Introducing myself, and how long does hormone therapy last?

Hi everyone, I've been reading the forum for a few days and I want to take the big step of introducing myself. At the moment, my wife and I are very alone in the midst of all of this, and reaching out to a support group seems like the thing to do.

I'm 47 years old. All last spring and summer, I was getting increasing bone pain in my back and hips. X-rays showed herniated disks in my back so all I was doing was taking Advil and going to a chiropractor. Eventually the pain got so bad I could barely walk across a room and while I was waiting to get an MRI, I fell down and fractured my right femur. At the hospital, they diagnosed me with metastatic advanced prostate cancer, stage IV. I spent several months in a wheelchair, on morphine, recovering from the fractured bone, not to mention the shock of finding out I had cancer.

My PSA at the time of diagnosis was over 5,000. There were lesions all over my spine and hips as if someone had spray painted my skeleton. Part of my hip bone was missing and turned to tumor.

I was put in lupron/casodex and xygeva for the bone, and gradually got "better." My PSA dropped dramatically and now nine months later it's down to 2.3. I have side-effects from the lupron but I'm not complaining. I had no surgery, no radiation, and the parts of my bone that were damaged from tumors actually restored themselves. My bone doctor said that he was amazed at how well the bones were healing.

I have a million questions, and I only see my oncologist about a half hour every two months. I have randomly googled and gradually got to know a lot about the "pipeline" drugs and the presentations at this months ASCO conference in Chicago. I compulsively search for signs that drugs for CRPC are improving and will be available in the future when I need them (and also for everyone on this forum if and when they need them).

In general, I'm doing well physically, but the mental and emotional toll has been brutal. Two months ago, after several months of optimism, I melted down and felt depression and anxiety. It's been a long two month climb back up to optimism, largely because of what I read about the ASCO conference and reading about pipeline drugs.

My oncologist says that there's no point in talking about therapies for me after Lupron because by the time I need them, the whole playing field will be different. He said that he has stage IV patients in his practice who have been on hormones for 10 years. He told me that the average time till hormone resistance is about 5 years. On line , I see reports of the average being 18 months, or 2.5 years, or 2-6 years. I also see doctors boasting that they have patients who have been on Lupron for 10 years or more. I also see posting by men who say that hormone therapy only lasted a year for them before they had to move on to chemo or Provenge.

I realize I'm at the beginning of my journey, and some of you on this forum have been through much more than what I'm describing, but I have to say that I've been haunted by the memory of knowing what it feels like to have my bones covered in tumors and having them fracture as a result of the cancer. I don't know if anyone on this forum has experienced that yet, but all I can say is: "Thank God I didn't know what it was at the time." And when I did know what it was, I was on heavy doses of morphine to mask the pain.

I guess my first question for the forum would be: what are people's experience with Lupron /Casodex? I know it is not a cure, and it cannot even hold off the cancer for a life time, but is it reasonable or even responsible for my oncologist to tell me with total confidence that it will last for five years. Another doctor I spoke to has said, "Oh, ten years, easily!" Then he repeated for emphasis: "Easily!"

I would be happy to hear that it will last for three years, for I'm confident that the drugs in the "pipeline" will be worked out to a degree that sequencing them can extend life by many years. I realize that no one knows and every person is different. But it would good to hear from men whose advanced cancer has spread all over their bones and have had good experiences with Lupron/Casodex of at least a few years.

Forgive me if any of this sounds naive, but like everyone else, I never thought this would be happening and I'm just at the start of my education about it all.

I have to end by saying that my wife has saved my life as much as the lupron. She got me to the hospital, stayed with me non-stop for weeks, and then nursed me through the long winter of our discontent. She has planned remarkable anti-cancer meals and has done all the research into nutrition to ensure that we are doing our part to fight the cancer over and above the hormone therapy. We love each other very much, and since we just got married two years ago and we are only in our late forties, we want to pull through this so we can enjoy the rest of our lives together.

I hope I have not come across as naive. I'm new to this.

John,

I want to welcome you to our corner of the world (Internet) at HW Prostate Cancer. That was quite a positive step to join our brotherhood/sisterhood here. You will find support, you will find answers, and you will find comfort among us.

Your story up to now, staggers me to say the least. You have truly been to hell and back. The story of your bones "mending" truly asontishes me, I have never heard of that happening before as you describe.

There are plenty of guys here on the Lupron that can answer your questions more directly. I, myself, have never been on any of the HT drugs, so I can't speak first hand. I have dealt only with surgery and radiation, both which left me with a lot of severe issues.

I am glad you are doing as well as you are. Kind of a miracle story going on with you. Please feel welcome here, and pitch right in when you are ready.

Look forward to following your future posts, and wish you and your wife, all the very best ahead.

David in SC

Thanks Southern Comfort and Purgatory. I have to add that there are still extensive lesions on the bones. They haven't been cleared of the cancer of course, but there was dramatic improvement and shrinkage of tumors.

I did talk to Memorial Sloan Kettering and Fox Chase and both centers told me that my current therapy seems to be appropriate and what they would recommend. Over the next few months I'll check out some other specialists.

