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RE: [protoninfo] To New Member Stew

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  • Stew Dodge
    Dave – Can you summarize hormone therapy side effects in your experience? Thanks Again… Stew From: protoninfo@yahoogroups.com
    Message 1 of 13 , Dec 1, 2011
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      Dave –

       

      Can you summarize hormone therapy side effects in your experience?

       

      Thanks Again…

       

      Stew

       

      From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
      Sent: Wednesday, November 30, 2011 8:18 PM
      To: protoninfo@yahoogroups.com
      Subject: Re: [protoninfo] To New Member Stew

       

       

      Hi Stew, 

       

      Let me place what I know in the following context:

       

      1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.

       

      2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 

       

      Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?

       

      3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.

       

      Best regards,

      DAVE

       

       

       

       

       


      From: Stew Dodge <stewdodge@...>
      To: protoninfo@yahoogroups.com
      Sent: Wednesday, November 30, 2011 7:34 PM
      Subject: RE: [protoninfo] To New Member Stew

       

      Dave –

       

      Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?

       

      Thanks again!!!!

       

      Stew

       

      From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
      Sent: Wednesday, November 30, 2011 4:45 PM
      To: protoninfo@yahoogroups.com
      Subject: [protoninfo] To New Member Stew

       

       

      As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.

       

      With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.

       

      The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)

       

      For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)

       

      By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)

       

      It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.

       

      The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)

       

      I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.

       

      As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.

       

      Stew, good luck.

       

      Best regards,

      DAVE

       

    • David Stevens
      Hi Stew,     Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different
      Message 2 of 13 , Dec 1, 2011
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        Hi Stew,
         
        Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 
         
        Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):
         
        ·        Zero sex drive
        ·        Erectile dysfunction
        ·        Hot flashes
        ·        Weight gain
        ·        Shoulder pain
        ·        Loss of muscle mass
        ·        Fatigue
        ·        Depression and mood swings
        ·        Osteopenia (“junior version” of osteoporosis)
        ·        Hair loss
        ·        Insomnia
        ·        Shrunken testes (don’t forget, your testosterone may drop below 20)
        ·        Gynecomastia (breast enlargement and tenderness)
        ·        Anemia
         
        I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 
         
        Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center , the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 
         
        I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.
         
        Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.
         
        In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.
         
        Best regards,
        DAVE

         
        From: Stew Dodge <stewdodge@...>
        To: protoninfo@yahoogroups.com
        Sent: Thursday, December 1, 2011 9:10 AM
        Subject: RE: [protoninfo] To New Member Stew

         
        Dave –
         
        Can you summarize hormone therapy side effects in your experience?
         
        Thanks Again…
         
        Stew
         
        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
        Sent: Wednesday, November 30, 2011 8:18 PM
        To: protoninfo@yahoogroups.com
        Subject: Re: [protoninfo] To New Member Stew
         
         
        Hi Stew, 
         
        Let me place what I know in the following context:
         
        1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.
         
        2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 
         
        Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?
         
        3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.
         
        Best regards,
        DAVE
         
         
         
         
         
        From: Stew Dodge <stewdodge@...>
        To: protoninfo@yahoogroups.com
        Sent: Wednesday, November 30, 2011 7:34 PM
        Subject: RE: [protoninfo] To New Member Stew
         
        Dave –
         
        Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?
         
        Thanks again!!!!
         
        Stew
         
        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
        Sent: Wednesday, November 30, 2011 4:45 PM
        To: protoninfo@yahoogroups.com
        Subject: [protoninfo] To New Member Stew
         
         
        As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.
         
        With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.
         
        The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)
         
        For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)
         
        By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)
         
        It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.
         
        The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)
         
        I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.
         
        As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.
         
        Stew, good luck.
         
        Best regards,
        DAVE
         


      • Fuller
        Excellent summary Dave! I was only on Lupron for five months and I had all of those except shoulder pain and anemia (and my initial hair loss was strangely
        Message 3 of 13 , Dec 2, 2011
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          Excellent summary Dave!
          I was only on Lupron for five months and I had all of those except shoulder pain and anemia (and my initial hair loss was strangely just above my ankles!). But I worked out at least three times a week and continued to do so for about two years after treatment. The weight gain did not go away until about then, but I am not exercising as much as I should now (I am 78) and the weight is coming back. We are all different as Dave says.

