Loading ...
Sorry, an error occurred while loading the content.

Re: [protoninfo] Re: Welcome new member "Bumble"

Expand Messages
  • Steven Sienkiewicz
    Chris, I am not sorry for doing it, the ADT did not really disrupt my life all that much, it made it a bit more uncomfortable. The main reason I wanted off of
    Message 1 of 8 , Sep 1, 2011
    View Source
    • 0 Attachment
      Chris,
       I am not sorry for doing it, the ADT did not really disrupt my life all that much, it made it a bit more uncomfortable. The main reason I wanted off  of it is the harm it could be doing to the rest of me.

      If I was certain staying  on it for 1.5 more years would have significant benefits I would have.

      I changed my diet a lot I think this helped quite a bit. I have been not eating red meat or dairy mostly for 2 years. Recently I went on a 15 day vegan / juice diet and dropped 15 lbs. I am jogging regularly although very slowly. It was very tempting to just eat my troubles away and at times was difficult no to. After all , I have cancer who would blame me.

      But today I am thinner and feel as strong as ever, if the Pca stays away, it will just have been an expensive speed bump on my road of life

      I do have issues with frequent urination , which returned about 2 months after radiation. I believe is a side effect of the radiation, this is more annoying than anything . 

      Hope yours goes well too.

      Steve

      On Aug 31, 2011, at 11:45 PM, Chris Ellefson <csellefson@...> wrote:

       

      Steve,

       

      Thanks for posting that.  Its helps with my resolve to finish my program.  I have been on Lupron Depot and generic Casodex for 11.5 months now.  [Casodex because I had one biopsy core with Gleason 9 (4+5) and some irregular bone growth in one of my toes.]  I will finish the Casodex at end of Sept, but have a prescription for Lupron for another year.  It is good to hear that you are mostly back to normal.  The muscle weakness is the worst for me and I have not been as good as you about exercising.

       

      I asked my doctor at MDA: why two years on Lupron?  His response was that studies have shown that 3 years on ADT versus 1 year is statistically better in terms of survival and remission.  So, since MDA was a research hospital, he was asking me to consider 2 years. The thesis is that 2 years will provide the same benefit as 3 years.   I have seen some of the studies that show the difference between 1 and 3 years, but although statistically significant, the absolute difference is not large.

       

      We have a 95 year old guy who chairs our Prostate Cancer Survivor Group here in Tucson who had surgery back in 1985 and then had increasing PSA so he went on intermittent ADT.  I think it was 9 months on and then 9 months off to watch for PSA build up.  He did that 3 times and then his PSA went to near zero and he has been well ever since.  He highly recommended the punctuated approach as it worked for him.

       

      My side effects have been very similar to Dave’s, but I had an interesting side effect that my MDA doctors were not aware of.  Soon after starting the ADT program I started experiencing very bright and colorful rings upon waking each morning.  It would go away after 4 or 5 blinks.  I looked it up on the internet and it suggested that I had a retina starting to detach.  So, I went to an ophthalmologist and he said since it was occurring in both eyes that it wasn’t a retina problem.  He asked if I was taking any steroids or hormones.  And of course that was the problem.  He said he saw the problem occasionally, but mostly in women who were on some sort of hormone therapy.  He called it ocular edema (water weight gain in the eyes) and basically said to blink it off.

       

      A more serious problem for me was that my cholesterol went from about 170 up to nearly 300 in a very short period of time.  My doctor put me on Crestor and the problem resolved right away.  I felt better too.

       

      I would love to hear about your progress over the next 1 to 2 years.  I have been considering whether it is worth the health benefits to go another year or not.  My wife wants me to follow the program, but it is a difficult row to hoe.

       

      Cheers, Chris

       

      From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of Steven Sienkiewicz
      Sent: Tuesday, August 30, 2011 10:24 PM
      To: protoninfo@yahoogroups.com
      Subject: [protoninfo] Re: Welcome new member "Bumble"

       

       

      I was on Lupron, casodex for 18 months. 6 months of it before proton tx.
      My psa went from 9.x to .02 in about 5 months,, the tumor was almost gone before radiation. I was geason 7-8, T3aN0M0. evidence of tumor in the capsule. I have remained at .02 or less since , it is now 4 months plus after stopping ADT.
      my side effects were ED - still not returned to normal but much better , 0 libido - now much better, some of the following, none to a severe degree: hot flashes- gone now; muscle weakness - but maintained jogging throughout - now near normal; added some flab - now all gone - through vegan diet and continued excecise; tiredness - much better but not sleeping well now; hair loss to chest and legs.
      My drs here recommended 2 and 3 years of ADT, neither could explain why other than is the standard here. One dr. In Okinawa , one in Tokyo .
      I did my own research and decided I did not need another 1.5 years on ADT . So I stopped.
      They will not test for testosterone here, but I can tell a lot of mine is back. Hot flashes gone, hair returned. Psa .02 after quitting ADT end of mar. this yr.
      All in all I would say my side effects were tolerable . I don't want to go back on it but I think I can still enjoy my life if I have to.

      Steve

    • jwwright
      Hi Steven, I wasn t on ADT and wasn t offered ADT, but I m believe there are cancer benefits other than prostate. The question in my mind is with a rising
      Message 2 of 8 , Sep 1, 2011
      View Source
      • 0 Attachment
        
        Hi Steven,
        I wasn't on ADT and wasn't offered ADT, but I'm believe there are cancer benefits other than prostate.
        The question in my mind is with a rising Testosterone level, is there data to show a benefit?
         
        for PCa:
        Intermittent Androgen Deprivation Therapy: Redefining the Standard of Care?
         
