Gleason 9...and a high PSA

jezebel
jezebel Member Posts: 11
edited March 2014 in Prostate Cancer #1
Hey Hi to you all
My husband has a very aggressive form of Prostate Cancer and is not expected to live the 5 year 'rule'. Is there anyone else out there with an aggressive form of this cancer that has been given a bad prognosis. I have done lots of research about this cancer....just wanted to talk to someone else in the same boat....even anyone with a better prognosis..hey...I just guess I want to talk.........Jez xx

Comments

  • rogermoore
    rogermoore Member Posts: 264 Member
    #2
    I'm so sorry to hear of your husband's prognosis. I'm a survivor of a prostatectomy a little over a year ago. My Father, however (age 82 when diagnosed I think) is now nearing his 90th birthday. He has been taking a new drug for several years now that is administered by implantation of a pellet. It has worked miracles with his cancer. However, I do think his was described as a slow grower. I don't know if this helps, but leastways it does tell you that there MIGHT be some help out there. My best advice is to get more than one opinion from the BEST doctors you can find.

    Good Luck!

    Roger
  • jezebel
    jezebel Member Posts: 11
    #3
    rogermoore said:

    I'm so sorry to hear of your husband's prognosis. I'm a survivor of a prostatectomy a little over a year ago. My Father, however (age 82 when diagnosed I think) is now nearing his 90th birthday. He has been taking a new drug for several years now that is administered by implantation of a pellet. It has worked miracles with his cancer. However, I do think his was described as a slow grower. I don't know if this helps, but leastways it does tell you that there MIGHT be some help out there. My best advice is to get more than one opinion from the BEST doctors you can find.

    Good Luck!

    Roger

    Hi Roger

    Thankyou for replying.......I have read so much about this cancer being slow growing...it does give me hope...even though in my heart I just know my husbands isn't. But if you don't have hope.....all is lost!! Every day he wakes up feeling good.....is a good day. We are considering a clinical trial....tis all abit scarey..but on we march. Through thick and thin as they say! Thanks again for replying.....all verbal donations very welcome! My husbands father also died from this cancer.......

    Take care Roger and congratulations for beating this godammed awful disease!

    a long and cancer free life to you my friend

    love Jez xxx
  • rogermoore
    rogermoore Member Posts: 264 Member
    #4
    jezebel said:

    Hi Roger

    Thankyou for replying.......I have read so much about this cancer being slow growing...it does give me hope...even though in my heart I just know my husbands isn't. But if you don't have hope.....all is lost!! Every day he wakes up feeling good.....is a good day. We are considering a clinical trial....tis all abit scarey..but on we march. Through thick and thin as they say! Thanks again for replying.....all verbal donations very welcome! My husbands father also died from this cancer.......

    Take care Roger and congratulations for beating this godammed awful disease!

    a long and cancer free life to you my friend

    love Jez xxx

    Jez

    Please keep me informed of your husband's health. Anytime just want someone to talk to, my e-mail address is listed on my home page on this site. Best of luck!!

    Roger
  • cstark
    cstark Member Posts: 16
    #5
    Hi Jezz! Im a 3 yr survivor...and I believe that there is ALWAYS hope! If you ever want to just write an e-mail or chat on IM, just reply to this!..Im happy to listen anytime! Charles. (PS.I had RP in Apr of 1999).
  • jezebel
    jezebel Member Posts: 11
    #6
    rogermoore said:

    Jez

    Please keep me informed of your husband's health. Anytime just want someone to talk to, my e-mail address is listed on my home page on this site. Best of luck!!

    Roger

    Hi Roger

    Thankyou so much...at present he is comfortable and we are trying so hard to carry on as normal. I certainly will email you privately if... rather... when my husband deteriorates as I tink I'm going to need as many friends as I can find. I love him so much and cannot bear the thought of life without him. Thanks for your kindness my friend...good luck to you too!!
    take care
    love Jez xxx
  • jackb
    jackb Member Posts: 14
    #7
    Hi,
    I read your messages and it makes me so sad to see what you're going through. My husband (jackb - check his web page at http://www.acscsn.org/webpage_view?user_id=8521 if you want to read about his experiences) and I have been so lucky since his cancer was discovered - early, thank God. I don't know where you all live, but I hope you are using the facilities of a cutting-edge teaching hospital. Of course, we all think that where we went is the best, but I vote for Johns Hopkins University Hospital in Baltimore, MD (although I know there are several fine institutions world-wide).

