advanced prostrate cancer with mets

thank you myman for your help. my husband is 52 and was diagnosed in may 06 with advanced prostrate cancer with mets in his pelvic area, most of his spine, some of his shoulder and upper arms and some chest. at that time one lymph node near stomach was affected. he was given 2 years to live.  we were told rather bluntly and given no hope. since that time he has been on lupron, casodex, proscar.  initially his psa was 900. due to pain in hips and back started on radiation and to date has had app. 6 sessions.  in nov. 06 his psa had dropped to 6.9  unfortunately it started going up and in april 07 was 60. suddenly he experienced extreme pain (10) level and i took him to the hospital where he was given morphine. his oncologist sent him for xrays and another bone scan. in may 06 his psa still climbing was 290. dr. started him on ketocotzole and hydrocortisone with 3 week infusions of zometa for his bones. dr. scheduled appointment for him with chemo dr. at this point the pain seemed to slowly vanish and he weaned himself off morphine.  we met with the chemo dr. in june 07.  psa was now 404 after being on the new drug for 1 1/2 months. dr. wanted him to start chemo immediately at which point my husband blew up and yelled at the dr. to stop shoving chemo down his throat. he insisted on being given one more month to see if the drug would fully kick in and work. july 07 psa dropped to 104. couldn't believe it.  my husband had his latest dose of radiation aug. 8 07 for new lesion to upper spine. they did an area of 10 inches long and 1 1/2 inches wide.  he has done nothing for the last week but throw up, sleep, he's extremely fatigued, and he can't eat. every time he evens drinks water, he later throws up. they said this might happen and he would be tired for a couple of weeks but i'm getting scared. the hospital postponed his last infusion of zometa due to his radiation but he is due this coming tues.  he's worried that if he postpones it another week his bones will start hurting again.  the latest bone scan showed some improvement with his bones. does anyone know anything about this and the radiation affect. thank you so much to the member who answered another member and mentioned that he knew a few men with prostrate cancer w/mets who had outlived the life expectancy doctors gave them. god bless you. up till now no one has given us hope or encouragement and it's hard to stay positive when dr. only give you a death sentence. my husband is my life.  thank god for this site  lifeline

Lifeline- I am by no means an expert. I consider myself to be standing in quicksand and it's up to my chin. My PCa, which I thought I had beat because my PSA has been undetectable for 2 years, has spread to my pelvis and is all over my lungs (hence the quicksand simile). I have one bit of advice for you. M.D. Anderson Hospital, which is part of the University of Texas, in Houston, has been named the best cancer hospital in the country by US News and World Report for the 7th time. I was fortunate to have found out about it in June and went there at the end of July. The facilities and the doctors are mind boggling. The little bit of hope I have, I got from knowing that they exist and are on my case now. I was contacted by United Resource Networks (URN), a division of United Healthcare (my health insurer) and advised that I could go there or to any one of 22 other "Cancer Centers of Excellence" around the country at reduced rates for travel, hotel and meals. I can't connect to their site right now, but the URL is https://www.urnweb.com/gateway/public/cancer/cancer.jsp If for some reason URN doesn't work out for you, you have to contact M.D. Anderson directly. Their URL is http://www.mdanderson.org/ I've learned that there is no such thing as getting enough medical opinions, and I now believe until one "experiences" M.D. Anderson, one hasn't exhausted all possibilities. You also have to read up on Michael Milken and the diet he adopted after being told to get his affairs in order because he had 10 to 12 months left. That was, I think, 12 years ago, and he's still going strong. My wife has adopted his diet for me and I'm sticking to it. Keep a stiff upper lip and never, never, never give up. -Gordy Post edited to activate links….   Post Edited By Moderator (bluebird) : 8/25/2007 9:13:41 PM (GMT-6)

Hey Lifeline,

My heart goes out to you and your dear one. While my PCa is stage 2 and seems to be under control and I am certainly no expert on advanced disease, I had to watch my father succomb to this disease. He had a lot of pain. He was stage 4 when diagnosed and being 81 years old decided to not treat it. But this was 20 years ago and if he had the new treatements that are available today, I am sure he could have lived longer and endured much less pain. Sorry to start with a sad story but the object is to assure you that there are many options available today and more on the way. We live in an era of great advancement and great hope in the treatment of cancer.

Your openess and willingness to discuss your plight are indications of the inner strength that we need in this fight. You have found us. Now let us comfort and help you with the many varied experiences that we can share. Never stop searching. Never stop asking question. Never, never give up.

Now a couple of practical suggestions.

Keep a journal of the things that happen, things that change and questions you have reagarding your DH progress. It is impossible to remember everything in the short time we have for an office visit. And we found that we had to write down the answers we got in those visits or we would forget them too. Office visits are tense times. We go there looking for the "magic bullet" that will make eveything okay. We have to use them to gather information and writing things down keeps us on track.

