Gleasn 6 and 9

rotorhead
rotorhead Member Posts: 3
Greetings all.
I posted here a few months ago and have been unable to respond to the kind messages that were left. I was diagnosed in late November with stage 2 gleason six and nine. Currently enrolled in a punch study where I am getting six rounds of Chemo and then to surgury. MY PSA was 4.2 now it is down to 1.4. Also recieved a Lupron shot and am dealing with that as well. (Mainly hot flashes but no weight gain.) All I hear on this board is that nines are bad. Anyone else in my situation? Looking forward to hearing from you all. I am in northern NY/ VT.

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    NEVER SAY NEVER!!
    Rotor

    I am glad to read about your latest stats. At your age (47) choosing the “mother of all treatments” may “clean” you from the cancer but it may leave you with permanent side effects. So far your system is responding well and I wish you a continuous successful journey.

    I have no answer to your queries and there are fewer guys posting on chemo experiences. These are also more common on older patients. In any case I would like to post here the story of a guy with Gleason score 9 which I read in another forum, that have chosen a similar “package” of treatment.
    I hope I am not being pertinent by typing it over. I think that this fellow survivor would like to share with us his story. It goes like this;

    “…At 51, I was diagnosed with Gleason 5+4, my cancer had been doubling every two years. A couple of days ago I turned 54. Statistics I read said 18 months from detection to death.

    My Urologist knew the story as soon as he did the digit exam, but we did the tests anyway. He said he felt that it was out of the prostate and that I should have a radical prostatectomy which would still give me the option of radiation later as leaving the prostate in would give me problems later in life if I was successful in beating the cancer. I agreed with him and he got me in as quickly as he could, I got the slot of a patient who couldn't make up their mind. After RP and confirmation that cancer was found in at least one lymph node, I was passed to an Oncology specialist who offered me a new treatment of Chemo [Taxotere] but I had to have the treatment minimum of 5 weeks after the RP and less than 7 weeks after and before radiation. The Dr had been having success with early intervention on aggressive PC as had other Drs trying the treatment throughout the world. Neither Government nor my medical insurer would pay for the treatments as they said results had yet to be published. I had to fund the treatment myself, which of course I did. Chemo was tough; I had bad reactions but stuck with it.

    After Chemo, I was passed onto a medical Oncologist for further treatment. His strategy was to try everything, then later neither of us would have regrets at not trying something. It was time for radiation to aim at the RP site to get any cancer that the chemo couldn't touch due to lack of blood flow in that area. So I went through that daily routine for 3 months. After each treatment my PSA kept dropping. So what was next?

    Enter Zoladex. Zoladex in a lot of ways was the toughest treatment, certainly mentally. My balls shrunk to almond size, I lost my muscles and strength, either Zoladex or chemo stole the feel of my skin, it just didn't feel like my skin any more. A lot of my hair on my body didn't come back. My hair came back from chemo a bit darker but my beard came back greyer. Through all my treatments I kept laughing and smiling and kept being determined to beat the cancer. I was elated to get a 0.00 and disappointed to get a 0.01 I tried alternative remedies, I have been eating anti cancer foods, I have been building my new backyard on my own building up my strength and building up my confidence that my body could handle hard work again. I have been 0.01 since at least April 2010.

    In July my Oncologist warned me that after Christmas the Zoladex would be leaving my body and to expect my PSA to grow as the testosterone grew. I went to my appointment today with new strategies in mind to try. I hoped the PSA had only doubled. I was very surprised to find that my PSA remained 0.01 whilst my testosterone had grown from 0.5 last July to 2.2 last week. My Oncologist is quietly confident that we may have beaten the cancer, or cautiously optimistic. Either way, the testosterone is returning but without the expected increase in PSA and for me that is great news!

    Maybe I am celebrating too early, but the news has been a shot in the arm after the last 3 years. At the very least my treatment has bought me years and I haven't regretted any of the treatments; they did what they were supposed to do. Okay, now I am concentrating on overcoming the ED. Over the last month I have had some erections. Nothing like prior to the RP, but a long way from my Urologist saying I would NEVER have an unassisted erection. I don't know why I am having semi erections when I have no nerve bundles, but I am not complaining. I will take up the pump again and see what I can come up with.

