Do False-Stable results exist? My latest tests

24

Comments

  • Old Salt
    Old Salt Member Posts: 1,007 Member

    Increased PSA but lower Testosterone

    (My RP experience)

    This week it makes 15 years since my first attempt to free me from the bandit. My open prostatectomy was done in August 15 of 2000, 3 months after being diagnosed with PCa. I recall well that occasion. On the previous evening the surgeon, Dr. Komatsu, introduced to me and my wife his operating team composed of 5 specialists. He explained the details of the whole procedure, its risks, etc, and requested us to sign an agreement (sort of consent relieving them and the facilities from unpleasant outcomes), recognizing our total understanding of the operation. Later some guy came to my room to shave me from knees up except the head. On the “D-Day” with an empty stomach at noon time one nurse and the doctor in charge of the pre-operative preparations gave me a pill for relaxation, dressed me into a light white gown and then took me on a stretcher to the corridor, to an elevator and down to the surgery theatre. My wife accompanied me all the way and we said good bye when pushed into the hall. There two doctors dressed in green gowns asked me if I knew them. They were the anaesthetists. They informed of their job and asked me to show my back. I was already sort of drudged with the relaxation pill. Then I felt a sort of cold liquid flowing into my spine (epidural anaesthesia, and fall asleep right away. Much later, I recall being awaken at one time (during the operation, I guess) by the doctor calling my name to which I answer (I saw three or four silhouettes over me) He asked me if I was feeling all right and I said that I felt urinating. Then I heard him saying “give him more anaesthesia” and I fallen asleep again and only awaken at around 22H00 at the recovery room, and saw my wife in front smiling at me. She had been the whole time of the operation in a wanting lounge where she was kept informed on the progression of the surgery. She told me that Dr. Komatsu at one time shown her my prostate gland (on the way to the pathologist lab of the hospital) explaining that it looked normal in aspect shape and size. He told me later that the operation took 5 hours and that he had carefully suck/vacuum all liquid and pieces of soft tissue surrounding the organs before stitching me up.

    I stayed in the hospital 17 days (5 in preparation for the operation and 12 for recuperating until the catheter was taken out). The hospital facilities (in Tokyo) and staff were excellent. Well looked after, clean and efficient. Two days after operation I was standing and walking in the hospital’s corridor (a squared ring of 350 meters long) pushing a tripod with attached medicine tubes and catheter sac. I never experienced pain and felt good for the physical movements. Five days later I could go out and enjoy the outer fresh air at the hospital‘s gardens.

     

    In this anniversary I got the periodical PSA result. It increased to the levels of March 2015 at 1.48 ng/ml. It is higher than the previous but still low and I am not sure if the level is acceptable to the 68ga PSMA PET/MRI trial. I hope Coimbra hospital allows me to wait for another increase.
    What surprised me this time is the level of the testosterone. It has been decreasing since September 2014 from T=356 to T=209 ng/dL (Aug 2015). This is considered lower than normal in a 65 years old man. I would appreciate if some comrade here could give some “light” on the incidence. What can be causing the decrease? Should I try TRT?
    I recall a survivor in this forum (Jogger; http://csn.cancer.org/node/234869#comment-1207973) commenting about his experience with decreasing levels of Testosterone, but do not know exactly how he managed to control his status at the end.

    What can an ADT patient do when his body lowers the testosterone naturally to such levels under the 280 threshold (normal = >280 ng/dL)?

    Best wishes to all.

    VGama

     

    Lower T

    I agree with Swingshiftworker that this appears to be a non-issue. Just keep exercising and if I were you, I would stay miles away from testosterone replacement therapies, considering that you may have micrometastases.

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    Extra Estradiol

    Thanks for the opinions.

    For the moment I will keep things as they are. Lower testosterone is not affecting my daily routines. T=200 is also not that low but it has been decreasing along the past one year whose cause I would like to know what it really is.
    I do not want to mess up with the normal flow of the PSA (produced by the cancer) but if T comes down to very low levels similarly to Jogger in my link above, I will have to do something. At the present, I am not experiencing depression or fatigue so that I rule these out. I will check any added bone loss because I was diagnosed with osteopenia just before starting HT. In my last DEXA scan of 2012 osteopenia did not vary and kept at -1.2 (osteoporosis starts at -2.5). Thanks for the suggestions ,Swing and Salt.

