What lies ahead?

13

Comments

  • CC52
    CC52 Member Posts: 103 Member
    3 Month CK Follow-up

    Very good news following my visit with my RO last week. PSA dropped significantly once again, this time to 1.3 ng/ml. Testosterone also remains at a normal level (503 ng/dL) for a man my age.

               History:         Start of CyberKnife treatment -  (9/9/14) 7.5 ng/ml

                                                      1 month follow-up   (10/22)  3.7 ng/ml

                                                      3 month  follow-up  (12/17)  1.3 ng/ml  

    I know I've got a long way to go and there may be some "bumps" ahead, but needless to say I am thrilled at these early results. Next appointment in March.

    Best wishes everyone -

    CC

                                                

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    3 Month CK Follow-up

    Very good news following my visit with my RO last week. PSA dropped significantly once again, this time to 1.3 ng/ml. Testosterone also remains at a normal level (503 ng/dL) for a man my age.

               History:         Start of CyberKnife treatment -  (9/9/14) 7.5 ng/ml

                                                      1 month follow-up   (10/22)  3.7 ng/ml

                                                      3 month  follow-up  (12/17)  1.3 ng/ml  

    I know I've got a long way to go and there may be some "bumps" ahead, but needless to say I am thrilled at these early results. Next appointment in March.

    Best wishes everyone -

    CC

                                                

     

    celebration

    red wine time

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    CC52 said:

    3 Month CK Follow-up

    Very good news following my visit with my RO last week. PSA dropped significantly once again, this time to 1.3 ng/ml. Testosterone also remains at a normal level (503 ng/dL) for a man my age.

               History:         Start of CyberKnife treatment -  (9/9/14) 7.5 ng/ml

                                                      1 month follow-up   (10/22)  3.7 ng/ml

                                                      3 month  follow-up  (12/17)  1.3 ng/ml  

    I know I've got a long way to go and there may be some "bumps" ahead, but needless to say I am thrilled at these early results. Next appointment in March.

    Best wishes everyone -

    CC

                                                

     

    Excellent results! 

    Excellent results!  Much like Kongo (who we don't hear from anymore) and much better than mine.  Took me 2 years to get the PSA result you got in only 3 months.  Congrats!!!!

  • Old-timer
    Old-timer Member Posts: 196
    Tough Decision

    Based on the information you give, I think the decision you are facing is not an easy one. My guess is that you have time to study and give it careful thought. It appears that you are doing that.

    I plan to watch what others have to say to you, and other information you provide, and then come back and talk some more. At the moment, I am rushing to get a few holiday related matters taken care of.

    Good luck.

    Old-timer (Jerry)

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,769 Member

    Excellent results! 

    Excellent results!  Much like Kongo (who we don't hear from anymore) and much better than mine.  Took me 2 years to get the PSA result you got in only 3 months.  Congrats!!!!

    Yes

    I studied IGRT for a long time, before deciding on RP.  A Nadir number that low that fast is, from what I have read, is a very good sign.  Dr Scardino (head of surgery at Sloan Kettering) writes in his Prostate Book that the faster a PSA falls after RT, the better.

    I wish Kongo would chime back it. He was so thoughtful and well-informed.

    max

    (surgical removal scheduled for 1-28-15; still having considerable pain, for some reason)

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    There may be some "bumps" ahead

    CC

    I am happy for you being happy. It is still early to comment about war successes but so far the decreases in PSA are very welcomed. I hope it continues on its path to “Victory”. Your story is full of “adventures” and you have overcome all of them. Thanks for sharing your details.

    Let’s celebrate and that the New Year brings you and your family good fortune.

    VG

    Note: Though we cannot force one’s will, many are missing Kongo’s posts and opinions. You may try sending him a CSN mail or, if you think it appropriate, leave a note requesting contact at his blog at “Travel Monkey – the adventures o Kongo”.

  • CC52
    CC52 Member Posts: 103 Member
    6 Month Check-up

    Had my six month follow-up post CK with my Dr. on 3/18, and while I don't have the testosterone result yet, the most important number is the psa. It went down again, so let's pour the wine!

    History:             

    Start Of CyberKnife Treatment (9/19/2014) 7.5 ng/ml

    1 month follow-up (10/22/2014) 3.7 ng/ml

    3 month follow-up (12/17/2014) 1.3 ng/ml    

    6 month follow-up (3/18/2015) 1.1 ng/ml

    Warmest regards! - CC

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    6 Month Check-up

    Had my six month follow-up post CK with my Dr. on 3/18, and while I don't have the testosterone result yet, the most important number is the psa. It went down again, so let's pour the wine!