Take time for yourself. Your are essential to you DH recovery and you need to recoup your strength and sort out you own thoughts. This is not selfish on your part. You are really collecting and replenishing the most valuable weapon that you have in this fight. That weapon is your strength.

This insidious disease takes many unexpected turns and affects each of us in different ways. Read about Michael Milken and others that have had dramatic turn arounds. We have guys with stage 3 and 4 disease here on this forum that have much to offer. Read their posts (as I am sure you have done). Ask them questions. Pull from their strength.

Most of all dear one, please stay with us. We need you as much as you need us...

Jim

Hi Lifeline,
I know these times are difficult. I can only tell you that we will continue to believe positive things for you and your husband. While this attempts to break your will to stay positive, I can tell you that I have done much research on the this disease and there is still hope to have a return to remission. I have read about many cases that were sounding like what your husband is enduring, and yet they are still around after many, many years. In fact many have indeed returned to remission. Gordy's reference to Mike Milken is very true. He had mets in 1993 and is still looking pretty darn good. You can find his story on his website at:

www.mikemilken.com

Your husband is in my prayers and with true concern I promise to keep a positive thought process going for you.

Tony

Lisa,
I extend my well wishes to you and your father as well. Again, all here are great people and we can all think good things for one another.

God Bless,

Tony

thank you so much everyone for your replies, web sites to try, your stories and just your compassion and caring. of all the sites i check i have never come across one there has made me feel as if i was right beside you with someone holding my hand. thank god i found this site. just came back from seeing our oncologist and didn't know until today that my husband stopped taking his meds because he was throwing up. dr. says that the hydrocortisone he is on controls something in his body and he is almost positive that this is why he continues to be sick. told him to restart meds today with a stronger dose of hydrocortisone to kick start it and he should see a big difference is 24 hours. his psa is still dropping, now at 68 and his results from the stomach and pelvic ultra sound came back okay, no new involvement (whew) we both dreaded the results.  it's hard to take time for myself. i have to continue working full-time which at this point is a nightmare and more stress, and i feel extremely guilty if i need some time for me, even an hour after work. we live in the country and my husband is so lonely with me gone all day that he looks forward to when i'm home. some days i feel as if i'm going to fall apart and not get back up.  i will try M.D. Anderson's site but because we are from Canada and money is tight, i doubt that it would do much good. going to the states unfortunately not in our financial reach so we will try what we can from here. my husband feels the loss of his own personal strength ever since being on Lupron which he is still on. With the testosterone gone he feels like he is weak. his character now is so different from before ( he was strong emotionaly and a fighter) now it's difficult to really get him trying to work with self imagery and positivity. i wish that i could do these things for him. you have all been a god send and i wish the best for you all.  again thank you from the bottom of my heart for your strength, words of encouragement, comfort and just knowing that i can share and talk to you. i'll keep you updated. lifeline

Lifeline,

So glad to read your post. You got some better than expected news today...gives you reason to hope. PSA dropping, no new mets and (fingers crossed) a solution to the sickness.
Jim knows about the low testosterone - a call to your doctor may be just what's needed.
We say to take time for yourself and of course that's easier said than done. It may have to be a little bit here and there but it's imperative for your well being. You've got so much going on in your life that any time that you can grab is something.
Pllease continue to keep us posted. As you can see...we'll be looking for you.

Susan

Partial quote taken from new thread started by lifeline on 08-28-07     lifeline's husbands update Helping to keep her journey together during a very stressful time. See reply postings by clicking on the like above..... hi everyone: The last two days have seen a great difference in my husbands condition. his energy is mostly back, his pain in upper back is only occasional and he is fully on all meds.  huge difference.  finding you folks has been a huge blessing for me. thank you for your strength, understanding, hope, compassion, caring, sharing, and not judging. just been through some of the judging with a couple of family members. except for having to go to work which i sure wish we could financially afford for me not to, i haven't left my husbands side. an overnight camping trip with my oldest daughter, daughter-in law, and grandchildren had been planned for one night. two family members asked me how i could think of going when my husband was sick. i felt so guilty for even thinking about this overnight trip that i cancelled. at that point, i lost it and went where i could be alone, (we live in the country) yelled, cried, threw things and punched trees. i was so suddenly angry at the cancer, angry at not being to go on this one thing i had looked so forward to, and then the immense guilt i felt for wanting to do this was overwhelming. my husband wanted me to go and take one night for myself. i thought, he is sick and i'm being selfish for being angry. has anyone else gone through this. this is the first time this has happened to me. also, i feel like i'm so wrapped up in being his caregiver, that i've lost the ability to be his wife. this just hit me yesterday. how do i put this cancer aside for awhile and just be a wife. i'm so consumed with doing everything i can to help him stay alive and beat this that i've gotten lost in it. if anyone has any suggestions they are appreciated. anyway, keep up the fight, stay strong in your battle, each and everyone of you are in my prayers each night and if i can contribute anything that will help someone, i will. you folks are my lifeline. sorry if i sounded full of self pity. not usually like this. god bless all of you.  lifeline