          Fuller

          --- In protoninfo@yahoogroups.com, David Stevens <davestevens.houstonattorneycpa@...> wrote:
          >
          > Hi Stew,
          >  
          >  
          > Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 
          >  
          > Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):
          >  
          > ·        Zero sex drive
          > ·        Erectile dysfunction
          > ·        Hot flashes
          > ·        Weight gain
          > ·        Shoulder pain
          > ·        Loss of muscle mass
          > ·        Fatigue
          > ·        Depression and mood swings
          > ·        Osteopenia (“junior version” of osteoporosis)
          > ·        Hair loss
          > ·        Insomnia
          > ·        Shrunken testes (don’t forget, your testosterone may drop below 20)
          > ·        Gynecomastia (breast enlargement and tenderness)
          > ·        Anemia
          >  
          > I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 
          >  
          > Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 
          >  
          > I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.
          >  
          > Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.
          >  
          > In sum, and for myself, Ichoose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce myrisk of a future relapse that might potentially result in me being on leuprolide for longer than two years.
          >  
          > Best regards,
          > DAVE
          >
          > ________________________________
          > From: Stew Dodge <stewdodge@...>
          > To: protoninfo@yahoogroups.com
          > Sent: Thursday, December 1, 2011 9:10 AM
          > Subject: RE: [protoninfo] To New Member Stew
          >
          >
          >  
          > Dave â€"
          >  
          > Can you summarize hormone therapy side effects in your experience?
          >  
          > Thanks Again…
          >  
          > Stew
          >  
          > From:protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
          > Sent: Wednesday, November 30, 2011 8:18 PM
          > To: protoninfo@yahoogroups.com
          > Subject: Re: [protoninfo] To New Member Stew
          >  
          >  
          > Hi Stew, 
          >  
          > Let me place what I know in the following context:
          >  
          > 1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate;
          > certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.
          >  
          > 2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 
          >  
          > Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?
          >  
          > 3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.
          >  
          > Best regards,
          > DAVE
          >  
          >  
          >  
          >  
          >  
          >
          > ________________________________
          >
          > From:Stew Dodge <stewdodge@...>
          > To: protoninfo@yahoogroups.com
          > Sent: Wednesday, November 30, 2011 7:34 PM
          > Subject: RE: [protoninfo] To New Member Stew
          >  
          > Dave â€"
          >  
          > Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple â€" Proton, Photon, Hormone.  Any thoughts?
          >  
          > Thanks again!!!!
          >  
          > Stew
          >  
          > From:protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
          > Sent: Wednesday, November 30, 2011 4:45 PM
          > To: protoninfo@yahoogroups.com
          > Subject: [protoninfo] To New Member Stew
          >  
          >  
          > As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.
          >  
          > With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.
          >  
          > The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)
          >  
          > For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)
          >  
          > By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)
          >  
          > It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.
          >  
          > The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)
          >  
          > I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.
          >  
          > As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.
          >  
          > Stew, good luck.
          >  
          > Best regards,
          > DAVE
          >  
          >
        • Stew Dodge
          Dave – I agree that experiencing ALL these side effects beats the hell out of the alternative. Again, I really appreciate your time and expertise on these
          Message 4 of 13 , Dec 2, 2011
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            Dave –

             

            I agree that experiencing ALL these side effects beats the hell out of the alternative.  Again, I really appreciate your time and expertise on these matters.

             

            Stew

             

            From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
            Sent: Thursday, December 01, 2011 2:46 PM
            To: protoninfo@yahoogroups.com
            Subject: [protoninfo] My experiences with leuprolide side effects

             

             

            Hi Stew,

             

            Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 

             

            Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):

             

            ·        Zero sex drive

            ·        Erectile dysfunction

            ·        Hot flashes

            ·        Weight gain

            ·        Shoulder pain

            ·        Loss of muscle mass

            ·        Fatigue

            ·        Depression and mood swings

            ·        Osteopenia (“junior version” of osteoporosis)

            ·        Hair loss

            ·        Insomnia

            ·        Shrunken testes (don’t forget, your testosterone may drop below 20)

            ·        Gynecomastia (breast enlargement and tenderness)

            ·        Anemia

             

            I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 

             

            Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 

             

            I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.

             

            Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.

             

            In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.

             

            Best regards,

            DAVE


             

            From: Stew Dodge <stewdodge@...>
            To: protoninfo@yahoogroups.com
            Sent: Thursday, December 1, 2011 9:10 AM
            Subject: RE: [protoninfo] To New Member Stew

             

            Dave –

             

            Can you summarize hormone therapy side effects in your experience?

             

            Thanks Again…

             

            Stew

             

            From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
            Sent: Wednesday, November 30, 2011 8:18 PM
            To: protoninfo@yahoogroups.com
            Subject: Re: [protoninfo] To New Member Stew

             

             

            Hi Stew, 

             

            Let me place what I know in the following context:

             

            1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.

             

            2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 

             

            Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?

             

            3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.

             

            Best regards,

            DAVE

             

             

             

             

             

            From: Stew Dodge <stewdodge@...>
            To: protoninfo@yahoogroups.com
            Sent: Wednesday, November 30, 2011 7:34 PM
            Subject: RE: [protoninfo] To New Member Stew

             

            Dave –

             

            Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?

             

            Thanks again!!!!

             

            Stew

             

            From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
            Sent: Wednesday, November 30, 2011 4:45 PM
            To: protoninfo@yahoogroups.com
            Subject: [protoninfo] To New Member Stew

             

             

            As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.

             

            With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.

             

            The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)

             

            For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)

             

            By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)

             

            It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.

             

            The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)

             

            I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.

             

            As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.

             

            Stew, good luck.

             

            Best regards,

            DAVE

             

             

          • David Stevens
            Stew, if you have any more questions, please let me know. Best regards, DAVE ________________________________ From: Stew Dodge To:
            Message 5 of 13 , Dec 2, 2011
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            • 0 Attachment
              Stew, if you have any more questions, please let me know.
              Best regards,
              DAVE


              From: Stew Dodge <stewdodge@...>
              To: protoninfo@yahoogroups.com
              Sent: Friday, December 2, 2011 9:54 AM
              Subject: RE: [protoninfo] My experiences with leuprolide side effects

               
              Dave –
               
              I agree that experiencing ALL these side effects beats the hell out of the alternative.  Again, I really appreciate your time and expertise on these matters.
               
              Stew
               
              From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
              Sent: Thursday, December 01, 2011 2:46 PM
              To: protoninfo@yahoogroups.com
              Subject: [protoninfo] My experiences with leuprolide side effects
               
               
              Hi Stew,
               
              Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 
               
              Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):
               
              ·        Zero sex drive
              ·        Erectile dysfunction
              ·        Hot flashes
              ·        Weight gain
              ·        Shoulder pain
              ·        Loss of muscle mass
              ·        Fatigue
              ·        Depression and mood swings
              ·        Osteopenia (“junior version” of osteoporosis)
              ·        Hair loss
              ·        Insomnia
              ·        Shrunken testes (don’t forget, your testosterone may drop below 20)
              ·        Gynecomastia (breast enlargement and tenderness)
              ·        Anemia
               
              I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 
               
              Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 
               
              I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.
               
              Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.
               
              In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.
               
              Best regards,
              DAVE

               
              From: Stew Dodge <stewdodge@...>
              To: protoninfo@yahoogroups.com
              Sent: Thursday, December 1, 2011 9:10 AM
              Subject: RE: [protoninfo] To New Member Stew
               
              Dave –
               
              Can you summarize hormone therapy side effects in your experience?
               
              Thanks Again…
               
              Stew
               
              From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
              Sent: Wednesday, November 30, 2011 8:18 PM
              To: protoninfo@yahoogroups.com
              Subject: Re: [protoninfo] To New Member Stew
               
               
              Hi Stew, 
               
              Let me place what I know in the following context:
               
              1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.
               
              2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 
               
              Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?
               
              3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.
               
              Best regards,
              DAVE
               
               
               
               
               
              From: Stew Dodge <stewdodge@...>
              To: protoninfo@yahoogroups.com
              Sent: Wednesday, November 30, 2011 7:34 PM
              Subject: RE: [protoninfo] To New Member Stew
               
              Dave –
               
              Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?
               
              Thanks again!!!!
               
              Stew
               
              From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
              Sent: Wednesday, November 30, 2011 4:45 PM
              To: protoninfo@yahoogroups.com
              Subject: [protoninfo] To New Member Stew
               
               
              As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.
               
              With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.
               
              The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)
               
              For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)
               
              By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)
               
              It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.
               
              The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)
               
              I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.
               
              As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.
               
              Stew, good luck.
               
              Best regards,
              DAVE
               
               


            • Chris Ellefson
              Dave, Good summary. I have had many of those symptoms as well as a couple of others. The one that concerned me most was one that had no symptoms: High
              Message 6 of 13 , Dec 2, 2011
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                Dave,

                 

                Good summary.  I have had many of those symptoms as well as a couple of others.  The one that concerned me most was one that had no symptoms:  High cholesterol.  My cholesterol went from 170 pre-treatment to 290 in the first 5 months.  I just happened to get that result from a routine physical and a very good internist who read the side effects page on both leuprolide and bicalutamide and made sure that all the things that could go wrong were tested.  I began taking statins and it all returned to normal.

                 

                I had a scary side effect that is not in the literature, but was known to my ophthalmologist.  About a week into ADT, I began to experience very bright rings of colored light and would have to blink my eyes a few times and then it would go away.  I went to the internet and read that this is a symptom of detached retinas, so I immediately went to my ophthalmologist.  After a few tests, he asked me if I was on any kind of hormone therapy. When I said yes, he explained that I had ocular edema or water weight gain in my eyes. He said to just blink it off.

                 

                Exercise is very important but has been difficult for me.  I have difficulty getting started, but after about 5 minutes into running or walking, it gets much easier.  Not sure why, but I feel much better after exercise.

                 

                I thought that loss of sexual function would be the worst part of all this, but I have found that without testosterone I don’t have a sex drive and don’t  even miss sex.   Quite surprising.  I am distressed at the shrinkage, but am hoping that it is not permanent.

                 

                I finished my one year prescription for bicalutamide in October and lost 7 pounds in two days.  So I think I should have discussed that with my doctor.  It may be unhealthy to carry so much extra water and a simple diuretic may have helped a lot.

                 

                I completely agree and am fully convinced that everyone with the Gleason 5 Pattern 5 should make the sacrifice and complete at least 2 years of ADT.

                 

                For what it’s worth, A fellow Lupron Warrior, Chris

                 

                From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                Sent: Thursday, December 01, 2011 3:46 PM
                To: protoninfo@yahoogroups.com
                Subject: [protoninfo] My experiences with leuprolide side effects

                 

                 

                Hi Stew,

                 

                Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 

                 

                Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):

                 

                ·        Zero sex drive

                ·        Erectile dysfunction

                ·        Hot flashes

                ·        Weight gain

                ·        Shoulder pain

                ·        Loss of muscle mass

                ·        Fatigue

                ·        Depression and mood swings

                ·        Osteopenia (“junior version” of osteoporosis)

                ·        Hair loss

                ·        Insomnia

                ·        Shrunken testes (don’t forget, your testosterone may drop below 20)

                ·        Gynecomastia (breast enlargement and tenderness)

                ·        Anemia

                 

                I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 

                 

                Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 

                 

                I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.

                 

                Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.

                 

                In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.

                 

                Best regards,

                DAVE


                 

                From: Stew Dodge <stewdodge@...>
                To: protoninfo@yahoogroups.com
                Sent: Thursday, December 1, 2011 9:10 AM
                Subject: RE: [protoninfo] To New Member Stew

                 

                Dave –

                 

                Can you summarize hormone therapy side effects in your experience?

                 

                Thanks Again…

                 

                Stew

                 

                From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                Sent: Wednesday, November 30, 2011 8:18 PM
                To: protoninfo@yahoogroups.com
                Subject: Re: [protoninfo] To New Member Stew

                 

                 

                Hi Stew, 

                 

                Let me place what I know in the following context:

                 

                1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.

                 

                2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 

                 

                Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?

                 

                3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.

                 

                Best regards,

                DAVE

                 

                 

                 

                 

                 

                From: Stew Dodge <stewdodge@...>
                To: protoninfo@yahoogroups.com
                Sent: Wednesday, November 30, 2011 7:34 PM
                Subject: RE: [protoninfo] To New Member Stew

                 

                Dave –

                 

                Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?

                 

                Thanks again!!!!

                 

                Stew

                 

                From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                Sent: Wednesday, November 30, 2011 4:45 PM
                To: protoninfo@yahoogroups.com
                Subject: [protoninfo] To New Member Stew

                 

                 

                As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.

                 

                With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.

