Hormone Refractory PS Cancer and Rising PSA

Mozzmo
Mozzmo Member Posts: 30
edited March 2014 in Prostate Cancer #1
Hi. I am wanting to get some information about what the outlook is for my father who is 73 and has metastatic prostate cancer. At diagnosis 3 years ago it has spread to his spine causing great pain. Since then he's had radiation and a variety of hormone treatments. Presently he is being treated with Lupron and high dose Casodex, but his PSA is doubling about every 4 months (recently went from 2.6 to 5.5 in 4 months). He presently is in no pain but has decided against chemotherapy in the future. I also know his original gleason score was high but I don't know the exact figure. I respect his choices as they are very personal decisions. However, I am unclear as to what the prognosis or survival time would be in general. I know no one can be certain about this but is there any general information about cancer at this state. Any information would be appreciated. Thank you all adn God bless.
David

Comments

  • 2ndBase
    2ndBase Member Posts: 220
    #2
    Sorry about your father. I was diagnosed 11/02 with a psa of 23 and a gleason of 9. I was told to expect to liv about two years if I took treatment with a 2% chance of living 10 yea rs. I took one shot of lupron and one month on casodex. I have a lot of pain due to treatment and arthritis all over my body. Took 2 months off work for recovery and was replaced. Now I have no job or insurance. I was then denied SS disiabilty. So nobody said life is fair. I wish I had never taken any treatment and will have no more. Its each persons own decision and do not presume that you know whats best for your father. If he would like to contact me my email add is SecondbaseNY@cs.com. All the best!
  • Benji48
    Benji48 Member Posts: 117
    #3
    Hi,
    Here's a web site that may provide some useful information:
    http://www.prostateinfo.com/patient/treatment/other.asp
    Particularly with regards to Strontium89
    I admire your fathers outlook, especially about the chemotherapy issue, since current efficacy with it is only in the matter of months & as far as I'm concerned not worth that amount of torture!
    Our (this discussion group) sincere prayers are with him & you.
    Benji
  • Mozzmo
    Mozzmo Member Posts: 30
    #4
    2ndBase said:

    Sorry about your father. I was diagnosed 11/02 with a psa of 23 and a gleason of 9. I was told to expect to liv about two years if I took treatment with a 2% chance of living 10 yea rs. I took one shot of lupron and one month on casodex. I have a lot of pain due to treatment and arthritis all over my body. Took 2 months off work for recovery and was replaced. Now I have no job or insurance. I was then denied SS disiabilty. So nobody said life is fair. I wish I had never taken any treatment and will have no more. Its each persons own decision and do not presume that you know whats best for your father. If he would like to contact me my email add is SecondbaseNY@cs.com. All the best!

    Mark52, if you read my original message carefully, you will see where I state that I RESPECT MY FATHER'S CHOICES. I don't presume anything. My father lives in another state so I am not there when he is at his doctor visits, my questions are more about what is his prognosis given his decision to not take chemo. I am sorry things have been so hard for you. I too have cancer and know it is not an easy journey.
  • nutt
    nutt Member Posts: 140
    #5
    Life is not suppose to be fair gentlemen but, I can tell you that I have met some really caring people on this network. I believe we all have some contribution to make to each others well being and faith. If, it is of any help, I keep the below posted right where I can see it all the time when I get to the point of,... frusturation.

    "THOUGHT FOR THE DAY
    Yesterday is history. Tomorrow a mystery.
    Today is a gift.
    That's why it's called the PRESENT!

    We think this is special,..... live and savor every moment.

    Life is NOT a dress rehearsal."

    UNKNOWN

    Best Regards,
    Joe
  • kaiepooh
    kaiepooh Member Posts: 52
    #6
    2ndBase said:

    Sorry about your father. I was diagnosed 11/02 with a psa of 23 and a gleason of 9. I was told to expect to liv about two years if I took treatment with a 2% chance of living 10 yea rs. I took one shot of lupron and one month on casodex. I have a lot of pain due to treatment and arthritis all over my body. Took 2 months off work for recovery and was replaced. Now I have no job or insurance. I was then denied SS disiabilty. So nobody said life is fair. I wish I had never taken any treatment and will have no more. Its each persons own decision and do not presume that you know whats best for your father. If he would like to contact me my email add is SecondbaseNY@cs.com. All the best!