    History:             

    Start Of CyberKnife Treatment (9/19/2014) 7.5 ng/ml

    1 month follow-up (10/22/2014) 3.7 ng/ml

    3 month follow-up (12/17/2014) 1.3 ng/ml    

    6 month follow-up (3/18/2015) 1.1 ng/ml

    Warmest regards! - CC

    Very good, almost one.

    A toast for you.

    Best

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    CC52 said:

    6 Month Check-up

    Had my six month follow-up post CK with my Dr. on 3/18, and while I don't have the testosterone result yet, the most important number is the psa. It went down again, so let's pour the wine!

    History:             

    Start Of CyberKnife Treatment (9/19/2014) 7.5 ng/ml

    1 month follow-up (10/22/2014) 3.7 ng/ml

    3 month follow-up (12/17/2014) 1.3 ng/ml    

    6 month follow-up (3/18/2015) 1.1 ng/ml

    Warmest regards! - CC

    Excellent Results!!!

    Congrats!!!  Much better than my post-CK results.   Here's hoping that the trend continues in this direction.

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    Excellent Results!!!

    Congrats!!!  Much better than my post-CK results.   Here's hoping that the trend continues in this direction.

    Successes

    I wonder about the other fronts. The PSA is consistent and targets the ultimate success; CURE.
    What about symptoms, apparent side effects or matter of the sex department? Do they make part of this success?

    Let us know more details.

    Congratulations

    VG

  • CC52
    CC52 Member Posts: 103 Member

    Successes

    I wonder about the other fronts. The PSA is consistent and targets the ultimate success; CURE.
    What about symptoms, apparent side effects or matter of the sex department? Do they make part of this success?

    Let us know more details.

    Congratulations

    VG

    Ah, good one!

    That's a great question VG!!

    At six months post CK, and after the tough time dealing with the shingles during my treatment, I am happy to report all is good. Mostly.

    When I began my treatments and up to Nov 30, I was on two Flomax (tamsulosin hcl 0.4mg) per day. For the next 30 days, I reduced to one per day. On Jan 1, I went off it completely.

    I tell you all that to say my experience was:

    Urinary issues (difficulty peeing, discomfort, etc) were greater during and immediately after the treatments, and have lessened as time has gone on. Peeing has returned to normal as I remember it.

    Sexual issues related to the Flomax use were "unpleasant", due to retrograde ejaculation. I described that in an earlier comment in this thread. Ejaculating was also difficult at times - but hard to know if that was a result of the treatment or of my own overthinking it - i.e. would I **** or will it hurt or what if I can't? The sensation of cumming then was noticeably different, and it was painful at times. Never had much of a problem getting an erection either, but maintaining it didn't always happen. Over time, sexual function has improved, and I'd say to about where it used to be.

    The one area that has not returned to normal yet is my bowel movements. Prior, I was a regular morning guy, once per day with a normal stool. Since my treatments ended, I usually go in the morning, but there are times that I have 2 or 3 bm's a day. And when it comes -get out of my way! A few times a almost didn't make it to the john. Also, instead of the normal stool I used to have now they are much softer/loose. Dr says that is a result of the treatment and dietary fiber, and may improve with more time.  

    (wasn't that fun to read fella's?)

    I'm very pleased with my results so far, and accordingly, I'm thrilled with the decision I made to do CyberKnife. I understand that there are no guarantees - and the future is full of uncertainty, but I am living my life anticipating that I will evade the bandit from here until my last breath.

    Peace,

    CC

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    Peace

    CC

    Great post. Thanks for sharing the details.

    The bowel problem will also improve in time. I also had soft stool for quite a long period that improved after imposing some restrictions on diet. A colonoscopy revealed diverticulosis that were accumulating “grains” and expelling them later with traces of blood. My doctor commented that it could be a cause from RT. (could it?)
    In fact RT has caused me to lose partially the sensation when passing stool but I have never been incontinent and lately (10 years post RT) I begun seeing some improvement in that too.

    Best wishes for total recovery.

    VG

  • CC52
    CC52 Member Posts: 103 Member
    Nine month check up

     

    Met with my RO Wednesday for my nine month check, and it's all good news. When he said "I'm not worried about you at all", I pointed to my head to which he replied he can't help me with that, we all had a good chuckle Wink.

    He told me things seem to be progressing normally, and needless to say I'm very happy with the results. Lingering side effects with urination and bowel stuff, but nothing that is a huge problem for me. Sexually - no problems.