    In any case this year I have “enjoyed” some moments of stress and in my last health checkups of April some blood markers were out of the normal range (Microalbuminuria at 6.13 mg/dL; Glomerular filtration rate (GFR) at 49.9 mL/min/1.73 and the Creatinine in the blood at 1.5 mg/dL). Specifically these are related to kidney function but it could have origins from a case of diabetes, which condition I will check in detail in September.

    Our friend survivor Traveller gave me a tip by mail informing that “any extra fat around the waist is turned in to estradiol which can reduce T score”. Thanks Traveller, sorry for commenting about the tip here but it could well be the reason in my case and it may help the many interested in our comments.
    I have the same weight of last year though created a bigger “Michelin-tire” around my waist. I know that higher creatinine also relates to hypothyroidism (Thyroid dysfunction due to hormonal treatments). I wonder if such could also relate to a problem in the adrenal glands (on the top of the kidneys) producing the stuff. This substance/steroid increases when biosynthesized from testosterone in fat, leading to a deficiency of beneficial testosterone.

    http://www.lifeextension.com/magazine/2008/11/dangers-of-excess-estrogen-in-the-aging-male/page-02

    I will keep the antennas up.

    Regards

    VG

     

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    Now you see me now you don’t

    For some unexplained reason my PSA is standing still. It seems that the bandit decided to keep a low profile for not being detected but I am not enjoying the “thriller series”. This time the PSA gone lower 0.02 points to become PSA=1.46 ng/ml (1.48 in August).
    Together with the above PSA histology the doubling time calculates to PSADT= 76 months (6.3 years).

    I decided to inform this result to Coimbra hospital (that is running the clinical trial for the G68 PSMA PET/MRI) but now I am worried of losing the opportunity of free participation in the trial. They may stop it in mid 2016 by which time the PSA will be at the right level. Such would cause me to do the test later but at my own expense (about 3,000 Euros). Not sure yet on what to do.
    In regards to the Diabetes tests they all come within the normal levels. I will have to check any kidney mal functioning.

    Well this post is just to inform ya about my saga. Though, this is the time for pomegranates and pumpkins and I am enjoying them in this All Saints Feast.

    Best wishes to all comrades.

    VG   Image result for pumpkin icons

  • Josephg
    Josephg Member Posts: 326 Member

    Now you see me now you don’t

    For some unexplained reason my PSA is standing still. It seems that the bandit decided to keep a low profile for not being detected but I am not enjoying the “thriller series”. This time the PSA gone lower 0.02 points to become PSA=1.46 ng/ml (1.48 in August).
    Together with the above PSA histology the doubling time calculates to PSADT= 76 months (6.3 years).

    I decided to inform this result to Coimbra hospital (that is running the clinical trial for the G68 PSMA PET/MRI) but now I am worried of losing the opportunity of free participation in the trial. They may stop it in mid 2016 by which time the PSA will be at the right level. Such would cause me to do the test later but at my own expense (about 3,000 Euros). Not sure yet on what to do.
    In regards to the Diabetes tests they all come within the normal levels. I will have to check any kidney mal functioning.

    Well this post is just to inform ya about my saga. Though, this is the time for pomegranates and pumpkins and I am enjoying them in this All Saints Feast.

    Best wishes to all comrades.

    VG   Image result for pumpkin icons

    Latest Test Results

    Very good PSA test results news, Vasco.

    I totally understand your concern regarding the impact of these good PSA test results on your potential eligibility for the Coimbra Hospital clinical trial.  How ironic that good PSA test results can potentially have less than totally desired results in other, yet related areas.

    In my opinion, however, your good PSA test results overweigh the other potential less attractive ramifications.

    Tonight, I will toast you and your good PSA test results with a glass or three of red wine.

