advanced prostrate cancer with mets

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 8/19/2007 5:42 PM (GMT -7)   
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

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/19/2007 6:33 PM (GMT -7)   
lifeline,

Again, welcome.

Your dear husband has been through so much and you right along with him. Your pain and fear are tangible in your post and I hardly know what to say to you.

It sounds as if the side effects from the radiation are what you were told they would be. Is he considering postponing the Zometa due to the radiation side effects? Metastasized pc to the bone is beyond extremely painful, so his fear of it's return is real.

I wish I knew how to answer your questions but I'll have to leave that to better minds than mine and fortunately some of them reside here.
I hope you have family though I know from experience you can't always say everything you need to say to them. Please know that we are here for you to talk to, no matter what you have to say, we can hear it all. I'm glad you're there for your husband. Try to take care of yourself, too.

We here offer you both our support and encouragement...you have that a hundred fold.
This is an important post, lifeline, there will be replies.

Susan

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 8/19/2007 7:23 PM (GMT -7)   
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)


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 8/19/2007 8:10 PM (GMT -7)   
Lifeline-

Send a quick e-mail to myman(edit) she has some info for you.

-Gordy
 
 
 
(edit) click here..> myman
 

Edit: e-mail address will be edited/masked for your security ~ please go to link below   

Click Here and Refresh…once page is opened.>>>>  ****E-Mail Addresses for Members Only


 

 

Post Edited By Moderator (bluebird) : 10/19/2007 6:43:04 PM (GMT-6)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 8/19/2007 8:21 PM (GMT -7)   
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
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started .10 ml Tri-Mix on 8/7/07.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 8/20/2007 12:35 PM (GMT -7)   
Lifeline,

You and your husband and your family are in my thoughts and prayers.

The two of you have come so far and overcome so much, it is awe-inspiring.

A couple fighting such a battle for so long can strain almost everything:
   friendships, finances, patience, and countless little things most of us take for granted.

A small community in Canada?  This site is a good refuge for you. 
Please let us be a lifeline to you
Let us hear about your small victories, your daily challenges. 
Say anything.  Ask anything.  Some just let their emotions out.  Some ask complex questions. 
Some tell jokes to make us smile.

I learn something every day here, both about the topics and about myself.
However, the resource here is not just information.  You have found a group of informed, kind, and caring people that will be here for you.
Many members here, like myself, have found friends we can count on - in subject matter that is not really "supper-table-conversation."

May God's Love be with you, always - in the Son!

CCedar
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 8/20/2007 1:41:44 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/20/2007 2:33 PM (GMT -7)   
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


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 8/20/2007 4:20:32 PM (GMT-6)


whispers
Regular Member


Date Joined Nov 2006
Total Posts : 44
   Posted 8/20/2007 3:16 PM (GMT -7)   
Lifeline-
Your husband and you have certainly been through a lot. Thank you for sharing with us and I hope that in some way, we can help. If nothing else but to listen, offer support, just be here, and send you our prayers. You will definitely be in my prayers.
I am battling advanced PC with my 62 year old dad. I believe he is hormone refractory. He had three mets that had spread to the lymph nodes between his kidneys. He did the Ascent 2 clinical study with the high doses of Vit D. He did well with it..and after 7 months of chemo-the cancer mets showed as all gone. That was 8 weeks ago. Psa was 0.3 at the end of chemo...and has already risen to 1.5. This nasty stuff will just not stay gone. But...we have to keep the hope up and keep trying to find something to help. I have heard many many stories about men given a small amount of time to live with this..and then making a huge recovery and still being here many years later. I certainly want and pray for that for your precious husband and my precious daddy. We have to keep trying.
Stay with us...please keep sharing. It is so important to learn from each other and offer support that is so very needed. A big hug to you-
Lisa

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/20/2007 3:20 PM (GMT -7)   
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


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 8/20/2007 4:28:12 PM (GMT-6)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/20/2007 5:15 PM (GMT -7)   
Hello Lifeline,

As you can see you and your husband have support here. You are very much on my heart tonight.

Thinking of you and just wanted you to know,

Susan

lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 8/21/2007 11:49 AM (GMT -7)   
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

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 8/21/2007 2:31 PM (GMT -7)   
Hey Lifeline,

Your husband's low testosterone that is causing his weakness and the change in his character need to be watched. The low testosterone is certainly necessary for his successful treatment but the side effects can be devastating. Some men are not seriously affected but others (like your husband and myself) can have severe symptoms. My low testosterone level is due to a condition that I had prior to having cancer. I did not have HT in my treatment. My doc put me on Prozac for severe depression. It got me through the roughest part of the experience. So please let you doctor know about his change in mood etc.

Thanks for keeping us up to date on you situation. We are here for you...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started .10 ml Tri-Mix on 8/7/07.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/21/2007 5:08 PM (GMT -7)   
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

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/25/2007 8:19 AM (GMT -7)   
Lifeline ,

How is Rod responding to getting back on his meds?
Please let us know how you're doing.

Susan

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/28/2007 7:06 PM (GMT -7)   

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 

 

 

 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 17, 2017 5:24 AM (GMT -7)
There are a total of 2,906,395 posts in 318,953 threads.
View Active Threads


Who's Online
This forum has 158291 registered members. Please welcome our newest member, Bearcat81.
223 Guest(s), 0 Registered Member(s) are currently online.  Details