10 Year Anniversary

Trew
Trew Member Posts: 932 Member
in Prostate Cancer #1

10 years ago I was half way through radiation at Loma Linda University Medical Center.  

 

Gleason was a 5+4.  Positive margins into the bladder neck area.  

 

It was mentioned I had a 50/50 chance of recurance.  I am still here!!

 

AUS 800 and all.

 

Life is Good!

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #2
    Congrats!

    Hi Trew,

    Congrats on your 10 year anniversary, hope for many more in your future.

    Dave 3+4

  • greenteaguy
    greenteaguy Member Posts: 37
    #3
    Success Story

    It is always good to hear success stories.  Keep up the good work!

  • Trew
    Trew Member Posts: 932 Member
    #4
    Success stories were an

    Success stories were an encouragement to me, too.  One can get through the trama of the moment, arrive at "safe ground" and then forget about the support that helped in crisis.

     

    In the early days of treatment I did find a lot of support and encouragement here.  I would have forgotten about this anniversay but I was reading in my Bible last week and found note with date: "2nd week of radiation."  That was 10 yrs ago.  And that reminded me of this site.  At that time there were a group of us that all started posting about the same time, some that had been posting.  

     

    I remember one poster in particular.  When he was dx his gleason was rather high.  He decided to do nothing and see if healthy living to take care of the problem.  His condtion turned for the worse and I am sure he is long gone now.  Prostate cancer does kill a lot people.  WE survivors have been through something, or came very close to something very serious.  My PSA never was very high- like 12 or something, but my cancer went from a 4+4 to a 5+ 4 in like 6 weeks.  Looking back, it was aggressive and moving out to other parts.  

     

    And here I am, 10 years later!!  celebrate!!!

  • nogvnup
    nogvnup Member Posts: 3
    edited December 2019 #5
    Stay Strong. Sounds like you

    Stay Strong. Sounds like you got a grip on this. HOLD ON... My OnX tells me that after 2 se3ssions of my second round Sorry, time to change to higher octane. Had the first round down so well could go back to work after 4 days. ( ugly,.. but there.)  Blessed with 2 yrs of  .... Psa 500    .... TEx ...  0   Blessed so hard, I got cocky. Radio  shots ... Every needle every where... But I knew the **** would be back. Starting a new Taxatere next week. I know this may be minor compared, but it's got me really <Content removed by CSN Support Team>. Ya get a minite , rreally could use some false promises. In the mean time. Gentlemen, .. Stay Atrong ...

     

     

     

     

  • nogvnup
    nogvnup Member Posts: 3
    #6
    50/50

    Kudos ! That's the kind of story I like waving in my Onx doctors face. Fight on and stay strong .. M

  • nogvnup
    nogvnup Member Posts: 3
    edited December 2019 #7
    Cancer 2 Perfect Plan 0

    First Chemo was back in 2017. Urologist said PSA  556,  WHOA..  No ****. His actual words. Not comforting when your 58. testostorne  feeding the tumors so they say..so they got to go.   R.I.P.  BBoys  You got us into this ****, and you don't have much punch left.  ssssoooooo  bye bye. Taxatere 1 round Trying to play it so cool I pullrd my IV out. Twice. me and the wife playing cards. Bleesedwith no CIN Because a wonderful Dr. at west Clinic says " Moderate drinking reduces Chemo NX  AND the use of cannabanoids works well too.  So it's back to the diet of whiskey and weed. Thoughts..  ?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #8
    Trew said:

    Success stories were an

    Success stories were an encouragement to me, too.  One can get through the trama of the moment, arrive at "safe ground" and then forget about the support that helped in crisis.

     

    In the early days of treatment I did find a lot of support and encouragement here.  I would have forgotten about this anniversay but I was reading in my Bible last week and found note with date: "2nd week of radiation."  That was 10 yrs ago.  And that reminded me of this site.  At that time there were a group of us that all started posting about the same time, some that had been posting.  

     

    I remember one poster in particular.  When he was dx his gleason was rather high.  He decided to do nothing and see if healthy living to take care of the problem.  His condtion turned for the worse and I am sure he is long gone now.  Prostate cancer does kill a lot people.  WE survivors have been through something, or came very close to something very serious.  My PSA never was very high- like 12 or something, but my cancer went from a 4+4 to a 5+ 4 in like 6 weeks.  Looking back, it was aggressive and moving out to other parts.  

     

    And here I am, 10 years later!!  celebrate!!!