                 

                The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)

                 

                For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)

                 

                By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)

                 

                It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.

                 

                The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)

                 

                I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.

                 

                As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.

                 

                Stew, good luck.

                 

                Best regards,

                DAVE

                 

                 

              • David Stevens
                Stew, After emailing you the other day, I remembered something else. Previously, I mentioned how leuprolide normally shrinks the tumor and the prostate, and
                Message 7 of 13 , Dec 3, 2011
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                  Stew,
                  After emailing you the other day, I remembered something else.
                  Previously, I mentioned how leuprolide normally shrinks the tumor and the prostate, and that it is often administered two or three months before primary therapy begins. This was my experience with proton therapy.

                  However, if you have potential microscopic tumors located at the edge of your prostate, and the prostate volume shrinks from the hormone therapy, the result may be a potential nest of the disease remaining outside the shrunken tumor boundary. If the proton therapy (or surgery or IMRT, etc) is limited to the reduced prostate, that potential nest of disease outside the shrunken prostate may be missed by the protons. Now, you don't want that.

                  My doctor at MD Anderson, Andrew K. Lee discussed this topic in his 2004 article (co-authored with colleagues) entitled "Under-dosing of potential microscopic prostate cancer with IMRT after neoadjuvant hormonal therapy" in the International Journal of Radiation Oncology Biology and Physics.  I first saw this mentioned many months ago when I began digging into the subject of leuprolide and hormone therapy starting with Dr. Lee's 2006 review article entitled "Radiation Therapy Combined with Hormone Therapy for Prostate Cancer" in Seminars in Radiation Oncology, where he cites this. (Both articles, while addressing the issue in the context of IMRT should apply to proton therapy as well.)

                  This was not a problem for me, and it might not be a problem at all for you, but it's something worth asking your doctor to check.

                  Again, good luck, and keep us posted on how things are going.
                  If you have any other questions, please let me know.
                  Best regards,
                  DAVE







                  From: Stew Dodge <stewdodge@...>
                  To: protoninfo@yahoogroups.com
                  Sent: Friday, December 2, 2011 9:54 AM
                  Subject: RE: [protoninfo] My experiences with leuprolide side effects

                   
                  Dave –
                   
                  I agree that experiencing ALL these side effects beats the hell out of the alternative.  Again, I really appreciate your time and expertise on these matters.
                   
                  Stew
                   
                  From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                  Sent: Thursday, December 01, 2011 2:46 PM
                  To: protoninfo@yahoogroups.com
                  Subject: [protoninfo] My experiences with leuprolide side effects
                   
                   
                  Hi Stew,
                   
                  Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 
                   
                  Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):
                   
                  ·        Zero sex drive
                  ·        Erectile dysfunction
                  ·        Hot flashes
                  ·        Weight gain
                  ·        Shoulder pain
                  ·        Loss of muscle mass
                  ·        Fatigue
                  ·        Depression and mood swings
                  ·        Osteopenia (“junior version” of osteoporosis)
                  ·        Hair loss
                  ·        Insomnia
                  ·        Shrunken testes (don’t forget, your testosterone may drop below 20)
                  ·        Gynecomastia (breast enlargement and tenderness)
                  ·        Anemia
                   
                  I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 
                   
                  Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 
                   
                  I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.
                   
                  Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.
                   
                  In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.
                   
                  Best regards,
                  DAVE

                   
                  From: Stew Dodge <stewdodge@...>
                  To: protoninfo@yahoogroups.com
                  Sent: Thursday, December 1, 2011 9:10 AM
                  Subject: RE: [protoninfo] To New Member Stew
                   
                  Dave –
                   
                  Can you summarize hormone therapy side effects in your experience?
                   
                  Thanks Again…
                   
                  Stew
                   
                  From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                  Sent: Wednesday, November 30, 2011 8:18 PM
                  To: protoninfo@yahoogroups.com
                  Subject: Re: [protoninfo] To New Member Stew
                   
                   
                  Hi Stew, 
                   
                  Let me place what I know in the following context:
                   
                  1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.
                   
                  2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 
                   
                  Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?
                   
                  3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.
                   
                  Best regards,
                  DAVE
                   
                   
                   
                   
                   
                  From: Stew Dodge <stewdodge@...>
                  To: protoninfo@yahoogroups.com
                  Sent: Wednesday, November 30, 2011 7:34 PM
                  Subject: RE: [protoninfo] To New Member Stew
                   
                  Dave –
                   
                  Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?
                   
                  Thanks again!!!!
                   
                  Stew
                   
                  From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                  Sent: Wednesday, November 30, 2011 4:45 PM
                  To: protoninfo@yahoogroups.com
                  Subject: [protoninfo] To New Member Stew
                   
                   
                  As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.
                   
                  With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.
                   
                  The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)
                   
                  For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)
                   
                  By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)
                   
                  It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.
                   
                  The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)
                   
                  I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.
                   
                  As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.
                   
                  Stew, good luck.
                   
                  Best regards,
                  DAVE
                   
                   


                • Chris Ellefson
                  Dave, Is that why they began to put medium and high risk patients through the MRI machine? I know that Dr. Choi was confident from the MRI that there was a
                  Message 8 of 13 , Dec 3, 2011
                  View Source
                  • 0 Attachment

                    Dave,

                     

                    Is that why they began to put medium and high risk patients through the MRI machine?  I know that Dr. Choi was confident from the MRI that there was a very small likelihood that the cancer has spread beyond the prostate.

                     

                    Thanks, Chris

                     

                    From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                    Sent: Saturday, December 03, 2011 7:24 AM
                    To: protoninfo@yahoogroups.com
                    Subject: Re: [protoninfo] My experiences with leuprolide side effects

                     

                     

                    Stew,

                    After emailing you the other day, I remembered something else.