    History:             

    Start Of CyberKnife Treatment (9/19/2014) psa 7.5 ng/ml

    1 month - (10/22/2014) psa 3.7 ng/ml, testosterone 471 ng/dL

    3 month - (12/17/2014) psa 1.3 ng/ml, t 503 ng/dL

    6 month - (3/18/2015) psa 1.1 ng/ml, t 380 ng/dL

    9 month - (6/24/2015) psa 0.5 ng/ml, t 469 ng/dL

    Will check back in September, until then, I raise my glass in celebration my friends!

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    Nine month check up

     

    Met with my RO Wednesday for my nine month check, and it's all good news. When he said "I'm not worried about you at all", I pointed to my head to which he replied he can't help me with that, we all had a good chuckle Wink.

    He told me things seem to be progressing normally, and needless to say I'm very happy with the results. Lingering side effects with urination and bowel stuff, but nothing that is a huge problem for me. Sexually - no problems.

    History:             

    Start Of CyberKnife Treatment (9/19/2014) psa 7.5 ng/ml

    1 month - (10/22/2014) psa 3.7 ng/ml, testosterone 471 ng/dL

    3 month - (12/17/2014) psa 1.3 ng/ml, t 503 ng/dL

    6 month - (3/18/2015) psa 1.1 ng/ml, t 380 ng/dL

    9 month - (6/24/2015) psa 0.5 ng/ml, t 469 ng/dL

    Will check back in September, until then, I raise my glass in celebration my friends!

     

    Way under one

    Celebration time...not only the best toasts , but next week we will arrange to have fireworks in your honor.

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    What lies ahead !

    Yes let's celebrate with fireworks,... what an idea.

    Congratulations.

    The purposes (title) of this thread got now a clear answer and the best ending. 

    Best wishes

    VG

  • CC52
    CC52 Member Posts: 103 Member
    CC52 said:

    Nine month check up

     

    Met with my RO Wednesday for my nine month check, and it's all good news. When he said "I'm not worried about you at all", I pointed to my head to which he replied he can't help me with that, we all had a good chuckle Wink.

    He told me things seem to be progressing normally, and needless to say I'm very happy with the results. Lingering side effects with urination and bowel stuff, but nothing that is a huge problem for me. Sexually - no problems.

    History:             

    Start Of CyberKnife Treatment (9/19/2014) psa 7.5 ng/ml

    1 month - (10/22/2014) psa 3.7 ng/ml, testosterone 471 ng/dL

    3 month - (12/17/2014) psa 1.3 ng/ml, t 503 ng/dL

    6 month - (3/18/2015) psa 1.1 ng/ml, t 380 ng/dL

    9 month - (6/24/2015) psa 0.5 ng/ml, t 469 ng/dL

    Will check back in September, until then, I raise my glass in celebration my friends!

     

    One Year

    (Posted in the Cyberknife Treatment thread):

    My one year check-up on 9/25 went well... at least as far as the numbers go:

    PSA came back at .4 ng/mL (.421 ultra sensative), and testosterone was 449 ng/dL . Definitely pleased about that.

    Still having some issues with urination though. During the day, starting and flow is good, but with more frequency than usual. Sometimes, an hour or two between visits to the bathroom. Don't feel like I'm completely emptying every time.

    Consultation with my RO is this can happen at about the one year mark, and I mentioned to the Dr. that I had already put myself back on Flomax. He agreed with that, and offered a steroid if I felt it necessary. I declined. I've upped my doseage now to two pills per day, so I'll see if that helps. I've also had some serious pain around the tip (shooting needle like symptoms) at times - mostly as I settle into bed at night. That really gets my attention!

    I trust my RO's advice on what I'm experiencing - that it's not at all unusual, and that with more time (2-3 months) things should begin to settle out with a return to more normal habits.

    CC

  • Michael1951
    Michael1951 Member Posts: 1

    Choices

    CC52:

    Hi.  My biopsy showed 5% of 1 in 10 samples as positive and my Gleason was 3+3=6.  I spent 6 months researching my options.  To make a long story short, I chose the DaVinci surgery option (and had my surgery on Oct. 9 of this year).  (I just didn't want to live knowing there was a cancer inside me and wondering if or when it would spread.)  After seeing the pathology report, which showed the cancer less than 1mm from the margin, the urologist told me he had thought for sure that I had been a candidate for AS but with the tumor being so close to the margin I really wasn't.  (I am not now very comfortable with such a close call and wonder if it has possibly spread beyond the margins; only time will tell).  I have my first post-op PSA test coming up in a couple of weeks.  In any event, there is really no way of knowing with certainty whether AS, radiation, or surgery is the right option.  It is really up to you to determine what is best for you.  It pretty much boils down to what side effects you can live with.  The side effect of AS is having to live with the uncertainty.  The side effects of radiation and surgery are well known -- I am living with incontinence and erectile dysfunction right now (hopefully both are only temporary, but it will be months before I know about the first and probably a couple of years before I know about the second).  I wish you the best in the decisionmaking process you will be undergoing and for the best results possible!

