Advanced prostate metastatic cancer/stage 4

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tednsal
Regular Member


Date Joined Sep 2012
Total Posts : 198
   Posted 9/22/2012 10:39 PM (GMT -6)   
We are under the assumption that we are now in a two year life expentancy.  Diagnosed with bone involvment in September 2011.  Did Provenge, nothing, now on Taxotere.  Going to have the last of a four round therapy next week.  Bone and CT scans scheduled for first week in October, if tunors show no growth, will start 2nd four round again.  Just want to know what to expect during this last possible year of life.  We are both very fragile, but need to know what our expections should be and could use some input from folks in our same situation.  Just as a FYI, diagnosed in November 1999 at age 55, had surgery, radiation, Lupron, Casadex, Provenge, Xygeva and now on Taxotere. 

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 2269
   Posted 9/22/2012 11:25 PM (GMT -6)   
This forum and it's members tend to shy away from end of life situations and issues...They seldom go very far before an Administrator intervenes..But here goes..

From diagnosis, you have made it 13 years and perhaps have a few more to enjoy to what ever extent you can enjoy them..All of us face this same reality, we all die, some a little sooner, some a little later but nobody gets out of here alive...

So my only advice would be make the best of whatever time you have left. Knowing these treatments offer no cure, you might reach a point where the treatment degrades your life more than the disease and active treatment should cease..This is a decision only you, your family and your doctors can make. It's really too personnel an issue to discuss with strangers on the internet...

The best of luck to you brother, fight on....
Age 70
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5,
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA <0.1 10/'11, <0.1 2/12, <0.1, 4/12, <0.1

c.c
Regular Member


Date Joined Jun 2012
Total Posts : 62
   Posted 9/22/2012 11:34 PM (GMT -6)   
Dear tednsal
hi my husband had same dx back in 2008 age 56.....gleason 9
now about your journey there are alot more options available since 1999 YAY!!!!
my husband did taxotere then jevtana then zytiga and is now in a clinical trial for the mdv3100 which will not help him but will hopefully help you.Please don't think of this as your last year of life we thought that also 4 years ago and noy even your doctor can say how long you have its up to you ... my husband didnt do well on taxotere or the jevtana but he did amazing on the zytiga !!!!it worked for 7 months :) no SEs on it either !!!:) what is your psa level and what is your gleason score ? there will be others who will answer soon ... there is alot to learn here and everyone is willing to give out their secrets so to speak on nutrition how to help with SEs from chemo and radiation I wish you all the best and wish you didnt needed to be here but glad you came to seek assistance in your fight with the beast
Hugs and prayers cc
dx 9/2008 stage 4 bone mets in rib and hip age 52 @dx age 56 now gleason 9
2010 mets rib hip spine
2011 mets. rib hip spine shoulder legs
taxotere jevtana zytiga /lupron/casadex
psa6/2/12-78.04-5/13/12-32.48-4/22/12-19.32-3/26/12-16.04-1/31/12-9.11
7/24/2012 mdv3100 trial psa202.1-8/20 psa 153.07

tednsal
Regular Member


Date Joined Sep 2012
Total Posts : 198
   Posted 9/22/2012 11:34 PM (GMT -6)   
Fairwind....didn't want any suggestions......just wantd to know if someone out there is in the same situation or further along and what were they experiencing.  We are wanting to know what to expect physically.  We are in a place where we are not familiar and wanted some assistance in knowing what will happen with this disease physically, organ shutdown, numerous fractures, pneuomia, etc.   
Thanks for your kind words......  