                    Previously, I mentioned how leuprolide normally shrinks the tumor and the prostate, and that it is often administered two or three months before primary therapy begins. This was my experience with proton therapy.

                     

                    However, if you have potential microscopic tumors located at the edge of your prostate, and the prostate volume shrinks from the hormone therapy, the result may be a potential nest of the disease remaining outside the shrunken tumor boundary. If the proton therapy (or surgery or IMRT, etc) is limited to the reduced prostate, that potential nest of disease outside the shrunken prostate may be missed by the protons. Now, you don't want that.

                     

                    My doctor at MD Anderson, Andrew K. Lee discussed this topic in his 2004 article (co-authored with colleagues) entitled "Under-dosing of potential microscopic prostate cancer with IMRT after neoadjuvant hormonal therapy" in the International Journal of Radiation Oncology Biology and Physics.  I first saw this mentioned many months ago when I began digging into the subject of leuprolide and hormone therapy starting with Dr. Lee's 2006 review article entitled "Radiation Therapy Combined with Hormone Therapy for Prostate Cancer" in Seminars in Radiation Oncology, where he cites this. (Both articles, while addressing the issue in the context of IMRT should apply to proton therapy as well.)

                     

                    This was not a problem for me, and it might not be a problem at all for you, but it's something worth asking your doctor to check.

                     

                    Again, good luck, and keep us posted on how things are going.

                    If you have any other questions, please let me know.

                    Best regards,

                    DAVE

                     

                     

                     

                     

                     

                     


                    From: Stew Dodge <stewdodge@...>
                    To: protoninfo@yahoogroups.com
                    Sent: Friday, December 2, 2011 9:54 AM
                    Subject: RE: [protoninfo] My experiences with leuprolide side effects

                     

                    Dave –

                     

                    I agree that experiencing ALL these side effects beats the hell out of the alternative.  Again, I really appreciate your time and expertise on these matters.

                     

                    Stew

                     

                    From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                    Sent: Thursday, December 01, 2011 2:46 PM
                    To: protoninfo@yahoogroups.com
                    Subject: [protoninfo] My experiences with leuprolide side effects

                     

                     

                    Hi Stew,

                     

                    Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 

                     

                    Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):

                     

                    ·        Zero sex drive

                    ·        Erectile dysfunction

                    ·        Hot flashes

                    ·        Weight gain

                    ·        Shoulder pain

                    ·        Loss of muscle mass

                    ·        Fatigue

                    ·        Depression and mood swings

                    ·        Osteopenia (“junior version” of osteoporosis)

                    ·        Hair loss

                    ·        Insomnia

                    ·        Shrunken testes (don’t forget, your testosterone may drop below 20)

                    ·        Gynecomastia (breast enlargement and tenderness)

                    ·        Anemia

                     

                    I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 

                     

                    Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 

                     

                    I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.

                     

                    Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.

                     

                    In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.

                     

                    Best regards,

                    DAVE


                     

                    From: Stew Dodge <stewdodge@...>
                    To: protoninfo@yahoogroups.com
                    Sent: Thursday, December 1, 2011 9:10 AM
                    Subject: RE: [protoninfo] To New Member Stew

                     

                    Dave –

                     

                    Can you summarize hormone therapy side effects in your experience?

                     

                    Thanks Again…

                     

                    Stew

                     

                    From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                    Sent: Wednesday, November 30, 2011 8:18 PM
                    To: protoninfo@yahoogroups.com
                    Subject: Re: [protoninfo] To New Member Stew

                     

                     

                    Hi Stew, 

                     

                    Let me place what I know in the following context:

                     

                    1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.

                     

                    2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 

                     

                    Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?

                     

                    3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.

                     

                    Best regards,

                    DAVE

                     

                     

                     

                     

                     

                    From: Stew Dodge <stewdodge@...>
                    To: protoninfo@yahoogroups.com
                    Sent: Wednesday, November 30, 2011 7:34 PM
                    Subject: RE: [protoninfo] To New Member Stew

                     

                    Dave –

                     

                    Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?

                     

                    Thanks again!!!!

                     

                    Stew

                     

                    From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                    Sent: Wednesday, November 30, 2011 4:45 PM
                    To: protoninfo@yahoogroups.com
                    Subject: [protoninfo] To New Member Stew

                     

                     

                    As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.

                     

                    With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.

                     

                    The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)

                     

                    For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)

                     

                    By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)

                     

                    It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.

                     

                    The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)

                     

                    I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.

                     

                    As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.

                     

                    Stew, good luck.

                     

                    Best regards,

                    DAVE

                     

                     

                     

                  • David Stevens
                    Stew, My doctor, Andrew Lee confirms that at MDACC proton center, we always treat the prostate + a margin of tissue around it so that we can capture
                    Message 9 of 13 , Dec 4, 2011
                    View Source
                    • 0 Attachment
                      Stew,
                      My doctor, Andrew Lee confirms that at MDACC proton center, "we always treat the prostate + a margin of tissue around it so that we can capture microscopic disease." So while the issue I raised yesterday (see below) is a valid consideration, it is fully taken into account in the proton treatment here.

                      Remember, however, that the microscopic disease we're talking about in yesterday's email and in this email about proton treatment is microscopic disease in the prostate and a margin of tissue around it. That is altogether different from distant microscopic disease elsewhere in the body, for which I and other Gleason Pattern 5's are or have been on hormone therapy.

                      Regards,
                      DAVE STEVENS

                      ----- Forwarded Message -----
                      From: David Stevens <davestevens.houstonattorneycpa@...>
                      To: "protoninfo@yahoogroups.com" <protoninfo@yahoogroups.com>
                      Sent: Saturday, December 3, 2011 8:23 AM
                      Subject: Re: [protoninfo] My experiences with leuprolide side effects

                      Stew,
                      After emailing you the other day, I remembered something else.
                      Previously, I mentioned how leuprolide normally shrinks the tumor and the prostate, and that it is often administered two or three months before primary therapy begins. This was my experience with proton therapy.