    This is my first time to this site. I am also facing the same situation with my husband.he is 58. His cancer spread to the spine and they put him on casodex and lupron. along with radiation treatment in 12/03. He was getting better and now the pain is back and he losing weight. They have him on pain meds as well and it doesn't help. they are also thinking about chemo. I hope we can both learn from hear. good luck. Also to Mark52. My husband was denied for ss disiabilty. We got a ss lawyer and appealed. he won. so try again and re-open the case. good luck to you too.
  • 2ndBase
    2ndBase Member Posts: 220
    #7
    kaiepooh said:

    This is my first time to this site. I am also facing the same situation with my husband.he is 58. His cancer spread to the spine and they put him on casodex and lupron. along with radiation treatment in 12/03. He was getting better and now the pain is back and he losing weight. They have him on pain meds as well and it doesn't help. they are also thinking about chemo. I hope we can both learn from hear. good luck. Also to Mark52. My husband was denied for ss disiabilty. We got a ss lawyer and appealed. he won. so try again and re-open the case. good luck to you too.

    Kaiepooh, Thank you for your response. I pray that your husband finds comfort from his pain and much happiness. Im sure he is thankful for your support, as I am for all the love and care I receive daily from my wife in spite of a poor prognosis. If either of you would like to you can send us an e-mail to SecondbaseNY@cs.com. All the best!!
















































































    Kaiepooh, Thank you for your note, it is encouraging to hear that your husband won disability on appeal.I pray that he finds a way to live without pain and that he is thankful for having you to help him enjoy life. It is not easy to deal with all the changes that cancer forces upon a couples marriage. My wife is my greatest comfort and stays strong in spite of a very poor prognosis. Im not very good with computers but if either of you would like to get in touch with my wife or me you can email us SecondbaseNY@cs.com. Have a super day!!
  • Mozzmo
    Mozzmo Member Posts: 30
    #8
    kaiepooh said:

    This is my first time to this site. I am also facing the same situation with my husband.he is 58. His cancer spread to the spine and they put him on casodex and lupron. along with radiation treatment in 12/03. He was getting better and now the pain is back and he losing weight. They have him on pain meds as well and it doesn't help. they are also thinking about chemo. I hope we can both learn from hear. good luck. Also to Mark52. My husband was denied for ss disiabilty. We got a ss lawyer and appealed. he won. so try again and re-open the case. good luck to you too.

    Kaiepooh sorry to read about your husband. I appreciate your response as it appears your husband is at a similar place as my father. I think your husband's age may make him a better candidate for chemo than my father. Chemo is such a difficult choice because apparently it reduces quality of life and presently does not delay the cancer's progress beyond a few months or so. I have done a lot of reading online over the last few days about prostate cancer. In particular, many articles discuss "psa velocity" and "psa doubling times". Supposedly the faster the velocity and the shorter the doubling time, the more serious the prognosis. Of course, nothing's definitive and the only certain thing about cancer is that it is "unpredictable". I have learned from my own situation with kidney cancer, that doctors resist giving what the prognosis is in serious situations as to not zap a patient's hope. As much as I understand that reasoning, it does not help family or the patient deal with reality and prepare for things. I think caregivers of cancer patients need to make sure they take time to nurture themselves and find outlets of support. Miracles happen everyday, and that is my prayer for all those grappling with a cancer diagnosis. Please feel free to email me at macxamus@cox.net

    God Bless,
    David
  • Mozzmo
    Mozzmo Member Posts: 30
    #9
    kaiepooh said:

    This is my first time to this site. I am also facing the same situation with my husband.he is 58. His cancer spread to the spine and they put him on casodex and lupron. along with radiation treatment in 12/03. He was getting better and now the pain is back and he losing weight. They have him on pain meds as well and it doesn't help. they are also thinking about chemo. I hope we can both learn from hear. good luck. Also to Mark52. My husband was denied for ss disiabilty. We got a ss lawyer and appealed. he won. so try again and re-open the case. good luck to you too.