c.c
Regular Member


Date Joined Jun 2012
Total Posts : 62
   Posted 9/22/2012 11:40 PM (GMT -6)   
although I agree with some of what fairwind said I do not agree with all of it !!!!There is not any where else to go other then here and get a straight answer !!!! not even your doctor!!! Although the treatments may not offer a CURE they do extend your life and it might just be long enough for there to be a cure for you :)but FAIRWIND is RIGHT the CHOICE is for you your family and your doctor to make ...i don't know what I would of done the last several months with out healingwell and the support and sharing and the heart felt words from the people on here they are amazing !!!
cc
dx 9/2008 stage 4 bone mets in rib and hip age 52 @dx age 56 now gleason 9
2010 mets rib hip spine
2011 mets. rib hip spine shoulder legs
taxotere jevtana zytiga /lupron/casadex
psa6/2/12-78.04-5/13/12-32.48-4/22/12-19.32-3/26/12-16.04-1/31/12-9.11
7/24/2012 mdv3100 trial psa202.1-8/20 psa 153.07

c.c
Regular Member


Date Joined Jun 2012
Total Posts : 62
   Posted 9/22/2012 11:49 PM (GMT -6)   
Oh and my husband is in the late stage of mcrpc and we just found out friday he has cancer cachexia....so we have run out of time for a cure for us but pray that the mdv3100 will be a big help for finding one :) when you get to this point its all down hill from here ... this is when we should be going on our trips but he is not able ... so if you want my advice live life to the fullest like this is no tomorrow and let everyone know you love them and do some things you have always wanted to do ... my husband will not get the chance to do a bucket list we were to busy fighting this monster and thought we could win !So please fight your fight your way and have no regrets about doing it PARTY LIKE A ROCK STAR!!!! and dont look back
cc
dx 9/2008 stage 4 bone mets in rib and hip age 52 @dx age 56 now gleason 9
2010 mets rib hip spine
2011 mets. rib hip spine shoulder legs
taxotere jevtana zytiga /lupron/casadex
psa6/2/12-78.04-5/13/12-32.48-4/22/12-19.32-3/26/12-16.04-1/31/12-9.11
7/24/2012 mdv3100 trial psa202.1-8/20 psa 153.07

tednsal
Regular Member


Date Joined Sep 2012
Total Posts : 198
   Posted 9/23/2012 12:47 AM (GMT -6)   
C.C. I do so feel for you, really I do. I hate the nights, because that is when my body and brain have to lie down and they are not occupied with work or decisions, and can think, that is when I usually cry myself to sleep. I am hoping that our next step would be Zytiga or the new one MDV3100 (Xtandi). My husband is pretty strong in the mornings but by late afternoon, he is wore out. Can only sit in his recliner. I guess that is to be expected with the chemotherapy, but this also hampers us from going or doing much. His oncologist said no strenuous work while on the Taxotere, so we are waiting to see if another four round session is necessary and then possibly we can get in our RV and do some traveling.
I can say be strong, but I had considered myself strong, but I am an absolute "wimp" now, I cry at the drop of a hat, and I'm dropping the hat most of the time. So all I can say is cry if necessary, and I don't know if you can get it all out of your system, how can one, life is a wondrous thing but death is good, possibly for the patient but not for the living. I do hope that we have more time, but each day is a blessing to me now. We have been married for 47 years and I so wanted to make it together to our 50th, only with God's will can we do that.
Current age: 67
PSA age 55: 10.9 (11/1999)
Gleason score: left: 3 + 3 =6 right: 4 + 3 = 7
Radical Prostatectomy at Johns Hopkins 04/00
Radiation: 37 sessions
From 05/00 to 11/06 PSA stayed at 0.1 - Lupron until January 2004
PSA: 0.16 - 09/04 (Back on Lupron injections)
PSA: 2.1 - 09/09 - Casadex & Lupron PSA dropped
PSA 4.3 - 09/11 - Bone & CT five spots (skull, ribs, illiac & sacrum)

Raddad
Veteran Member


Date Joined Jul 2011
Total Posts : 1857
   Posted 9/23/2012 6:56 AM (GMT -6)   
Tednsal

As my dear friend C.C said, dont give up the fight. Zytiga and MDV3100 are just two of the newest treatments available to your hubby.

Another dear friend Susan R once posted.