                      However, if you have potential microscopic tumors located at the edge of your prostate, and the prostate volume shrinks from the hormone therapy, the result may be a potential nest of the disease remaining outside the shrunken tumor boundary. If the proton therapy (or surgery or IMRT, etc) is limited to the reduced prostate, that potential nest of disease outside the shrunken prostate may be missed by the protons. Now, you don't want that.

                      My doctor at MD Anderson, Andrew K. Lee discussed this topic in his 2004 article (co-authored with colleagues) entitled "Under-dosing of potential microscopic prostate cancer with IMRT after neoadjuvant hormonal therapy" in the International Journal of Radiation Oncology Biology and Physics.  I first saw this mentioned many months ago when I began digging into the subject of leuprolide and hormone therapy starting with Dr. Lee's 2006 review article entitled "Radiation Therapy Combined with Hormone Therapy for Prostate Cancer" in Seminars in Radiation Oncology, where he cites this. (Both articles, while addressing the issue in the context of IMRT should apply to proton therapy as well.)

                      This was not a problem for me, and it might not be a problem at all for you, but it's something worth asking your doctor to check.

                      Again, good luck, and keep us posted on how things are going.
                      If you have any other questions, please let me know.
                      Best regards,
                      DAVE







                      From: Stew Dodge <stewdodge@...>
                      To: protoninfo@yahoogroups.com
                      Sent: Friday, December 2, 2011 9:54 AM
                      Subject: RE: [protoninfo] My experiences with leuprolide side effects

                       
                      Dave –
                       
                      I agree that experiencing ALL these side effects beats the hell out of the alternative.  Again, I really appreciate your time and expertise on these matters.
                       
                      Stew
                       
                      From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                      Sent: Thursday, December 01, 2011 2:46 PM
                      To: protoninfo@yahoogroups.com
                      Subject: [protoninfo] My experiences with leuprolide side effects
                       
                       
                      Hi Stew,
                       
                      Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 
                       
                      Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):
                       
                      ·        Zero sex drive
                      ·        Erectile dysfunction
                      ·        Hot flashes
                      ·        Weight gain
                      ·        Shoulder pain
                      ·        Loss of muscle mass
                      ·        Fatigue
                      ·        Depression and mood swings
                      ·        Osteopenia (“junior version” of osteoporosis)
                      ·        Hair loss
                      ·        Insomnia
                      ·        Shrunken testes (don’t forget, your testosterone may drop below 20)
                      ·        Gynecomastia (breast enlargement and tenderness)
                      ·        Anemia
                       
                      I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 
                       
                      Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 
                       
                      I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.
                       
                      Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.
                       
                      In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.
                       
                      Best regards,
                      DAVE

                       
                      From: Stew Dodge <stewdodge@...>
                      To: protoninfo@yahoogroups.com
                      Sent: Thursday, December 1, 2011 9:10 AM
                      Subject: RE: [protoninfo] To New Member Stew
                       
                      Dave –
                       
                      Can you summarize hormone therapy side effects in your experience?
                       
                      Thanks Again…
                       
                      Stew
                       
                      From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                      Sent: Wednesday, November 30, 2011 8:18 PM
                      To: protoninfo@yahoogroups.com
                      Subject: Re: [protoninfo] To New Member Stew
                       
                       
                      Hi Stew, 
                       
                      Let me place what I know in the following context:
                       
                      1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.
                       
                      2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 
                       
                      Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?
                       
                      3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.
                       
                      Best regards,
                      DAVE
                       
                       
                       
                       
                       
                      From: Stew Dodge <stewdodge@...>
                      To: protoninfo@yahoogroups.com
                      Sent: Wednesday, November 30, 2011 7:34 PM
                      Subject: RE: [protoninfo] To New Member Stew
                       
                      Dave –
                       
                      Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?
                       
                      Thanks again!!!!
                       
                      Stew
                       
                      From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                      Sent: Wednesday, November 30, 2011 4:45 PM
                      To: protoninfo@yahoogroups.com
                      Subject: [protoninfo] To New Member Stew
                       
                       
                      As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.
                       
                      With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.
                       
                      The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)
                       
                      For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)
                       
                      By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)
                       
                      It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.
                       
                      The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)
                       
                      I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.
                       
                      As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.
                       
                      Stew, good luck.
                       
                      Best regards,
                      DAVE
                       
                       




                    • Stew Dodge
                      Dave Copy that! I understand….. Stew From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens Sent: Sunday, December
                      Message 10 of 13 , Dec 4, 2011
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                        Dave

                         

                        Copy that!  I understand…..

                         

                        Stew

                         

                        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                        Sent: Sunday, December 04, 2011 4:19 PM
                        To: protoninfo@yahoogroups.com
                        Subject: Fw: [protoninfo] My experiences with leuprolide side effects

                         

                         

                        Stew,

                        My doctor, Andrew Lee confirms that at MDACC proton center, "we always treat the prostate + a margin of tissue around it so that we can capture microscopic disease." So while the issue I raised yesterday (see below) is a valid consideration, it is fully taken into account in the proton treatment here.

                         

                        Remember, however, that the microscopic disease we're talking about in yesterday's email and in this email about proton treatment is microscopic disease in the prostate and a margin of tissue around it. That is altogether different from distant microscopic disease elsewhere in the body, for which I and other Gleason Pattern 5's are or have been on hormone therapy.

