GOING FOR PROTON

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Comments

  • Trew
    Trew Member Posts: 932 Member

    Brotherhood of trhe Balloon (BOB)
    I read Robert Marckini's book and learned about BOB from it. I'm sure you and all of the members of BOB are GREAT guys, but frankly there are other ways that I'd prefer to bond w/you.

    Having PCa in common is bad enough, but basing a relationship on the fact that you all have had a balloon stuck up your behind 40-45 times while being zapped w/protons while encased in a body cast just isn't what I have in mind when I think of "male bonding" and, I for one, am not sorry that I missed it.

    ROTFLMAO!!!

    So Sorry You Missed it
    SSW, Getting the balloon inserted into the behind is a lot more fun than the way you make it sound. Believe me, I was there and you really missed a great experience!! All patients rave about it. Itsort of gives you the rush of an enema feeling without the mess. There, that should settle your doubts about the pleasure of such an experience. Nice is as nice does. I know, a meaningless statement, but I use it to elevated the value of the balloon experience above the so-so stuff that we face every day.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Trew said:

    So Sorry You Missed it
    SSW, Getting the balloon inserted into the behind is a lot more fun than the way you make it sound. Believe me, I was there and you really missed a great experience!! All patients rave about it. Itsort of gives you the rush of an enema feeling without the mess. There, that should settle your doubts about the pleasure of such an experience. Nice is as nice does. I know, a meaningless statement, but I use it to elevated the value of the balloon experience above the so-so stuff that we face every day.

    LOL!
    I could take this "discussion" about balloons in the behind to another level, but I just won't go there. Thanks for your condolences, but it's just one of those GREAT experiences that I'll have to miss out on in life. ;)
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Trew said:

    So Sorry You Missed it
    SSW, Getting the balloon inserted into the behind is a lot more fun than the way you make it sound. Believe me, I was there and you really missed a great experience!! All patients rave about it. Itsort of gives you the rush of an enema feeling without the mess. There, that should settle your doubts about the pleasure of such an experience. Nice is as nice does. I know, a meaningless statement, but I use it to elevated the value of the balloon experience above the so-so stuff that we face every day.

    Balloons...yes, yes
    I heard of recreational drugs......I guess, the future is now recreational balloons.
  • Trew
    Trew Member Posts: 932 Member

    Balloons...yes, yes
    I heard of recreational drugs......I guess, the future is now recreational balloons.

    The fun part is in the end
    The fun part is in the end after treatment when all male parts are still loaded and functioning. So, to avoid a balloon up the rectum, you would give up WHAT?

    Besides, it very well may be a whole lot more fun than it sounds.
  • Trew
    Trew Member Posts: 932 Member
    Trew said:

    SSW, One gets use to the balloon pretty quickly and it is actually a bonding experience among patients. You can imagine the comments, perhaps, that such an experience generates, and it is a good diversion from all the cancer stuff around you.

    I"m sorry you missed it. LOL

    I want to clarify something
    I want to clarify something for everyone: That balloon up the rectum really wasn't THAT much fun.

    I don't want anyone to come to the wrong conclusion about that unique experience. like a lot o thngs connected to cancer, it is just something else that one must endure along the way.
  • Feb2010
    Feb2010 Member Posts: 51

    Hang Tough!
    I am coming to LLUMC from Northern Calif on Monday. This will be my annual inspection. I did 20 trips to the gantry last August. PSA started at 6.8, now 1.4! No side effects. No problems. Take it easy Trew. You are not there by accident. God has a hand in this! I am now involved in the Cancer Relay For Life in my town. I am the online chair. Our team theme is MASH! See: http://main.acsevents.org/goto/mash We will raise $4077 this year. Get it? MASH 4077? Heh.

    Great to hear George!
    Take care and keep in touch.
  • Feb2010
    Feb2010 Member Posts: 51

    Hope it works out for you!
    The 45 day and 45 balloons was one of the reasons I chose CyberKnife over Proton Beam Therapy -- not the only reason, but one of a critical few.

    That said, it was my 2nd choice and heard generally good things about it. Hope it all works out for you in the end.

    Good luck!

    Hello SwingShift
    The balloons were not too bad. How are you doing,PSA checks and all?
    I'll post updates as I go along.
    Take care
  • Feb2010
    Feb2010 Member Posts: 51

    Balloons...yes, yes
    I heard of recreational drugs......I guess, the future is now recreational balloons.

    LOL
    I even received a souvenir balloon. Unused of course!
  • Feb2010
    Feb2010 Member Posts: 51
    drbrr said:

    UF
    I did my proton therapy in the summer of '08 at UF Jacksonville. The wait at LL was far too long, and frankly I wanted the newer equipment. Most all the places are equally good. My experience at JAX was extremely positive. We loved Jacksonville, and the center was one of the most positive places I've ever been in.

    HOW ARE YOU DOING?
    Any complications? I just finished mine at LLUMC last month.
  • ROTH
    ROTH Member Posts: 1
    Trew said:

    I want to clarify something
    I want to clarify something for everyone: That balloon up the rectum really wasn't THAT much fun.