  • traveler
    traveler Member Posts: 28 Member

    Now you see me now you don’t

    For some unexplained reason my PSA is standing still. It seems that the bandit decided to keep a low profile for not being detected but I am not enjoying the “thriller series”. This time the PSA gone lower 0.02 points to become PSA=1.46 ng/ml (1.48 in August).
    Together with the above PSA histology the doubling time calculates to PSADT= 76 months (6.3 years).

    I decided to inform this result to Coimbra hospital (that is running the clinical trial for the G68 PSMA PET/MRI) but now I am worried of losing the opportunity of free participation in the trial. They may stop it in mid 2016 by which time the PSA will be at the right level. Such would cause me to do the test later but at my own expense (about 3,000 Euros). Not sure yet on what to do.
    In regards to the Diabetes tests they all come within the normal levels. I will have to check any kidney mal functioning.

    Well this post is just to inform ya about my saga. Though, this is the time for pomegranates and pumpkins and I am enjoying them in this All Saints Feast.

    Best wishes to all comrades.

    VG   Image result for pumpkin icons

    latest results

    Vasco,

    As much as I know you would like to join the trial at Coimbra, the fact that the Bandit has "gone to sleep" is a good thing. If the doubling time remains even half of what it is currently you can relax and enjoy your golf, red wine and fruit trees!!

     

    I am very pleased for you and Karen and pass on my best wishes.

     

  • Rakendra
    Rakendra Member Posts: 197 Member
    God News

    I am happy for you, and selfishly, we cannot afford to lose you.  I believe the insights and information you share are simply not available anywhere else.  Love, Rakendra

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,767 Member
    Rakendra said:

    God News

    I am happy for you, and selfishly, we cannot afford to lose you.  I believe the insights and information you share are simply not available anywhere else.  Love, Rakendra

    Indeed

     

    Ditto what Rakenda said !    While there are a half-dozen long-term guys here who are wonderful sources of detailed information, I would not recognize this board without you , Vasco.

    But, of course, there is nothing to suggest that you won't be here for a very long time to come,

    max

  • Will Doran
    Will Doran Member Posts: 207
    Happy Thanksgiving

    VG

    Glad to hear you continue to do well.  I have also found that all the information you have sent us is very helpful. I am very Thankful for all you have taught me.  I think we all have much to be thankful for this year.  We are all still here and seem to be holding our own.

    Best wishes to all for a Very Happy Thanksgiving, and a Wonderful Christmas Season and a Great New Year.  Enjoy every minute of the season.

    Be assured that ALL are in my thoughts and Prayers.

    Keep up the good, hard fight.

    Peace and God Bless

    Love to all,

    Will

     

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    The PSA has plateaued

    Update

    The PSA has plateaued. This time it come at PSA=1.41 ng/ml a very similar result to the previous ones, since March 2015 (1.49). The bandit is there and probably playing me a trick. I have not changed anything (life style, diet, medications, etc) to have it so quiet.
    The testosterone is also slightly lower this time at T=181 ng/dL (T=209 in Aug 2015). I figured that the lower T may be due to an increase of Estradiol, typical of men when we get older. E is made of testosterone and my result was E=35.27 pg/ml (the normal level for man is up to 41 pg/ml).

    I am not sure of the reason but my GP included in the test sheet of this time a request for Prolactin (PRL). This is a hormone produced at the pituitary for stimulating the production of milk (????). Surely HT has created boobs in me but they are unnoticed and do not drip milk. Maybe I am at the risk for breast cancer and such a PRL test is necessary. Well, PRL was 3.80 ng/ml and the normal range in men is 2.5 - 17.4 ng/ml.

    Estradiol infusions or patches are used by some oncologists in the treatment of PCa, in particular to hormone refractory patients. I wonder if the quantity of Estradiaol circulating in my system is that enough to pin-down cancer’s activity.(?)

    This is 4 years since starting this long “vacation” off drugs. I may well reach my dream of a 5 years period of free of symptoms and free of the side effects.

    Wishing the best to all my comrades.

