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Posted 5/8/2011 10:27 PM (GMT 0)
Hello, I am new to this forum and to online forums in general, but having read some of the posts here, I decided that this was a place that might provide some help and support.

My beloved partner was diagnosed with Gleason 10 through TURP in late October, 2010. He had been taking Avodart for several years and his PSA was 56 which should, therefore be doubled to 112. A CT scan was negative, but the bone scan showed two "probable" metastases. At the time, his alkaline phosphotase was negative. He began Firmagon in late December and his PSA fell to 3.9. It and the bone scan remained stable until late April. At this time the PSA had gone to 6 and the urologist said that the bone scan had "exploded." He gave us the "end of life" talk. My partner is Dutch and we had planned to go to The Netherlands for six weeks in July, but the urologist said he hoped that would be possible. The other thing that happened in the lab report in late April is that the testosterone level had gone up from 10 to 25. So, the urologist prescribed 50mg Casodex. Having read Dr. Charles "Snuffy" Myers book, I encouraged my partner to take 150mg Casodex and he is doing this. He also had another injection of Firmagon at this point.

Back in January, we had already made an appointment to see the oncologist on May 25, at which time my partner was to get an infusion of Zometa. When the oncologist saw the bone scan, he had his nurse call to ask if my partner wanted to come in earlier. He refuses to do so and, while he has been asymptomatic, he complained about a sore back this morning which went away when he got out of bed. I should also mention that my partner is himself a physician and so is extremely stubborn and does not want to talk about any of this. In fact, he planning for the future in a rather big way.

I guess my question is whether there are more treatments that might slow down what is obviously a very aggressive cancer, or, if the urologist was right to give his "end of life" talk two weeks ago. Because my partner will not talk about this and keeps acting as if everything is fine, I feel very alone in bearing all the worry and the stress and have tried to inform myself as best I can, but feel now depressed and at a loss (though trying to keep a happy face for my partner). Any information those of you on this forum might have that could be helpful I would be most grateful for and I thank you in advance.

liefde
Posted 5/9/2011 12:45 AM (GMT 0)
hello, liefde, and welcome to HW. sorry you need our community, but certainly glad you found us and joined among us.

i feel bad for both you and your partner. he's in a tough situation, but some of the other advanced brothers here would quickly say its still not a hopeless situation.

i understand your depression, and i can sense your partners denialism, neither one of them are healthy situation. you can work on your depression, but it might be a harder sale on your partner's end of things.

please keep posting here, and keeping us updated on his, and your situation

my best of luck to both of you

david in sc
Posted 5/9/2011 2:10 AM (GMT 0)
For ADT to be effective, you need to get that "T" level WAY down, one way or the other...A single bone met can be attacked with beam radiation very effectively. See a Radiation Oncologist and get it Zapped..

If your partner is going to survive very long, he needs to pull out all the stops and leave no stone unturned in fighting this disease..It's a little too early to throw in the towel just yet...
Posted 5/9/2011 3:19 AM (GMT 0)
Liefde -

I am very sorry to hear about your and your partner's situation. It is very tough medically and also emotionally -- for both of you.

Seems to me the best thing your partner can do for himself is to find the best medical oncologist he can -- someone with particular and extensive expertise in advanced p ca cases. If you can tell us where you are located, someone on this board can likely recommend such a doctor.

There are some treatments that can be used. But really your partner should be getting that advice from an expert oncologist rather than from us here at HW.

Best wishes, Medved
Posted 5/9/2011 12:20 PM (GMT 0)
Sorry to hear about his situation.

There is a new medicine in clinical trials that you might ask your doctor about: cabozantinib (XL184).

In trials, it has helped with some bone scans. Don't know if he could get in the trial.

Good luck to you both.

 

Posted 5/9/2011 2:55 PM (GMT 0)
Thank you all so much for replying and for giving some hope that was all taken away by the urologist.

To answer your question, Medved, we are in the Cleveland, Ohio, area and will be seeing Dr. Matthew Cooney at University Hospitals. He was recommended by the urologist. Although prostate cancer is one of his specialties, I do not know whether or not it is his major one. So, any responses and recommendations would be greatly appreciated.