I guess it's still early in the game for me, even though I'm metastasized.

I was started with XGeva but after six months I started to get bone pain and weakness. So they started giving me Aredia which had kept the bone pain down to almost none. However, the XGeva was a thirty second needle shot while the Aredia is a two-hour infusion which gives me fever chills for 48 hours. I'm told the side effects of the Aredia will wear off after a month or two.

The makers of aredia say that you get the chills the first month or two then they go away, but we'll see. I also forgot to mention that since this whole thing started I lost 80 pounds due to an aggressive diet (I was 306, now I'm 225), and I'm a lot bonier than I was before, so sitting for long periods makes my bones hurt. I misinterpreted those pains as new lesions and progression of the disease.

Thanks Ziggymonster. I just heard about ARN-509 for the first time yesterday. It is very comforting to know that there is good stuff waiting beyond HT. However, when you look at each individual trial, they talk about median survival advantages of 4 months or so, which always is hard to interpret and often scary. A friend of mine said, "I read about Provenge and it only lasts for 4 months!"

Hopefully trials of new combinations of these therapies will come up with long-term survival of years.

Welcome to the club no one wants to join John..

There are about 100 Medical Oncologists nationwide who SPECIALIZE in treating advanced PC. They sometimes work outside the envelope but they are very good at what they do..There is a book, "Invasion of The Prostate Snatchers", it's mostly bunko (my opinion) but it has an appendix that lists these 100 specialists. You can get a copy on eBay for a few bucks..Ziggymonster mentioned a few of them..

The fact you had such a huge response to the Lupron means the vast majority of your cancer has been killed by being deprived of testosterone. What little cancer that remains is in a state of shock, but, unfortunately, it will recover slowly and continue it's expansion..There are other weapons coming online that may stop that progression..

While Lupron is usually very effective at lowering testosterone, it does not work perfectly in all men...be sure to have your "T" level checked to be sure you are at castrate level and you stay there...

If you are not aware of it already, there is a term, PSA doubling time, that you will become very familiar with..two small things have been shown to increase that time period. Pomegranate juice/extract and common aspirin seem to help. Some of those doctors mentioned above may also recommend a more extensive list of dietary changes and additions..

If you have not read Patrick Walsh's book 'Guide to surviving prostate cancer", it will give you a complete overview of what you are facing and the last few chapters covers advanced cases and talks about things no one wants to talk about...Available for a few bucks on eBay...

Another option available are clinical trials..You may have to travel to a big treatment center, but you get state of the art treatment...You have to keep a positive attitude, do the research, make the phone calls, separate the wheat from the chaff, don't take "no" for an answer.

The best of luck to you, don't give up the ship!

I see I'm about 5 hours away by car from Snuffy Myers so I'm thinking of doing a consultation with him.

I'm definitely excited about my PSA plummet. It kept me optimistic for many months. But then the horrible term "hormone refractory" entered into my life. So gradually learning more and more about other therapies beyond hormones and chatting with men who are experiencing those therapies will be very good for me and I hope that along the way I can contribute to someone else's comfort as well.

Has anyone heard of BIND-014? It sounds almost too good to be true, but several years from maturity.

Hi Rodney, thanks for the encouragement. The big difference between you and I might be that one day I sat down the wrong way and a bone snapped. I'm praying that doesn't happen to you since it isn't fun, to say the least. Hopefully neither one of us, or anything else on this forum, will ever experience that again. The only good that came out of it was that I got to stay home form work for six weeks!

I agree that the pipeline drugs are exciting to read about. It sounds almost like a miracle. That's why goggling around and seeing survival predication from even two years ago is a bad thing. Our chances of survival right now are greatly increased and no one can yet predict by how much, but I suspect it's a significant amount.

What are they giving you for bone damage?

The docs are going to start me on Zomita Aug. 1st.

Rodney...

I'll let you know, but look, don't wait for me. Talk to your Doc about it as soon as you get the chance. As great as this forum and the people on it are you'll still get the best advice from your Docs because only they know all the details about your particular case.

It looks like you and I are pretty close to being on the path as far as our disease goes. keep in touch. It's kinda nice to be able to talk to someone who's situation is so similar.

Rodney...

Thanks for the info Bud. Aug. 1 is gonna be one of those marathon days at the VA. Labs, Oncology, Zomita, Eligard, plus the Atlanta traffic to and from. It's gonna take an extra large bag of M&Ms to get through it, and maybe even a fresh pack of Oreos held in reserve.

Best wishes everyone.

Rodney...

Lupron Legionnaire,
Sound information and data. And welcome. I write however to let you know why I edited your post. I came here myself as a person in the ministry and very vocal Christian but I had to learn to tone it back for the board as not everyone agrees with my way of thinking. For the purpose of general prostate cancer discussion and to keep the boards flowing well, there is a rule about overtly religious discussion. It also applies to politics and other things. If you'd like to chat offline you can contact me through Email and I can explain better if you would like. Working with the newly diagnosed and the advanced cases is a great ministry, but doing so in a way that is acceptable to all is a skill. And not always an easy one. I hope you understand.

Peace and goodwill to all...

Tony