    VG

     

  • Josephg
    Josephg Member Posts: 326 Member

    The PSA has plateaued

    Update

    The PSA has plateaued. This time it come at PSA=1.41 ng/ml a very similar result to the previous ones, since March 2015 (1.49). The bandit is there and probably playing me a trick. I have not changed anything (life style, diet, medications, etc) to have it so quiet.
    The testosterone is also slightly lower this time at T=181 ng/dL (T=209 in Aug 2015). I figured that the lower T may be due to an increase of Estradiol, typical of men when we get older. E is made of testosterone and my result was E=35.27 pg/ml (the normal level for man is up to 41 pg/ml).

    I am not sure of the reason but my GP included in the test sheet of this time a request for Prolactin (PRL). This is a hormone produced at the pituitary for stimulating the production of milk (????). Surely HT has created boobs in me but they are unnoticed and do not drip milk. Maybe I am at the risk for breast cancer and such a PRL test is necessary. Well, PRL was 3.80 ng/ml and the normal range in men is 2.5 - 17.4 ng/ml.

    Estradiol infusions or patches are used by some oncologists in the treatment of PCa, in particular to hormone refractory patients. I wonder if the quantity of Estradiaol circulating in my system is that enough to pin-down cancer’s activity.(?)

    This is 4 years since starting this long “vacation” off drugs. I may well reach my dream of a 5 years period of free of symptoms and free of the side effects.

    Wishing the best to all my comrades.

    VG

     

    The PSA has plateaued

    This sounds like good news, Vasco.

    80% of the way to your 5th year of vacation.

    I will toast you this evening with a glass of red wine.

    You are an inspiration to all of us.

  • Old Salt
    Old Salt Member Posts: 1,007 Member

    The PSA has plateaued

    Update

    The PSA has plateaued. This time it come at PSA=1.41 ng/ml a very similar result to the previous ones, since March 2015 (1.49). The bandit is there and probably playing me a trick. I have not changed anything (life style, diet, medications, etc) to have it so quiet.
    The testosterone is also slightly lower this time at T=181 ng/dL (T=209 in Aug 2015). I figured that the lower T may be due to an increase of Estradiol, typical of men when we get older. E is made of testosterone and my result was E=35.27 pg/ml (the normal level for man is up to 41 pg/ml).

    I am not sure of the reason but my GP included in the test sheet of this time a request for Prolactin (PRL). This is a hormone produced at the pituitary for stimulating the production of milk (????). Surely HT has created boobs in me but they are unnoticed and do not drip milk. Maybe I am at the risk for breast cancer and such a PRL test is necessary. Well, PRL was 3.80 ng/ml and the normal range in men is 2.5 - 17.4 ng/ml.

    Estradiol infusions or patches are used by some oncologists in the treatment of PCa, in particular to hormone refractory patients. I wonder if the quantity of Estradiaol circulating in my system is that enough to pin-down cancer’s activity.(?)

    This is 4 years since starting this long “vacation” off drugs. I may well reach my dream of a 5 years period of free of symptoms and free of the side effects.

    Wishing the best to all my comrades.

    VG

     

    Looking good, AFAIK

    The results look good to me, considering your background. Enjoy!

    Why do you write that the bandit has played a trick on you?

    PS: The change in the testosterone looks non-significant to me.

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

    The PSA has plateaued

    Update

    The PSA has plateaued. This time it come at PSA=1.41 ng/ml a very similar result to the previous ones, since March 2015 (1.49). The bandit is there and probably playing me a trick. I have not changed anything (life style, diet, medications, etc) to have it so quiet.
    The testosterone is also slightly lower this time at T=181 ng/dL (T=209 in Aug 2015). I figured that the lower T may be due to an increase of Estradiol, typical of men when we get older. E is made of testosterone and my result was E=35.27 pg/ml (the normal level for man is up to 41 pg/ml).

    I am not sure of the reason but my GP included in the test sheet of this time a request for Prolactin (PRL). This is a hormone produced at the pituitary for stimulating the production of milk (????). Surely HT has created boobs in me but they are unnoticed and do not drip milk. Maybe I am at the risk for breast cancer and such a PRL test is necessary. Well, PRL was 3.80 ng/ml and the normal range in men is 2.5 - 17.4 ng/ml.