    Five Stars

    Fantastic outcome, Trew.  I am interested as to what form of radiation you received.  My guess is that it was IMRT, which is still today the most common.  Ten years out, it is extremely unlikely that you'll ever see PCa again.  Not impossible, but very unlikely.

    max

  • Trew
    Trew Member Posts: 932 Member
    #9
    Max Former Hodgkins Stage 3 said:

    Five Stars

    Fantastic outcome, Trew.  I am interested as to what form of radiation you received.  My guess is that it was IMRT, which is still today the most common.  Ten years out, it is extremely unlikely that you'll ever see PCa again.  Not impossible, but very unlikely.

    max

    I had 10 proton treatments,

    I had 10 proton treatments, and then 34 regular radiation. 

    I had my first colonoscopy this summer.  The doctor had a terrible time getting the scope up the tubes.  She told she had to turn me into a few different positions.  Lots of scar tissue.  I'm not surprised about that.  Radiation is hard on the body.  

  • Josephg
    Josephg Member Posts: 455 Member
    #10
    Trew said:

    I had 10 proton treatments,

    I had 10 proton treatments, and then 34 regular radiation. 

    I had my first colonoscopy this summer.  The doctor had a terrible time getting the scope up the tubes.  She told she had to turn me into a few different positions.  Lots of scar tissue.  I'm not surprised about that.  Radiation is hard on the body.  

    Colonoscopy

    I had my first post-radiation colonoscopy this past Spring, and I was not advised of any difficulty in navigating the tube and camera through my colon.  I quess that I was lucky in this one instance.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #11
    Congratulations

    Trew,

    I am very pleased for reading your posts again. Shall I say that I was missing them.

    Congratulations for the Tenth anniversary. Your story was always intriguing to me for the RT combination of protons and photons, apart from the setting of an AMS used by a biker. Does it work?

    Best wishes for continuing success.

    VG 

  • Trew
    Trew Member Posts: 932 Member
    #12
    VascodaGama said:

    Congratulations

    Trew,

    I am very pleased for reading your posts again. Shall I say that I was missing them.

    Congratulations for the Tenth anniversary. Your story was always intriguing to me for the RT combination of protons and photons, apart from the setting of an AMS used by a biker. Does it work?

    Best wishes for continuing success.

    VG 

    Vascoda, You have been around

    Vascoda, You have been around on this board for a long time.  You are one of the names  I remember when I was into the crisis part of treatment.  What a time that was!  

    I have not yet found a bike seat that is compatible with my AUS.  The way bike seats are designed they put enough pressure on the AUS cuff to allow leakage.  Very discouraging. I'd like to ride a lot more than I do just because of leakage probelm.  I still backpack but sitting on hard ground can cause the same problem so I have to wear a pad every day, all the time when out backpacking. 

     

    I take it has just part of life after PC.  

     

     

  • seasontickets
    seasontickets Member Posts: 6
    edited December 2019 #13
    Trew said:

    Vascoda, You have been around

    Vascoda, You have been around on this board for a long time.  You are one of the names  I remember when I was into the crisis part of treatment.  What a time that was!  

    I have not yet found a bike seat that is compatible with my AUS.  The way bike seats are designed they put enough pressure on the AUS cuff to allow leakage.  Very discouraging. I'd like to ride a lot more than I do just because of leakage probelm.  I still backpack but sitting on hard ground can cause the same problem so I have to wear a pad every day, all the time when out backpacking. 

     

    I take it has just part of life after PC.  

     

     

    Bicycle seat

    Saw your post about bicycle.Amazaon has a couple without the horn.And one the same one on amazon is sold in Walmart,$19.00.I have that one,and another which consist of two butt cheek pads.I needed scooting up alot,to get it right,but it's doable.

  • Trew
    Trew Member Posts: 932 Member
    #14
    VascodaGama said:

    Congratulations

    Trew,

    I am very pleased for reading your posts again. Shall I say that I was missing them.

    Congratulations for the Tenth anniversary. Your story was always intriguing to me for the RT combination of protons and photons, apart from the setting of an AMS used by a biker. Does it work?

    Best wishes for continuing success.

    VG 

    For me, the AMS 800 and

    For me, the AMS 800 and biking were never a good mix.  I play a lot of pickleball now.  Less leaking with that activity.  Biking just puts too much sress on the bladder neck area which causes the leaking.  I am on my 3rd bike seat.  I need a big "fatman" type seat with lots of area I would guess and I haven't been able to find one yet.

    I am alive, so I take what life has for me.  