Put the PCa to the side today (as much as possible) and take the day to share your love and life with another person. Do something for yourself that you greatly enjoy. We have been touched with a disease that can be terminal, but not today, not for us. We fight and the best fight, the way to scream at the disease "YOU DONT CONTROL ME, I AM GONNA KICK YOUR CANCER A**!" is to live the best life you can for as long as you can. We all have bad days, but today doesn't have to be one of those, lets all live the best day we can. Enjoy life, take control of us, put the cancer away today and do something special. Go fishing, cuddle with your spouse, play with your children/grandchildren, take a walk, go bowling, call your siblings....whatever it is. YOU DESERVE THE BEST DAY TODAY Embrace your life, just for today, it is only a beginning.

Married for 47 years - speaks so highly of you two.

Our love, best thoughts and prayers that you do in fact celebrate your 50th anniversary.

Hugs gently

Bud and MsBud

We will beat this crap!
65 - April 2013
A Better Man tinyurl.com/28e8qcg
12 7 11 - 1447 (It's just a number! )
Scans showed active prostate cancer widespread in bones
HT treatments & Zometa for bone
31 10 11 - 46.6 Cheers!
25 1 12 - 75 - Crap
22 2 - 99 - Restarted Casodex
22 3 - 149 - Start Zytiga
25 4 - 113 | 22 5 - 66 | 19 6 - 38 | 19 7 -34
21 8 - 27.4 | 21 9 - 36.8 meh next month will go down!

SpecialLady
Veteran Member


Date Joined Nov 2011
Total Posts : 841
   Posted 9/23/2012 7:01 AM (GMT -6)   
Hi there, you still have Zytiga, MDV3100, ketokonazol, Jevtana, all the medications that your husband did not try yet (judging from your signature), including the clinical trials. May not be the most appropriate analogy, but all pregnant women have some fear from delivery. I made it a point not to think about it until the time came, and was able to stick with it. In hindsight, it saved me many, many hours of worrying and fear of the unknown, yet when the time came I did what I was supposed to, and there was no fear involved. I believe that you and your husband have many happy hours ahead. DonĀ“t waste one more day worrying, it is simply a waste of energy that you can use to experience great new things. Some people start traveling, I think this is a grand idea. All the best, God bless.
Father (69 now) diagnosed with PCs in Jan 2011:
DRE positive, PSA 7.5, biopsy Gleason 6, second expert opinion: Gleason 7 and 8.
two inconclusive bone-scintigraphies, MR scan showed 2 bone mets
Feb 2011: Started hormonal therapy (Trelstar+Casodex) in Jan 2011
Jan 2012: Added Zometa
Mar 2012: went "off" hormonal therapy after PSA reached 0.055

douglas in oklahoma
New Member


Date Joined Sep 2012
Total Posts : 18
   Posted 9/23/2012 12:46 PM (GMT -6)   
To Tednsal, I have no wisdom; but i do have my story. In July i was in constant pain with drugs 'round the clock. I was not watering my garden or even able to feed the cats. X-Mas was not looking possible. Taxotere had failed earlier in the summer; then on Aug. 8th i started Zytiga and within days the pain went away. Every day since has been an improvement with my PSA going from over 1,500 down to 92. in less than 30 days. It is easy to say crap when things are on the upswing of course. I mean to say, this whole trip for me has been full of surprises, a lot bad but not ALL. So some days would come, and i could not fight the sucker and the death demons would win and i would be frozen in depression. Other days, i would win and l would live the day out. Ya do the best you can. One must do, what one can, while one is able with full heart and focus. life is too precious not to try, but fail...we all do. my heart goes out to you and i/we are on the same bloody road.