And again, I thank you with all my heart.

Liefde
Posted 5/9/2011 3:17 PM (GMT 0)
I would consider calling Dr. Eric Klein at the Cleveland Clinic and asking him to recommend an oncologist, or whether Klein himself might be able to help. Best wishes, Medved
Posted 5/9/2011 3:27 PM (GMT 0)
Thank you so much, Medved!

Liefde
Posted 5/9/2011 8:58 PM (GMT 0)
I see a doctor at the Cleveland Clinic who is both a urologist and oncologist.His name is Dr. Andrew Stephenson. He is considered an expert, although he did not respond to an email I sent him once.
Posted 5/9/2011 9:08 PM (GMT 0)
Thank you so much, robertcool. We saw that oncologist at UH once and I don't really know what to think of him (and will know more when we see him at the end of the month) but I knew I had to get some second opinions lined up. How good to have another recommendation. Perhaps I can begin to try to get the urologist's "end of life" talk back farther in my brain.

liefde
Posted 5/10/2011 12:05 AM (GMT 0)
liefde-
I'm so sorry to have to welcome you to this forum, but glad you found us. As you can see from the members that have already posted, this forum is amazing for patient to patient support. Please keep us posted and let us know how we can continue to help!

DD
Posted 5/11/2011 7:37 PM (GMT 0)
Thank you so much Ohio State and Doting Daughter, both for the new contact to explore and for the good thoughts and wishes, and simply for being there.

Being a physician, my partner is both depressed and in denial at the same time. The oncologist at UH in Cleveland had called about a week ago, asking if he would like to come in to get an infusion of Zometa because of the bone metastases. My partner refused and said he would wait until May 25 (the appointment scheduled back in January). I have been trying to encourage him to get the Zometa as early as possible, but he only got angry and insisted that he is a doctor and he knows it takes a while for the Zometa to work and so why do it early. His mind was completely made up. But about an hour ago, he had actually changed it and was going to call the oncologist to see if it was possible for him to get the infusion here in the hospital in which he works (he is a gastroenterologist and his knowledge of prostate cancer and its treatments is sketchy at best and years old). So, now I am hoping that the oncologist will let him have the Zometa here before the appointment in Cleveland so that he can start beginnng to try to help his bones sooner, rather than later.

Again, please know how grateful I am to have found this forum and all of you who have been answering my posts.

Liefde
Posted 5/11/2011 7:57 PM (GMT 0)
I'm married to a physician as well and you know what they say: "doctors make the worst patients". It holds true in my case :) I have found that being married to a dr obviously has it's perks, but there are definitely downfalls. (Including being stubborn) Glad to hear that your husband decided to get the injection early. Dr. Meyers book is a wonderful book and I'm glad you also had a chance to read it. I also find a lot of hope and inspiration from a member of HW and founder of FLHW. His name is David and he has advanced disease. He knows pretty much every trial and PC drug under the sun and would be a great resource. http://flhw.org/prostate-a-cancer-resources.html

DD
Posted 5/11/2011 8:12 PM (GMT 0)
How good to know that there is someone who understands what it is like when the doctor becomes the patient and when he is the closest person in the world to you. Thanks DD and also for David's website. Now I will just have to hold my breath and hope that no new change of mind takes place.

Liefde
Posted 5/16/2011 6:32 PM (GMT 0)
Hi, i may be a litle late catching up with this post but if you husband as not yet received any zometa infusion i would just like to add the following.............I was dx,ed with advanced pc some 7 months ago at a relatively young age and although i did not feel ill in anyway and i am very active i did have aches and mild pains.Ive now received 4 monthly infusions of zometa and if im totally honest it as made some difference.The side effects of Zometa have not been apparent so i would suggest that it is of benefit to your husband.

                                      May i offer you both my best wishes.

Posted 5/16/2011 11:05 PM (GMT 0)
Thank you so much, leeanglo, for the information about Zometa. My husband should be getting it next week and, hopefully, it will make him just feel generally better.

And please know that I send my very best wishes to you, as well.

Liefde
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