    Anyway, I just wanted you to know that I'm praying for you and your husband, and hope you have some happy times together.

    Jean
  • rogermoore
    rogermoore Member Posts: 264 Member
    #8
    jezebel said:

    Hi Roger

    Thankyou so much...at present he is comfortable and we are trying so hard to carry on as normal. I certainly will email you privately if... rather... when my husband deteriorates as I tink I'm going to need as many friends as I can find. I love him so much and cannot bear the thought of life without him. Thanks for your kindness my friend...good luck to you too!!
    take care
    love Jez xxx

    Jez,

    I just read an interesting article on the CSN home page. It seems that a study has indicated vitamin E slows the growth of Prostate cancer cells. You might want to read. Hope your husband is fareing ok (you too)

    Roger
  • jezebel
    jezebel Member Posts: 11
    #9
    rogermoore said:

    Jez,

    I just read an interesting article on the CSN home page. It seems that a study has indicated vitamin E slows the growth of Prostate cancer cells. You might want to read. Hope your husband is fareing ok (you too)

    Roger

    Hi Roger

    That's interesting! We may actually try a clinical trial.....using bisphosphonates (Clodronate). It too is supposedly meant to suppress growth....especially to the bones. It also helps with pain. My husband does not want Zolodex......our sex life is still active and we seriously don't want to lose it. He is not too bad at the moment..though he had a bad day yesterday....a friend who has been going through this with Graham (my husband)....as he too has the same cancer...died on Sunday. It had freaked us out abit but we are recovering. Thanks for your concern...I too am coping ok....I just keep smiling and planning and smiling and planning....but I cry in my dreams!! :( I'm fine really.

    Thanks Roger.....you've been so kind...amazing how a few kind words can make you feel....:)

    love Jez xxx
  • rogermoore
    rogermoore Member Posts: 264 Member
    #10
    jezebel said:

    Hi Roger

    That's interesting! We may actually try a clinical trial.....using bisphosphonates (Clodronate). It too is supposedly meant to suppress growth....especially to the bones. It also helps with pain. My husband does not want Zolodex......our sex life is still active and we seriously don't want to lose it. He is not too bad at the moment..though he had a bad day yesterday....a friend who has been going through this with Graham (my husband)....as he too has the same cancer...died on Sunday. It had freaked us out abit but we are recovering. Thanks for your concern...I too am coping ok....I just keep smiling and planning and smiling and planning....but I cry in my dreams!! :( I'm fine really.

    Thanks Roger.....you've been so kind...amazing how a few kind words can make you feel....:)

    love Jez xxx

    Jez,

    So sorry to hear of you friend's death. I can certainly understand how disconcerting this had to have been for both of you.

    You must keep in mind that everyone reacts differently to treatments. Sex was a primary concern when I was diagnosed both to my wife (Susie) and me. I was 58 when I had my surgery, but consider myself to be a young 58. I think it is very positive that you both still have romance.

    It's amazing what the results of an optimistic attitude can be. Please remember you have friends to help support you during these rough times.

    Your friend,

    Roger
  • sammy
    sammy Member Posts: 9
    #11
    cstark said:

    Hi Jezz! Im a 3 yr survivor...and I believe that there is ALWAYS hope! If you ever want to just write an e-mail or chat on IM, just reply to this!..Im happy to listen anytime! Charles. (PS.I had RP in Apr of 1999).

    Hi! My Father was just diagnosed with Prostate cancer and he also had a high PSA score(75.5) and a high gleason Score(7). Would you mind sharing your scores and treatments with me. I'm so worried about my father because of these high scores. Thanks,
  • sammy
    sammy Member Posts: 9
    #12
    Hi,

    My Father has also been diagnosed with advanced prostate cancer. He scored 7 on the Gleeson Scale and 75.5 on the PSA test. Would you mind sharing with me the treatments your husband is receiving. You may e-mail me at Carol468@surfbest.net.
    Thanks
  • jezebel
    jezebel Member Posts: 11
    #13
    jackb said:

    Hi,
    I read your messages and it makes me so sad to see what you're going through. My husband (jackb - check his web page at http://www.acscsn.org/webpage_view?user_id=8521 if you want to read about his experiences) and I have been so lucky since his cancer was discovered - early, thank God. I don't know where you all live, but I hope you are using the facilities of a cutting-edge teaching hospital. Of course, we all think that where we went is the best, but I vote for Johns Hopkins University Hospital in Baltimore, MD (although I know there are several fine institutions world-wide).