  • RonOnThePond
    RonOnThePond Member Posts: 3
    edited February 2020 #15
    Trew, I'll be joining you soon ...

    10 years is a big milestone, so big congratulations! March will be my 9-year anniversary post-treatment, but at the other extreme of the country - University of Florida Health Proton Therapy Institute in Jacksonville. They, along with the fabled Loma Linda, are among the early pioneers. I hope any newbies will keep both on their list to consider, depending on which ocean you prefer.

    Be well, and be happy!

    Ron

  • ob66
    ob66 Member Posts: 227 Member
    #16
    Nice to see you are doing well Trew

    I remember you very well and your concerns. We talked a lot about the AUS800 back then and it is so good to hear you are doing so well. I had Sx, RT, and AUS in 2009-2010. All remained well until about 3 years ago when my PSA started a slow rise. Last year it went over 0.2  and then this months reading popped to 1.4. So I may be going back on Lupron in the future as it worked so well back then. My increased readings caused me to check in on the board, and seeing some of the familiar names is so good. Vasco, you, and what about Kongo??

    Anyway congrats to you on 10 years and continued activity. So much better than 10 years ago.

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #17
    Bicycle seats

    Hey Trew,

    A fews years ago a company was making bike seats with two but cheek pads and nothing in the middle.  Don't have anymore info but they might still be out there if you look into it.

    Dave 3+4

      

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited February 2020 #18
    ob66 Welcome back

    ob66,

    I am sorry to hear about the reason for your return to the board. I hope you manage to punch down the bandit again. Kongo stop attending the forum in 2014 but he can be reached via his blog on Kongo's travel and adventures, though he may not discuss on PCa.

    I wonder about your plans. The way we see PCa and therapies have changed. Please let us know if you want to know about our experiences.

    Best,

    VG  

  • ob66
    ob66 Member Posts: 227 Member
    edited March 2020 #19
    VascodaGama said:

    ob66 Welcome back

    ob66,

    I am sorry to hear about the reason for your return to the board. I hope you manage to punch down the bandit again. Kongo stop attending the forum in 2014 but he can be reached via his blog on Kongo's travel and adventures, though he may not discuss on PCa.

    I wonder about your plans. The way we see PCa and therapies have changed. Please let us know if you want to know about our experiences.

    Best,

    VG  

    Thanks Vasco

    As always, I am always open to the experiences of others. My ride has been so good. The boogeyman of Ca is compartmentatlized off in my mind and I positively go about my life. I would share that for 7 years following surgery and radiation plus hormone therapy I not only maintained a positive attitude, but went on a Vegan lite diet (no dairy, no red meat, some chicken and fish) and additionally used massive does of Vitamin D. Now with the coronavirus I am reading again how Vit D assists one's immune systems. 

    After 7 years of Vegan type eating I went back to a regular diet (was 75 at the time) with a "What the hell" attitude and I reallly revisited my love for cheeses, moreso than the red meats.

    Right now my Urologist and Oncologist are keeping the lupron as a back up and have told me it will come in to play in my future. I remember the first go around it kept me below 0.02 so is effective in my body. I called it my lupron vacation even though, like the ladies, I had the all day sweats. Anything to beat the big C.

    I would add that like Trew, riding a bicycle would not work well with the AUS. Mine works just fine and I use 1, sometimes 2 pads/day, but sitting on a hard chair or coughing hard will give an unwanted "squirt". A bicycle seat, no matter the shape,  would not be compatible. I am glad Trew found other ways to exercise. I do recall his love of hiking.

    So any comments any of you have would be very much appreciated. Hope all finds you well Vasco.

  • DztBlk
    DztBlk Member Posts: 5
    edited March 2020 #20
    Congratulations!

    That's good news.  It's very good news for me. I had the same gleason score.  It's been not quite 2 years for me.  Loma Linda is a good facility.  I wish you continued good health.

  • Ralphie62
    Ralphie62 Member Posts: 61 Member
    edited May 2020 #21
    RonOnThePond said:

    Trew, I'll be joining you soon ...

    10 years is a big milestone, so big congratulations! March will be my 9-year anniversary post-treatment, but at the other extreme of the country - University of Florida Health Proton Therapy Institute in Jacksonville. They, along with the fabled Loma Linda, are among the early pioneers. I hope any newbies will keep both on their list to consider, depending on which ocean you prefer.

    Be well, and be happy!

    Ron

    shands

    Hi there!! i was there in 2010!! PSA last check 0.4 and no side effects>> congratulations on your anniversary!!!

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