    NEVER SAY NEVER!!
    …..”

    I hope he is doing find and that he succeeded in killed the beast forever.

    VGama
  • hunter49
    hunter49 Member Posts: 247 Member

    NEVER SAY NEVER!!
    Rotor

    I am glad to read about your latest stats. At your age (47) choosing the “mother of all treatments” may “clean” you from the cancer but it may leave you with permanent side effects. So far your system is responding well and I wish you a continuous successful journey.

    I have no answer to your queries and there are fewer guys posting on chemo experiences. These are also more common on older patients. In any case I would like to post here the story of a guy with Gleason score 9 which I read in another forum, that have chosen a similar “package” of treatment.
    I hope I am not being pertinent by typing it over. I think that this fellow survivor would like to share with us his story. It goes like this;

    “…At 51, I was diagnosed with Gleason 5+4, my cancer had been doubling every two years. A couple of days ago I turned 54. Statistics I read said 18 months from detection to death.

    My Urologist knew the story as soon as he did the digit exam, but we did the tests anyway. He said he felt that it was out of the prostate and that I should have a radical prostatectomy which would still give me the option of radiation later as leaving the prostate in would give me problems later in life if I was successful in beating the cancer. I agreed with him and he got me in as quickly as he could, I got the slot of a patient who couldn't make up their mind. After RP and confirmation that cancer was found in at least one lymph node, I was passed to an Oncology specialist who offered me a new treatment of Chemo [Taxotere] but I had to have the treatment minimum of 5 weeks after the RP and less than 7 weeks after and before radiation. The Dr had been having success with early intervention on aggressive PC as had other Drs trying the treatment throughout the world. Neither Government nor my medical insurer would pay for the treatments as they said results had yet to be published. I had to fund the treatment myself, which of course I did. Chemo was tough; I had bad reactions but stuck with it.

    After Chemo, I was passed onto a medical Oncologist for further treatment. His strategy was to try everything, then later neither of us would have regrets at not trying something. It was time for radiation to aim at the RP site to get any cancer that the chemo couldn't touch due to lack of blood flow in that area. So I went through that daily routine for 3 months. After each treatment my PSA kept dropping. So what was next?

    Enter Zoladex. Zoladex in a lot of ways was the toughest treatment, certainly mentally. My balls shrunk to almond size, I lost my muscles and strength, either Zoladex or chemo stole the feel of my skin, it just didn't feel like my skin any more. A lot of my hair on my body didn't come back. My hair came back from chemo a bit darker but my beard came back greyer. Through all my treatments I kept laughing and smiling and kept being determined to beat the cancer. I was elated to get a 0.00 and disappointed to get a 0.01 I tried alternative remedies, I have been eating anti cancer foods, I have been building my new backyard on my own building up my strength and building up my confidence that my body could handle hard work again. I have been 0.01 since at least April 2010.

    In July my Oncologist warned me that after Christmas the Zoladex would be leaving my body and to expect my PSA to grow as the testosterone grew. I went to my appointment today with new strategies in mind to try. I hoped the PSA had only doubled. I was very surprised to find that my PSA remained 0.01 whilst my testosterone had grown from 0.5 last July to 2.2 last week. My Oncologist is quietly confident that we may have beaten the cancer, or cautiously optimistic. Either way, the testosterone is returning but without the expected increase in PSA and for me that is great news!

    Maybe I am celebrating too early, but the news has been a shot in the arm after the last 3 years. At the very least my treatment has bought me years and I haven't regretted any of the treatments; they did what they were supposed to do. Okay, now I am concentrating on overcoming the ED. Over the last month I have had some erections. Nothing like prior to the RP, but a long way from my Urologist saying I would NEVER have an unassisted erection. I don't know why I am having semi erections when I have no nerve bundles, but I am not complaining. I will take up the pump again and see what I can come up with.

    NEVER SAY NEVER!!
    …..”

    I hope he is doing find and that he succeeded in killed the beast forever.

    VGama

    Great story Gama. Keep up
    Great story Gama. Keep up the good news and keep building the yard. The visable sense of accomplishment is as good as laughter