                         

                        Regards,

                        DAVE STEVENS

                         

                        ----- Forwarded Message -----
                        From: David Stevens <davestevens.houstonattorneycpa@...>
                        To: "protoninfo@yahoogroups.com" <protoninfo@yahoogroups.com>
                        Sent: Saturday, December 3, 2011 8:23 AM
                        Subject: Re: [protoninfo] My experiences with leuprolide side effects

                        Stew,

                        After emailing you the other day, I remembered something else.

                        Previously, I mentioned how leuprolide normally shrinks the tumor and the prostate, and that it is often administered two or three months before primary therapy begins. This was my experience with proton therapy.

                         

                        However, if you have potential microscopic tumors located at the edge of your prostate, and the prostate volume shrinks from the hormone therapy, the result may be a potential nest of the disease remaining outside the shrunken tumor boundary. If the proton therapy (or surgery or IMRT, etc) is limited to the reduced prostate, that potential nest of disease outside the shrunken prostate may be missed by the protons. Now, you don't want that.

                         

                        My doctor at MD Anderson, Andrew K. Lee discussed this topic in his 2004 article (co-authored with colleagues) entitled "Under-dosing of potential microscopic prostate cancer with IMRT after neoadjuvant hormonal therapy" in the International Journal of Radiation Oncology Biology and Physics.  I first saw this mentioned many months ago when I began digging into the subject of leuprolide and hormone therapy starting with Dr. Lee's 2006 review article entitled "Radiation Therapy Combined with Hormone Therapy for Prostate Cancer" in Seminars in Radiation Oncology, where he cites this. (Both articles, while addressing the issue in the context of IMRT should apply to proton therapy as well.)

                         

                        This was not a problem for me, and it might not be a problem at all for you, but it's something worth asking your doctor to check.

                         

                        Again, good luck, and keep us posted on how things are going.

                        If you have any other questions, please let me know.

                        Best regards,

                        DAVE

                         

                         

                         

                         

                         

                         


                        From: Stew Dodge <stewdodge@...>
                        To: protoninfo@yahoogroups.com
                        Sent: Friday, December 2, 2011 9:54 AM
                        Subject: RE: [protoninfo] My experiences with leuprolide side effects

                         

                        Dave –

                         

                        I agree that experiencing ALL these side effects beats the hell out of the alternative.  Again, I really appreciate your time and expertise on these matters.

                         

                        Stew

                         

                        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                        Sent: Thursday, December 01, 2011 2:46 PM
                        To: protoninfo@yahoogroups.com
                        Subject: [protoninfo] My experiences with leuprolide side effects

                         

                         

                        Hi Stew,

                         

                        Yes, there are side effects to hormone therapy and I have had many of them, perhaps more than my share. Not everyone has all of them. Different men have different side effects, and different levels of side effects. Thus, one man’s hot flashes may be a major inconvenience, but another man’s hot flashes may be tolerable without medication. 

                         

                        Here are some of the side effects of leuprolide (Lupron) I have seen mentioned in the medical literature (not a complete list):

                         

                        ·        Zero sex drive

                        ·        Erectile dysfunction

                        ·        Hot flashes

                        ·        Weight gain

                        ·        Shoulder pain

                        ·        Loss of muscle mass

                        ·        Fatigue

                        ·        Depression and mood swings

                        ·        Osteopenia (“junior version” of osteoporosis)

                        ·        Hair loss

                        ·        Insomnia

                        ·        Shrunken testes (don’t forget, your testosterone may drop below 20)

                        ·        Gynecomastia (breast enlargement and tenderness)

                        ·        Anemia

                         

                        I have had all of these in varying degrees except gynecomastia and anemia. The medical literature I have seen suggests that most are treatable (for some, erectile dysfunction and zero sex drive are the notable exceptions), either through medication, or through vitamin supplements, or through dieting, and resistance and aerobic exercise several times per week. 

                         

                        Based on my own experience on leuprolide (Lupron), the hormone therapy I have been on here at MD Anderson’s Proton Therapy Center, the best advice I can give is that if you have a problem, contact your proton therapy doctor, since the problem might be related to the hormone therapy you’re on. The doctors here at MD Anderson are easy to reach by email or phone and will respond quickly to a problem.  (Don't begin your inquiry into all this on the internet first, like I did initially.) And contact your doctor where you are getting your proton therapy, who will likely be more familiar with hormone therapy side effects than your home town internist. 

                         

                        I hope this helps, however I am not a doctor. I have related my own experiences, but they should not be relied on as medical advice. There is no substitute for the advice of a competent and experienced physician.

                         

                        Almost forgot: The bald spot on the crown of my head gradually covered itself over with hair after only eight months of leuprolide. So it’s not all bad.

                         

                        In sum, and for myself, I choose to stay on leuprolide for the two year stint my doctor has prescribed, despite these side effects. I want to prevent my Gleason Pattern 5 from eventually killing me, and also reduce my risk of a future relapse that might potentially result in me being on leuprolide for longer than two years.

                         

                        Best regards,

                        DAVE


                         

                        From: Stew Dodge <stewdodge@...>
                        To: protoninfo@yahoogroups.com
                        Sent: Thursday, December 1, 2011 9:10 AM
                        Subject: RE: [protoninfo] To New Member Stew

                         

                        Dave –

                         

                        Can you summarize hormone therapy side effects in your experience?

