 AM (GMT-7)

Hello Everyone who has answered my posting! I am sorry, I haven't figured out how to answer each of you individually yet. I am not that great on the computer, but will figure it out.

I truly appreciate all of you for your responses. It is very scary not understanding this whole situation with my hustband. I don't get to talk to the Dr. by myself, so have not had many questions answered. My husband does not like to talk about it with the Dr., brushes off any negative remarks that the Dr. tries to say, tells the Dr. his PSA is not high and that he refuses radiation. The Dr.'s have repeatedly tried to convince him to have radiation for the last 10 yrs. and still tries, but my husband says "no". So, now that it has reached PSA of 10, the Dr. agreed to put him on Casodex along with the Zolodex injections and wants to see him April 27th to see if it brings the PSA down.

The Dr.'s report from the VA medical records states that he believed the cancer had metastasized in 2004. It has doubled (PSA early on). I don't know what to expect, don't know how to ask questions without sounding horrible concerning what to expect of his life span, and just don't have anyone with knowledge to talk to. I have decided to contact his Dr. and talk to him on the side. I did find something on the internet that said if the PSA does not go down after 3 consecutive months while being on Zolodex that it is considered hormone refractory. I will talk to his Oncologist as soon as I can so I know what to expect and how to plan for the future. I realize that everyone's situations are and can be different as well as end results. We are Christians and talk about the situation between ourself bluntly and realistically. I just want to know the truth as to what is really happening so I will be prepared in every sense. My husband wants me to be financially and emotionally prepared for what may happen and I do too. Thank you all for the information you supplied on here. I will look everything up to better educate myself. I wish you all the best and will say a prayer for you as well. God Bless You all....thanks for all for sharing your experiences and knowledge.

Thanks Zufus, :) He has had a PSA from an outside source and it was close to the same number. The Zolodex does not work and has not for many months and still my husband refuses to get off of it, even after the Dr. told him it was not doing any good. He says, "if I didn't take the Zolodex, it would probably be worse". He tried the Casodex by itself for about a month or two about a year ago and did not like how he felt on it and the side affects. So, he had the Dr. take him off of it, put him back on the Zolodex and now has come to the point where his PSA is rising steadily with every check up. Now, he is asking to be put on Casodex with the Zolodex and the Dr. said o.k., since he will not take radiation or chemotherapy. He is very stubborn on this and will not budge. The oncologist says he will send the Casodex in the mail and check his PSA on April 27th and that is all he can do since my husband is not willing to take radiation or chemo. I will keep researching and show him what I find. Although, what I have read is that if you don't get the radiation within the first 2 yrs., the radiation will probably not help. He is comlaining of more back pain now and is looking very pale. It looks as though he has aged tremendously in the last year..more than usual. Thanks for your input. I wish you the best with prayer.

Thank you Goodlife,

You are right, my husband is being stubborn and he may change his mind after his next April appt. His PSA is 10 and I was wondering if this number is high enough to do some kind of test to see "where" the cancer is in his body? The VA in Asheville, NC, where he goes says his PSA has to reach to around 10 before they could do a test to find it. He had a bone scan about 6 mths ago and they said it wasn't in his bones. Has not had a lymph node test since 10 years ago. He is now having problems with "flushing" feelings going up his neck into his head and light dizziness with it. He has an irregular heart beat which he has had for years, but now he is having these new symptoms and says it feels like he can't breathe well when it happens with the flushing in neck at times. I don't know if this is being caused by the prostate or is a separate heart problem. The VA has him scheduled to wear a heart wiring harness in about two weeks. With his PSA rising 1/2 a pt. to a point every 3 months a normal number or does that mean it is rising fast? I still have to talk to his oncologist privately. If it spread to his bones or lymph nodes, would he still have years of life left? And would the chemo help? I had heard the chemo and radiation won't help him now. Thanks for your kindness.

Thanks RT.... I will do that. :)

If you go to the site www.hrpca.org Howard has a lot of very good information.