        Regards.
         
         
        ----- Original Message -----
        Sent: Thursday, September 01, 2011 6:51 AM
        Subject: Re: [protoninfo] Re: Welcome new member "Bumble"

         

        Chris,
         I am not sorry for doing it, the ADT did not really disrupt my life all that much, it made it a bit more uncomfortable. The main reason I wanted off  of it is the harm it could be doing to the rest of me.

        If I was certain staying  on it for 1.5 more years would have significant benefits I would have.

        I changed my diet a lot I think this helped quite a bit. I have been not eating red meat or dairy mostly for 2 years. Recently I went on a 15 day vegan / juice diet and dropped 15 lbs. I am jogging regularly although very slowly. It was very tempting to just eat my troubles away and at times was difficult no to. After all , I have cancer who would blame me.

        But today I am thinner and feel as strong as ever, if the Pca stays away, it will just have been an expensive speed bump on my road of life

        I do have issues with frequent urination , which returned about 2 months after radiation. I believe is a side effect of the radiation, this is more annoying than anything . 

        Hope yours goes well too.

        Steve

        On Aug 31, 2011, at 11:45 PM, Chris Ellefson <csellefson@...> wrote:

         

        Steve,

        Thanks for posting that.  Its helps with my resolve to finish my program.  I have been on Lupron Depot and generic Casodex for 11.5 months now.  [Casodex because I had one biopsy core with Gleason 9 (4+5) and some irregular bone growth in one of my toes.]  I will finish the Casodex at end of Sept, but have a prescription for Lupron for another year.  It is good to hear that you are mostly back to normal.  The muscle weakness is the worst for me and I have not been as good as you about exercising.

        I asked my doctor at MDA: why two years on Lupron?  His response was that studies have shown that 3 years on ADT versus 1 year is statistically better in terms of survival and remission.  So, since MDA was a research hospital, he was asking me to consider 2 years. The thesis is that 2 years will provide the same benefit as 3 years.   I have seen some of the studies that show the difference between 1 and 3 years, but although statistically significant, the absolute difference is not large.

        We have a 95 year old guy who chairs our Prostate Cancer Survivor Group here in Tucson who had surgery back in 1985 and then had increasing PSA so he went on intermittent ADT.  I think it was 9 months on and then 9 months off to watch for PSA build up.  He did that 3 times and then his PSA went to near zero and he has been well ever since.  He highly recommended the punctuated approach as it worked for him.

        My side effects have been very similar to Dave’s, but I had an interesting side effect that my MDA doctors were not aware of.  Soon after starting the ADT program I started experiencing very bright and colorful rings upon waking each morning.  It would go away after 4 or 5 blinks.  I looked it up on the internet and it suggested that I had a retina starting to detach.  So, I went to an ophthalmologist and he said since it was occurring in both eyes that it wasn’t a retina problem.  He asked if I was taking any steroids or hormones.  And of course that was the problem.  He said he saw the problem occasionally, but mostly in women who were on some sort of hormone therapy.  He called it ocular edema (water weight gain in the eyes) and basically said to blink it off.

        A more serious problem for me was that my cholesterol went from about 170 up to nearly 300 in a very short period of time.  My doctor put me on Crestor and the problem resolved right away.  I felt better too.

        I would love to hear about your progress over the next 1 to 2 years.  I have been considering whether it is worth the health benefits to go another year or not.  My wife wants me to follow the program, but it is a difficult row to hoe.

        Cheers, Chris

        From: protoninfo@yahoogroups.com [mailto:protoninfo@yahoogroups.com] On Behalf Of Steven Sienkiewicz
        Sent: Tuesday, August 30, 2011 10:24 PM
        To: protoninfo@yahoogroups.com
        Subject: [protoninfo] Re: Welcome new member "Bumble"

         

        I was on Lupron, casodex for 18 months. 6 months of it before proton tx.
        My psa went from 9.x to .02 in about 5 months,, the tumor was almost gone before radiation. I was geason 7-8, T3aN0M0. evidence of tumor in the capsule. I have remained at .02 or less since , it is now 4 months plus after stopping ADT.
        my side effects were ED - still not returned to normal but much better , 0 libido - now much better, some of the following, none to a severe degree: hot flashes- gone now; muscle weakness - but maintained jogging throughout - now near normal; added some flab - now all gone - through vegan diet and continued excecise; tiredness - much better but not sleeping well now; hair loss to chest and legs.
        My drs here recommended 2 and 3 years of ADT, neither could explain why other than is the standard here. One dr. In Okinawa , one in Tokyo .
        I did my own research and decided I did not need another 1.5 years on ADT . So I stopped.
        They will not test for testosterone here, but I can tell a lot of mine is back. Hot flashes gone, hair returned. Psa .02 after quitting ADT end of mar. this yr.
        All in all I would say my side effects were tolerable . I don't want to go back on it but I think I can still enjoy my life if I have to.

        Steve

        .


        __________ Information from ESET NOD32 Antivirus, version of virus signature database 6425 (20110831) __________

        The message was checked by ESET NOD32 Antivirus.

        http://www.eset.com
      Your message has been successfully submitted and would be delivered to recipients shortly.