nhwife
Veteran Member


Date Joined Mar 2012
Total Posts : 721
   Posted 9/23/2012 1:10 PM (GMT -6)   
Tednsal, my husband was diagnosed in 2002 and he has had surgery, radiation, hormone treatments, Ketoconozal, xytiga, and taxotere. Currently he is on MDV3100. His PSA has gone down so that is good.
I think we are feeling that we are lucky to be living in 2012 now, rather than even 10 years ago. There are lots of hopeful treatments. While there is always hope for a cure, we will be glad to just have this beast managed.
I just want to extend a virtual hug out to you. Try to remember you and your husband are not cancer; you are you. Getting to 50 years of marriage is a very worthy goal...and then it will be 55....then 60. Onward.
There's a chant on this board - we will beat this crap. Maybe it is better to say: this crap is not who we are.
Best to you and your husband.
Hubby, dx 2002, age 50
PSA 6.8 Gleason 7 (4+3)
Surg Jan 2003
G7pT3c perineural involve., sem. ves., neg. margins
2005 rising PSA
2006 RT, HT
2008 Cas, Zometa
2011 Keto
PSA Dec. 2011 20.2
2012 Zytiga PSA March 2012 14
March 30 - PSA 18, some lymph node tumor growth
April - stopped zytiga, begin Taxotere PSA 20
Taxotere: 4/30/12, 5/21, 6/11
PSA 30 Tax stopped
MDV3100 PSA 11.75

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4450
   Posted 9/23/2012 1:22 PM (GMT -6)   
Tednsal, as much as I would like to offer hope, etc, that would not be answering your very specific questions about the physical process of dying from advanced metastatic cancer. Although we haven't had many here to die from it, and none to share their final stage of disease, there should be an abundance of info on the net that can describe it to you. If you think you have 2 years to go, then there's a lot of healthy living ahead, but sadly, if any further treatment fails, then this issue will have to be addressed. From what little bit that has been shared here, it appears that the terminal ill patient is healthy and mobile until nearly the time of death. It does seem to be a rapidly accelerating process, and the worse of it doesn't seem to start until the very end of life. I think the few here and others I know of in the local area was well until a month or less before death, then the downward spiral took over. The actual shutting down of the organs and systems are similar to any other death from advanced cancer. With the best of modern medicine and pain control available today, one's death doesn't have to be the agony of past times. My Dad died of advanced lung cancer and he was functional and kept pain-free to the end. It was only the last 24 hrs. that he was mostly unaware of his surroundings and the last 8 that he was in a final coma. This was made possible by the hospice workers and doctors working to ensure he could die at home, with dignity and as pain free as possible. The best option most patients has is to find and join the best hospice group available. I hope I haven't been too blunt with you, but you asked.

Now, I tried to answer your question as directly as I could, so now I get to say that there may be others options available and the 'end' may not be as close as you think. Newer drugs are available now, with more coming, and the length of time he had may be pushed back for years beyond that. Don't give up looking for alternatives, and keep fighting it. You and he will be in my prayers.
James C, 65, A Better Man /Injections? Read This
4/07: PSA 7.6, 3/16 PCa, 5% inv, lf. lobe, GS6
9/07: open RP, Path: pT2c, 110 gms., Prob. micro.inv.-left apical margin -GS6
5 Yrs: .04 'til 4/10-.06, 12/10-.09, 5/11-.08, 9/11-.14, 2/12-.10, 7/12-.13

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 959
   Posted 9/23/2012 6:34 PM (GMT -6)   
My dad died of prostate cancer.  The hospice made sure he was , for the most part, free of pain.  Near the end (last month or so) he lost his appetite, and he would sleep for an increasing percentage of the day.  The morphine made him a little bit groggy, even when he was awake.  But not so groggy that he could not have intelligent conversations with friends and family.  I visited about 4 weeks before he died.  We had a lot of good conversations.  We even managed to go out to dinner one night, and another night we shared a pizza and some very good scotch.  Dying from terminal cancer is, of course, very unhappy.  But paliative care is quite good these days, and I think most people are like my dad -- able to have a decent life until pretty near the end. 

douglas in oklahoma
New Member


Date Joined Sep 2012
Total Posts : 18
   Posted 9/24/2012 1:25 PM (GMT -6)   
James C. You said that very well. I would add one thing: every person's passing is unique. So you really can't know all or most of what is coming your way.. until it is there. Not much comfort, i know. But life is full of omg moments and isn't that lovely, bits. Courage is the unique human quality that transends the fear, walks into the next moment..with your legs shaking or not, and embraces what is coming. Some have religion as their bedrock, others of us have just the love of our beloved and family.

Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 2203
   Posted 9/24/2012 2:12 PM (GMT -6)   
Tednasal,
As much as I can understand you wanting information....( I use to live there) .... it sounds like you have resigned yourself to the grave. My doctors gave me a year and it has been 75 months. I well known oncologist once told me there is always another treatment as long as the patient is strong enough. Don't be digging a hole in the ground just yet. I know that when my time comes it will be in a morphine induced coma. I choose not to focus on that but rather to focus on living my life to the fullest. My grampa passed a year ago. He was 93. At the hospice was a book that talked about the final stages of life. I read the book and gramps passed just how the book said he would. He just slowed down and finally took his last breath. As a previous poster stated.... death is hardest on those who are left behind. Doctors practice medicine and nobody knows how long anybody has to live. Todd

greetingz
Regular Member


Date Joined Aug 2012
Total Posts : 247
   Posted 9/24/2012 3:57 PM (GMT -6)   
I too have a 2 year life expectancy. Gleason of 9 with multiple involvement in bones-lymph nodes- and some on lungs. There are times when I am so discouraged due to the depressive effects of hormone treatment it scares me and just takes the life out of everything. Just under 3 months into this stuff.

It hurts deeply to know others are suffering the same things. I sure do understand the emotional issues. I just hate how this affects my wife. One thing I am hanging on to is the fact we all go sooner or later, and as a Christian I understand that all this is to build character, knowing that I have a little more precise knowledge of when my time is. So, I pray for your situation as well as others here in the forums and, as we all do, long for healing breakthroughs.
61 vet. Feeling ill starting in Jan 12. Dx May, gastritis, heart disease 90% two arteries. Cancer suspect.
Dx July 5 Gleason 9 prostate cancer. Heart surgery denied.
Psa Feb 4.09-June 44.0-July 3.07. Hormone injection and pill Started Mid June.
10 bone mets-multiple lymph node mets- some on lung.
Radical lifestyle diet began in Aug. 9grams Sat fat intake. Radical sugar reduction.

Post Edited (greetingz) : 9/24/2012 3:14:13 PM (GMT-6)


tednsal
Regular Member


Date Joined Sep 2012
Total Posts : 198
   Posted 9/25/2012 10:50 PM (GMT -6)   
I certainly appreciate all of the responses given to me....they were all inspiring, informative, enlightening, thought provoking and some of them seemed like they were a cleansing of the soul. I have been very fragile lately, I don't know if I have ever been this emotional, for this is not in my character make-up and I am not used to crying so much. Yes, it is inevitable that we all must die, it is just knowing that it is sooner than was expected and knowing this is hard to handle. However, your words of comfort and understanding of my husband and my situation brings courage for us to keep up the good fight and to "carry on". I have been strengthened by your support and with the Lord's guidance, we will endure this disease and try to persevere as long as possible.
I will post information as it becomes available as to our trails with coping and treatments. This site is very helpful and informative.
I have a friend whose husband has small cell carcinoma of the lung. It has spread to the brain and stomach. He has had the cyber-knife to the brain and it has shrunk the tumors) and is currently only on radiation, no more chemotherapy. Most of the doctors don't have much hope and have just told the wife to continue with the radiation as palliative therapy. I don't see where this site has anything addressing lung cancer, but I told her about it and said she could check it out as well.
Current age: 67
PSA age 55: 10.9 (11/1999)
Gleason score: left: 3 + 3 =6 right: 4 + 3 = 7
Radical Prostatectomy at Johns Hopkins 04/00
Radiation: 37 sessions
From 05/00 to 11/06 PSA stayed at 0.1 - Lupron until January 2004
PSA: 0.16 - 09/04 (Back on Lupron injections)
PSA: 2.1 - 09/09 - Casadex & Lupron PSA dropped
PSA 4.3 - 09/11 - Bone & CT five spots (skull, ribs, illiac & sacrum)
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