    Kaiepooh, I forgot to mention that about a year ago my father had backpain due to the cancer spreading in his spine despite having had radiation. They decided to do a surigical predure where they injected a type of "bone glue" into the deteriorated areas where they had radiated. The glue supposed not only strengthened the areas but also kill any cancer cells they come in contact with. The procedure definitely helped my father. His pain went away.......and it slowed the rise of his psa. It's only been the last 4 months or so that his psa is rising more aggressively. Not sure if you have heard of this "glue" option.....but if you husband's situation is appropriate for it, it might be an option to ask his doctors about.

    Good Wishes....
  • kaiepooh
    kaiepooh Member Posts: 52
    #10
    2ndBase said:

    Kaiepooh, Thank you for your response. I pray that your husband finds comfort from his pain and much happiness. Im sure he is thankful for your support, as I am for all the love and care I receive daily from my wife in spite of a poor prognosis. If either of you would like to you can send us an e-mail to SecondbaseNY@cs.com. All the best!!
















































































    Kaiepooh, Thank you for your note, it is encouraging to hear that your husband won disability on appeal.I pray that he finds a way to live without pain and that he is thankful for having you to help him enjoy life. It is not easy to deal with all the changes that cancer forces upon a couples marriage. My wife is my greatest comfort and stays strong in spite of a very poor prognosis. Im not very good with computers but if either of you would like to get in touch with my wife or me you can email us SecondbaseNY@cs.com. Have a super day!!

    Thank you for your kind thoughts and info. I to find it hard but am happy to know that we are not alone and there is good people to talk to.
    i have not heard of the glue but will look into it. my prayers are with you all.
    my e-mail is kaiepooh@msn.com i will keep in touch.
    g-d bless
  • jdswife
    jdswife Member Posts: 1
    #11
    kaiepooh said:

    This is my first time to this site. I am also facing the same situation with my husband.he is 58. His cancer spread to the spine and they put him on casodex and lupron. along with radiation treatment in 12/03. He was getting better and now the pain is back and he losing weight. They have him on pain meds as well and it doesn't help. they are also thinking about chemo. I hope we can both learn from hear. good luck. Also to Mark52. My husband was denied for ss disiabilty. We got a ss lawyer and appealed. he won. so try again and re-open the case. good luck to you too.

    Hi!This is my first time to this site also. My situation sounds so much like yours. My husband was diag.at 46 with prostate. Went through the surgery, took casodex for 1yr.and started having liver problems from that. Stopped the casodex and had a psa less than .01 for 4 years. March 2003 we found out the psa was rising again. Started the Lupron shots in April.So far it has slowed things down but the shots are taking a toll on his body. Lots of bone pain. Our docs don't want to do any scans yet, so we don't know where it's at or if it has spread. He is still working and he gets upset when I try to talk to him about retiring now---he's 53. It's really hard to know what is the right thing to do. Any suggestions or advice would be appreciated.
  • seedoo
    seedoo Member Posts: 1
    #12
    I'm sorry to here about your Dad, but there is still hope. As of 12/1/03 my psa was 14.79 and have been hormone refractory since 6/5/02 with a psa rising about 1.5 points a month. Also I tumor (3cm) which has grown in all four ct scans in '03. I found the A.P. John Institute for Cancer Reserch while surfing on the web and began their Controlled Amino Acid Therapy protocol 12/12/03. On 1/13/04 my psa dropped slightly to 14.6. On 2/24/04 my psa was down to 13.1 I had a ct scan 3/02/04 which showed no change in size. They have had very good sucess with other cancers too, so don't give up. Unfortunately, my doctors refuse to consider any therapy other than their own, even in the face of facts. If you or anyone one else wants more info my E-mail is dskoko1@aol.com. The phone # at the A.P. John Institute is 1-877-661-2228

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