                         

                        Thanks Again…

                         

                        Stew

                         

                        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                        Sent: Wednesday, November 30, 2011 8:18 PM
                        To: protoninfo@yahoogroups.com
                        Subject: Re: [protoninfo] To New Member Stew

                         

                         

                        Hi Stew, 

                         

                        Let me place what I know in the following context:

                         

                        1. As I understand the Gleason Pattern 5 environment in which you and I now exist, the strategy against PCa is a two prong process: (a) local control of the prostate where the PCa there is "taken out" so to speak by proton therapy, and (b) suppressing the PCa cells floating around in the rest of our bodies, and preventing them from establishing colonies distant from the prostate (i.e., metastasis.) Protons and photons work for prong (a), but not prong (b). That is where hormone therapy comes in. Neo-adjuvant application of leuprolide [Lupron] or goserelin for two to three months prior to treatment does this, by (a) shrinking the prostate itself and tumors locally within 2-3 months, and (b) spreading around the rest of the body and suppressing or killing PCa cells where they are found, which takes a lot more time for Gleason Pattern 5's. With a Gleason Pattern 5, it is likely that some of those "outlier" cells are floating around outside the prostate; certainly the formation of distant metastases within 5 years suggests the presence of those cells at the time of diagnosis.

                         

                        2. In the context of #1, the question becomes "how is proton + photon better than protons alone, assuming your treatment center can administer as high a dose of protons as is clinically safe." As I understand it, the advantage lies with protons. Due to the Bragg curve and other features, protons are far more flexible and able to be targeted than photons. Because protons can be more accurately aimed away from sensitive tissue than photons, protons make it possible to provide a higher dose of GyE with less toxicity side effects than photons, assuming an accurate equivalency between GyE and Gy. 

                         

                        Even if the difference between protons and photons is one that only exists due to lower potential toxicity in the bladder and rectum using protons, that suggests protons and photons are equal; but why use photons at all if you have protons? How are photons better than protons?

                         

                        3. Now, I have read both proton and photon were used in the 1990's in the LLUMC Slater 2004 article, along with other articles. However, LLUMC switched to all protons during the later portion of the period covered by the LLUMC 2004 article. Offhand, I cannot recall reading about any situation in today's high-dose environment where photons of a given Gy are more effective against PCa than protons of the same GyE, but this may be more of an indication of the limits of my reading. Consequently, if you (or anyone else) have come across any answers, please let me know. I would appreciate being enlightened.

                         

                        Best regards,

                        DAVE

                         

                         

                         

                         

                         

                        From: Stew Dodge <stewdodge@...>
                        To: protoninfo@yahoogroups.com
                        Sent: Wednesday, November 30, 2011 7:34 PM
                        Subject: RE: [protoninfo] To New Member Stew

                         

                        Dave –

                         

                        Thanks much for the info.  One question: how about Photon?  Most 9’s I read about did the triple – Proton, Photon, Hormone.  Any thoughts?

                         

                        Thanks again!!!!

                         

                        Stew

                         

                        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of David Stevens
                        Sent: Wednesday, November 30, 2011 4:45 PM
                        To: protoninfo@yahoogroups.com
                        Subject: [protoninfo] To New Member Stew

                         

                         

                        As a Gleason 9 (i.e., primary Gleason Pattern 4+ secondary Gleason Pattern 5) myself, with a pre-treatment PSA of nearly 9, and stage T1c, I have read Stew’s emails with interest, since he says he has a similar Gleason 4 + Gleason 5 to mine. I finished up 39 treatments of proton therapy at MD Anderson with a total of 78 GyE early this past January, but am on a two year hormone stint that ends in August 2012.

                         

                        With a Gleason Pattern 5 making up part of my Gleason 9, I found quite sobering an article published online earlier this month in the International Journal of Radiation Oncology, Biology and Physics entitled “Gleason Pattern 5 is the Greatest Risk Factor for Clinical Failure and Death from Prostate Cancer after Dose-Escalated Radiation Therapy and Hormonal Ablation.” It points up the fact that, despite all you hear and read about hormone therapy side effects (most of which can be dealt with), and all the talk about high dose radiation therapy potentially minimizing the need for hormone therapy, it is positively dangerous to refuse hormone therapy if you have a Gleason Pattern 5.

                         

                        The article reported on a study of 718 men treated for localized prostate cancer with external beam radiation therapy to a minimum target volume dose of at least 75 Gy. Of that total, 76 men had a Gleason Pattern 5 (i.e., either a Gleason Pattern 5 and a 3, a 5 and a 4, or two Gleason Pattern 5’s.)

                         

                        For those men with a Gleason Pattern 5 who did not have hormone therapy, the median freedom from metastasis five years after treatment was only 25%; the median cause-specific [i.e., prostate cancer related] survival was only 65% and the median overall survival was only 55%. (Fig 3D, 3F and 3H, page e.356)

                         

                        By contrast, hormone therapy was associated with a median freedom from metastasis five years after treatment of 70%; a median cause-specific survival of  75% and a median overall survival of 65%. (Fig 3D, 3F and 3H, page e.356). Although the time of hormone therapy for the 76 men with Gleason Pattern 5 ranged from 8.2 months to 27.9 months, the median was 24.4 months. The authors of the article opined that hormone therapy of 24 months or more “seemed to decrease the risk of all-cause mortality [overall survival].” (page e.358)

                         

                        It’s worth pointing out that the poor results for Gleason Pattern 5 men who did not have hormone therapy resulted, despite the 77-78.3Gy, in 1.8 to 2.0 Gy doses, and despite the fact they got radiation to the pelvic lymph nodes, prostate and seminal vesicles followed by a boost to the prostate and seminal vesicles.

                         

                        The authors of this study also conclude that when you have a Gleason Pattern 5, the results are the same whether the Pattern 5 is a primary or secondary one (although other studies take a different view.)

                         

                        I am not a doctor, and I do not give medical advice. However, I have gained some acquaintance with some of the medical literature in this area over the past several months.

                         

                        As one with a Gleason Pattern 5, I am glad my doctor offered and I accepted two years of hormone therapy (spanning a period before, during and after my proton therapy), despite its side effects.

                         

                        Stew, good luck.

                         

                        Best regards,

                        DAVE

                         

                         

                         

                         

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