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Posted 10/17/2009 8:14 PM (GMT 0)
Hi all,

We have been reeling with shock for almost two weeks and so I thought I would reach out to all of you for any advice.

My husband went to get the results of his psa test a week last tuesday. They had been rising somewhat, from 1.9 to 2.5 in the space of three months.

Well, his psa has gone up to 8.3 - massive in the scheme of things! His consultant now says he should stop taking Casodex, whilst mantaining the Zolodex, and that he should get a CT scan to see if the cancer has gone to his lymph nodes.

He is also talking about introducing chemo in the next 6 - 12 months.

We are both really scared! Knowing how treatment varies in the U.S compared with here in the U.K (and that survival rates are much better in the U.S than the U.K!!) are we / the consultant missing anything? Should my husband be trying anything else other than just stopping a treatment (the Casodex)

If there is anyone out there with any advice or any messages of hope, we are a family which could really do with either

Thanks, Julia

Posted 10/17/2009 9:54 PM (GMT 0)
What a brutal piece of news. Out hearts go out to you and your husband. You might look at the thread "Hope for the advanced brothers" about drug trials being done in England that seem to show good promise, perhaps there is a place for your husband there.

Our thoughts and prayers go out to you both.
Posted 10/17/2009 10:22 PM (GMT 0)
Julia, so very sorry to hear about your news. No way to put a good spin on that. There are still options, and there is always hope in a case like this. I wish the best to both of you, and hope you can regain some hope and confidence as you move forward from this point.

Please keep us well posted.

David in SC
Posted 10/18/2009 1:52 AM (GMT 0)
Julia, Sorry to hear the bad news. This is not what any of us like to hear about a PCa brother. I can't offer any advice but, I can say prayer for your husband and you.
Posted 10/18/2009 3:43 PM (GMT 0)
I to am sorry to hear this news. Yes there are plenty of options at this time for you to consider. Take time to educate yourselves and most of all stay positive. I am still a firm believer that attitude plays a huge roll in our healing.
I to will pray for you. Please stay in touch with us, we care very much for your well being

peace and love
dale
Posted 10/18/2009 6:17 PM (GMT 0)

Thank you all for your good thoughts and prayers, they are much appreciated and welcomed by us both.

The trial going on in the Uk does sound promising, but I think it is for people who have already had chemo and where that is no longer containing the cancer. It might, hopefully be available further down the line when the time comes.

Can anyone explain the rational behind stopping one of the hormone treatments? It seems like a backward step to us but we didn't say too much during the consultation as we were both in shock.

I am soo with you about attitude Dale, I have always been an irritatingly positive person, but Rick is the opposite (it works pretty well most of the time ) but right now, I am finding it difficult to be positive for him as the consultant did paint quite a bleak future

Thank you all for caring

Posted 10/18/2009 6:56 PM (GMT 0)
Missy, it might just take some time to take in the bleakest portion of the news and let it fully absorb. People absorb and resolve bad news in so many different ways. Once that is done, it will be easier to look out again and see what options there are, or might be available.

Just feel so bad for the two of you. But as the advanced brothers here at HW will tell you, never give up hope.

I sincerely hope a solution can be found for your husbands situation.

David in SC
Posted 10/19/2009 12:14 AM (GMT 0)
There is a great book that I would like to recommend. It is called "A Reason for Hope". It makes sense out of our battles with cancer. If you would email me your address I would gladly send you a copy. I have a Christian Cancer support group called Champions of Hope and that is the book I use.

peace to you
Dale
Posted 10/19/2009 12:25 AM (GMT 0)
Look into alternatives like these, that can and do work even on hormone refractory patients (how long and how well varies like the craziness of PCa to begin with). You might not want to jump into chemo at this time, perhaps. Your possible choices and these are just a few of many that do exist:

#1-Emcyt(will have some side effects to deal with),
#2-Estradiol patches (cheap, side effect minimal),
#3-DES (cheap, effects can be minimal)
#4- Ketoconazole (has some side effects, usually works for some period of time)
Do google search for hormonerefractory PCa (Dr. Strum has a website listing many things)

Dr. Fred Lee uses Emcyt on his own body, as a PCa patient (fyi)
Dr. Premoli (Argentina-used Estradiol patches on many patients, with good results, no clots)
If you want to know alot more about DES, send me an email, click on my name (zufus).

Get ready to fight and you can have quality life along the way.
Posted 10/19/2009 4:07 AM (GMT 0)
Julia, rotten news.  You and Rick are on my prayer list.

You said, " I am finding it difficult to be positive for him as the consultant did paint quite a bleak future." I don't know what the situation is in the U.K. but here in Canada you can't buy a laxative without side effect warnings that would scare the bridle off a Trooping The Colours Horse. When I went in a few years ago to have a wisdom tooth out I asked the lady at the desk if she had the ambulance on speed dial the warnings were that dire. While it would be wrong not to take the consultant's warnings seriously, as difficult as it must be to do you also probably need to put them into context. And, once you do that, I suspect a positive attitude will be easier to adopt. That said, I can't imagine how frightening and upsetting this must be for you both.

I'll be watching for your update post.

Sheldon AKA Sleepless
Posted 10/19/2009 3:17 PM (GMT 0)
Hi Julia,
Along with what others have said, we send our love and prayers as well. After Casodex, if I went that way, I was looking into Keto and Nilandron. Also a clinical trial would be a good course of action. As you said many won't be offered until after Chemo, but perhaps early Chemo in worth a look as well. Stay positive dear, there is still more things to do. And as always, stay close...

Tony
Posted 10/20/2009 4:19 PM (GMT 0)
Hi - please ask your doctor about trying Ketoconazole.  My husband has been on low-dose Ketoconazole plus Hydrocortisone for over a year now after PSA began to rise on Zoladex.  His PSA has fallen to the lowest level of any treatment and he has few if any side effects. 
Posted 10/20/2009 6:53 PM (GMT 0)

Oh thank you all for all your advice, practical and emotional. It means so much. I have made notes of all the treatments etc mentioned by everyone and will be sure to check them out.

Dale, I am one of your Facebook buddies so would be grateful if you could send me that link.

Your kindness and support is invaluable, all of you

Julia

Posted 10/20/2009 7:27 PM (GMT 0)
Julia,
I don't have any advice to offer but to let you know that I will be praying for your situation. I had my first psa drawn yesterday (Post davinci Surgery) and am awaiting the results.

Larry
Posted 10/20/2009 7:55 PM (GMT 0)

Hoping all is good for you Larry, waiting is the hardest part - thank you for your kind wishes, take care

Julia

Posted 10/24/2009 6:08 PM (GMT 0)
Hello Miss Julia,

I do not, unfortunately, have any advice for you but I came across an interesting post on another PCa website. There is a company in the UK looking for volunteers for a clinical trial to try a vaccine that may have some impact  on tumorous cancers. The company is Genelux. Thier website is Genelux.com and from there you may access the clinical trials. Look for GL-ONC1. As I understand it they are actively recruiting for this trial right now. I do not know if this of interest to you or your husband but thought that I would pass along the information.

Best of luck to the both of you.

Don

Posted 10/24/2009 6:46 PM (GMT 0)

Thank you Don, I will check out the website right away.

Just wondered if anyone can tell me why the consultant should decide to stop one of the treatments (Casodex) is it supposed to confuse the tumours into submission or something? Not quite clear in my head about this.

Cheers, Julia

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