    I don't want anyone to come to the wrong conclusion about that unique experience. like a lot o thngs connected to cancer, it is just something else that one must endure along the way.

    considering proton


    what were your reasons for choosing proton therapy instead of radiation therapy?










































    do you know of any side effects? Also is the equipment up to date?
    would appreciate you and the other posters giving me any information.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    ROTH said:

    considering proton


    what were your reasons for choosing proton therapy instead of radiation therapy?










































    do you know of any side effects? Also is the equipment up to date?
    would appreciate you and the other posters giving me any information.

    PBT is just another form of radiation
    Roth:

    Proton Beam Therapy (PBT)is just a different form of radiation and the side effects from PBT treatment are similar to other forms of radiation used to treat prostate cancer, such as brachytherapy (BT), IMRT and EBRT and CyberKnife (CK).

    The short term side effects of radiation treatment most commonly include fatigue, urinary urgency or incontinence, ED, bowel movement irregularities and rectal bleeding. The long term effects are unclear, but people suggest that collateral cancers -- such as bladder cancer -- may be associated with prostate cancer radiation treatment.

    One short-term side effect that I've seen reported specific to PBT is some focused skin irritation (or burning) along the thigh at the point of delivery because the proton beam is focused at only one point of entry and does not move during treatment. I don't think that this is a significant problem w/PBT, but it is something unique to PBT.

    I assume there have been some fine tuning and upgrading, but I don't know if there have been any major advances in PBT technology since it was first used about 10 years ago. However, here have been other technological advances in radiation treatment of prostate cancer that I believe have improved upon PBT, specifically CK, which you should explore if you are looking into PBT as a method of treatment.

    There are other threads on CK already posted on this forum that you can do a simple search for and you can get further info from the Patient's Forum on CK's manufacturer's site at: http://cyberknife.com/Forum.aspx?g=topics&f=2586.
  • Feb2010
    Feb2010 Member Posts: 51
    Feb2010 said:

    Hello SwingShift
    The balloons were not too bad. How are you doing,PSA checks and all?
    I'll post updates as I go along.
    Take care

    A YEAR AFTER PROTON
    Time flew by, and it has been over a year since my treatment ended at Loma Linda. I have had two blood tests since.
    My post treatment PSA was 4.91. My first blood test indicated it at 2.21, that was last December 2010. Second test was at 2.55, it went up by about .30. My next test is in January, hopefully the upward trend will reverse itself.
    Observed side effects, greatly diminished ejaculate, peeing seems unnaturally "low pressure" in the morning but becomes normal after that. Zero bleeding, no ED, no pain.
    I'm currently working and leaving overseas. I'll post more later. I just want to say hello to everyone out there.
    Please feel free to ask me questions about my proton experience. Thanks folks. Oh, and Happy Halloween!!
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Feb2010 said:

    A YEAR AFTER PROTON
    Time flew by, and it has been over a year since my treatment ended at Loma Linda. I have had two blood tests since.
    My post treatment PSA was 4.91. My first blood test indicated it at 2.21, that was last December 2010. Second test was at 2.55, it went up by about .30. My next test is in January, hopefully the upward trend will reverse itself.
    Observed side effects, greatly diminished ejaculate, peeing seems unnaturally "low pressure" in the morning but becomes normal after that. Zero bleeding, no ED, no pain.
    I'm currently working and leaving overseas. I'll post more later. I just want to say hello to everyone out there.
    Please feel free to ask me questions about my proton experience. Thanks folks. Oh, and Happy Halloween!!

    Similar Results w/CK
    Just wanted to say that my 1 yr results w/CyberKnife (CK) are similar to yours.

    My pre-treatment PSA was around 4.5 but has only dropped to around 3 since treatment w/CK. The side effects you've observed for yourself are also similar for me.

    And, like you, I also hope that the PSA level will drop further. Many men report post radiation treatment PSA levels below 1 w/in 3-6 months following treatment and research suggests that a reassessment of the status of the cancer (via biopsy, MRI, CAT, bone scan, etc) is advisable, if our PSA test results do not drop to that level 2 years after treatment (which is just 1 more year for us).

    Good luck!
  • MBOY
    MBOY Member Posts: 1
    Feb2010 said:

    A YEAR AFTER PROTON
    Time flew by, and it has been over a year since my treatment ended at Loma Linda. I have had two blood tests since.
    My post treatment PSA was 4.91. My first blood test indicated it at 2.21, that was last December 2010. Second test was at 2.55, it went up by about .30. My next test is in January, hopefully the upward trend will reverse itself.
    Observed side effects, greatly diminished ejaculate, peeing seems unnaturally "low pressure" in the morning but becomes normal after that. Zero bleeding, no ED, no pain.
    I'm currently working and leaving overseas. I'll post more later. I just want to say hello to everyone out there.
    Please feel free to ask me questions about my proton experience. Thanks folks. Oh, and Happy Halloween!!

    A year after proton

    Hi. 

    I realuze it’s been over 6 years since nc your proton treatment at Loma Linda. I’m close to embarking on that path and very ntetestd about your after eff st now six years later. 

    i appreciate your reply.

     

    mboy

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    edited April 2018 #56
    stale thread....Feb 2010 last posted in 2012

    Probabl best for you to start a new thread

    click discussion board above, then click "add new forum topic" upper left corner under discussion boards