    Anyway, I just wanted you to know that I'm praying for you and your husband, and hope you have some happy times together.

    Jean

    Hi Jean

    I will go and read about your husband...I am from the UK......and my husband has decided he does not want any more treatment. he has been in pain for two weeks...but it's in his upper back so we are confused and painkillers do not help. We are going back to the doctors on 4th July....yeah...independence day.....and we are becoming afraid. Thanks for writing with your feelings.....it is very much appreciated!!

    love Jez xxx
  • jezebel
    jezebel Member Posts: 11
    #14
    sammy said:

    Hi,

    My Father has also been diagnosed with advanced prostate cancer. He scored 7 on the Gleeson Scale and 75.5 on the PSA test. Would you mind sharing with me the treatments your husband is receiving. You may e-mail me at Carol468@surfbest.net.
    Thanks

    Hi Sammy

    My husbands cancer was diagnosed with a PSA of 87 and Gleason 9. They put him on Casodex immediately as his tumor was big, aggressive and bulky. He was on that for 5 months and then underwent radical radiotherapy which left him in a catheter for 4 months. This treatment failed and he was put back on Casodex....which kept the cancer in check for 2 years. Now the cancer is growing very fast and Casodex is not working. They want to put him on Zolodex injections but he does not want it......so we may try Clodronate....from the bisphosponates line of drugs...which controls calcium...and hopefully will help with metastases. He hs begun to experience pain...but I am confused because the pain is in his shoulder...which does not sound like the cancer..but who knows....it could be anywhere by now. I have seen him go a few funny colours...like yellowish and greyish...but we are confused. I will email you privately very soon to see how you are faring with your father.
    take care

    my thoughts and prayers are with you
    love Jez xxx
  • dolphin
    dolphin Member Posts: 5
    #15
    Hi Jez, I would really like to talk with you, please email me at rapiddavid@yahoo.com
    Thank you,,,Dave.
  • rogermoore
    rogermoore Member Posts: 264 Member
    #16
    rogermoore said:

    Jez,

    So sorry to hear of you friend's death. I can certainly understand how disconcerting this had to have been for both of you.

    You must keep in mind that everyone reacts differently to treatments. Sex was a primary concern when I was diagnosed both to my wife (Susie) and me. I was 58 when I had my surgery, but consider myself to be a young 58. I think it is very positive that you both still have romance.

    It's amazing what the results of an optimistic attitude can be. Please remember you have friends to help support you during these rough times.

    Your friend,

    Roger

    Jez,

    I have not heard from you for some time now. Please respond and update me on your husband's condition. I hope the trial you indicated in your last response had positive results.

    Roger
  • barrett
    barrett Member Posts: 1
    #17
    Hi, I to have metastic bone cancer in the spine, hips, so on. Prognosis originally was
    18 months. Am optomistic, take one day at a time. Have been going to M.D. Anderson cancer center in Houston, Tx for consultation treatment in which i have in dayton, ohio. Would be happy to hear from you and learn of any news you may have picked up on. My email is: itsbbbinoh@starband.net
  • clausewitz
    clausewitz Member Posts: 7
    #18
    Have a look at www.cooleyville.com/cancer
    There are many therapies for agressive prostate cancers and also trials with new drugs
  • rogermoore
    rogermoore Member Posts: 264 Member
    #19
    jezebel said:

    Hi Roger

    That's interesting! We may actually try a clinical trial.....using bisphosphonates (Clodronate). It too is supposedly meant to suppress growth....especially to the bones. It also helps with pain. My husband does not want Zolodex......our sex life is still active and we seriously don't want to lose it. He is not too bad at the moment..though he had a bad day yesterday....a friend who has been going through this with Graham (my husband)....as he too has the same cancer...died on Sunday. It had freaked us out abit but we are recovering. Thanks for your concern...I too am coping ok....I just keep smiling and planning and smiling and planning....but I cry in my dreams!! :( I'm fine really.

    Thanks Roger.....you've been so kind...amazing how a few kind words can make you feel....:)

    love Jez xxx

    Jez,

    I certainly hope no news is good news. I haven't heard from you since back in June. Please let me know what is happening on your front. I do hope you and your husband are faring ok. You are both in our prayers daily.

    Roger

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