    Michael

    Your health

    Hello Michael. 

    I am a new member just reading posts on the discussion boards.  I had the DaVinci Surgery in December 2012.  Just curious, how is your incontinence and ED at this point?  Personally, I feel great in all ways except for those same two things. 

    Michael

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member

    Your health

    Hello Michael. 

    I am a new member just reading posts on the discussion boards.  I had the DaVinci Surgery in December 2012.  Just curious, how is your incontinence and ED at this point?  Personally, I feel great in all ways except for those same two things. 

    Michael

    Stale Thread

    Michael1951:  Welcome to the forum BUT, if you are asking this question of MichaelF1002, please note that he has NOT been back on this forum since Feb 2014 and, since it is now Feb 2016, it is unlikely that he will answer. 

    If you have any specific questions along these lines relative to your own recovery that you'd like CURRENT members of the forum to answer, please post thm to a NEW THREAD (rather than tack a comment buried in an old thread such as this).

     

  • CC52
    CC52 Member Posts: 103 Member
    Overdue post Cyberknife update

    Greetings fellow forum mates! I've not been good about staying active here for a few months now, so I have some catching up to do.

    For the most part, things have been okay. As I've described here in various posts, or on the Cyberknife thread (http://csn.cancer.org/node/292915), I have experienced some difficulties, mostly related with urination since completing my treatment. I'm on Flomax, back and forth a couple times between one and two per day (Dr's advice) as my symptoms change. Mostly, I continue to have the most difficulty urinating at night. I try to watch my liquid intake, but as I've told my Dr., not much seems to make a difference. Peeing once or twice per night, but it's the flow - or lack of it - that is most troubling. No issues during the day. Anyone have any thoughts?

    Stools remain soft, and urgency can be a problem from time to time, but so far no accidents!

    Sexual function has also been a bit inconsistant. But hey, I'm not 23 so I'm working to accept changing dynamics related to age and radiation treatment.

    Number recap goes like this:

    Start Of CyberKnife Treatment (9/19/2014) psa 7.5 ng/ml

    1 month - (10/22/2014) psa 3.7 ng/ml, testosterone 471 ng/dL

    3 month - (12/17/2014) psa 1.3 ng/ml, t 503 ng/dL

    6 month - (3/18/2015) psa 1.1 ng/ml, t 380 ng/dL

    9 month - (6/24/2015) psa 0.5 ng/ml, t 469 ng/dL

    12 month - (9/24/2015) psa 0.4 ng/ml (.421 ultra sensitive), testosterone 449 ng/dL

    And the really GOOD news is, in spite of my urinary/bowel/sexual inconsistencies, my most recent numbers are:

    18 month - (3-18-2016) psa 0.1 ng/ml (.139 ultra sensitive), testosterone 264 ng/dL

    In all, I'm feeling really good for a slightly overweight, out of shape soon to be 64 year old. I'm happy with my decision to do the Cyberknife treatments in spite of the related (to my experience) side effects. My results so far are all I need to have as confirmation that the treatments were successful. My next appointment is in September, and I'll do my best to provide an update.

    All my best to everyone - CC

     

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Congratulations!

    While you seem to think you need further confirmation, I'd say that your treatment w/CK has been successful in terms of killing the cancer.  Generally, after radiation, the goal is to achieve a PSA less than 1 and you have far exceed that at 0.01 after 18 months.

    FWIW, I am now over 5 years past my CK treatment and still haven't gotten a PSA result that low yet.  My last/lowest reading was 0.200.   So, it's been a much longer road for me to receive confirmation of a "cure."

    Sorry to hear about your difficulties w/urination and "less than satisfactory" sex BUT those things may not be due to CK.  Not saying that CK may not have anything to do w/those problems but your age may be the main factor.

    I'm 65 and am also still taking urinary frequency drugs (Flomax and Oxybutynin) and have been taking Cialis (mainly as a sexual aid but it also is supposed to help w/urinary frequency) because (like you) also still have those issues BUT I do not attribute them to my CK treatment.  I think that they are mainly a function of age.

    In any event, congratulations on your apparently successful CK treatment!  Please keep us up to date as time passes.