    Estradiol infusions or patches are used by some oncologists in the treatment of PCa, in particular to hormone refractory patients. I wonder if the quantity of Estradiaol circulating in my system is that enough to pin-down cancer’s activity.(?)

    This is 4 years since starting this long “vacation” off drugs. I may well reach my dream of a 5 years period of free of symptoms and free of the side effects.

    Wishing the best to all my comrades.

    VG

     

    .

    Thinking good thoughts for you.......a toast tonight.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member

    The PSA has plateaued

    Update

    The PSA has plateaued. This time it come at PSA=1.41 ng/ml a very similar result to the previous ones, since March 2015 (1.49). The bandit is there and probably playing me a trick. I have not changed anything (life style, diet, medications, etc) to have it so quiet.
    The testosterone is also slightly lower this time at T=181 ng/dL (T=209 in Aug 2015). I figured that the lower T may be due to an increase of Estradiol, typical of men when we get older. E is made of testosterone and my result was E=35.27 pg/ml (the normal level for man is up to 41 pg/ml).

    I am not sure of the reason but my GP included in the test sheet of this time a request for Prolactin (PRL). This is a hormone produced at the pituitary for stimulating the production of milk (????). Surely HT has created boobs in me but they are unnoticed and do not drip milk. Maybe I am at the risk for breast cancer and such a PRL test is necessary. Well, PRL was 3.80 ng/ml and the normal range in men is 2.5 - 17.4 ng/ml.

    Estradiol infusions or patches are used by some oncologists in the treatment of PCa, in particular to hormone refractory patients. I wonder if the quantity of Estradiaol circulating in my system is that enough to pin-down cancer’s activity.(?)

    This is 4 years since starting this long “vacation” off drugs. I may well reach my dream of a 5 years period of free of symptoms and free of the side effects.

    Wishing the best to all my comrades.

    VG

     

    Glad to hear it!

    Glad to hear it, Vasco.  Hope it continues.  Goodl luck!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,767 Member

    .

    Thinking good thoughts for you.......a toast tonight.

    Toast indeed

     

    Yes Hopeful, a toast for Vasco's wonderful numbers indeed !

    But I work tonight, so toasting now, at around noon...  max

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    edited June 2016 #36
    PSA results are on and still consistent with a slow increase

    This month PSA come as 1.59 ng/ml. This is still consistent with a slow increase that started in May 2014. The data provides a doubling time of PSADT=6.4 years (77 months). Here are the plotted results:

    May 2014; PSA=1.20 ; T=341
    Sep 2014; PSA=1.24 ; T=356
    Dec 2014; PSA=1.28 ; T=278
    Mar 2015; PSA=1.49 ; T=?
    Jun 2015; PSA=1.30 ; T=252
    Nov 2015; PSA=1.46 ; T=?
    Mar 2016; PSA=1.41 ; T=181
    Jun 2016; PSA=1.59 ; T=?

    As I posted above, my goal is to have a PET exam (image study) before restarting the hormonal treatment (IADT). Along this waiting period several PET contrast agents have immerged according to their efficacy in detecting oligometastases. The one proving to provide the best positive image (the contender) is the PSMA. In any case there are still others in the drawing boards being researched so that my choice may be fixed by the time the PSA becomes closer to 2.0 ng/ml.

    So far this long PSADT is providing me a longer term off-drugs and therefore off the side effects. I am enjoying the opportunity that this long vacation gives me to care to my fruit trees and vegetables.

    Best wishes to all.

    VGama

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    YES. YES

    Very glad for this news.

     

    Time for another celebration. 

     

     

  • Will Doran
    Will Doran Member Posts: 207
    Good News

    VGama

    Great news.  Congratulations. 16 years, that's great.  My hopes and prayers are that this continues for you.

    Peace and God Bless

    Will

  • Josephg
    Josephg Member Posts: 326 Member
    Great News!

    That is great news, Vasco!  Still plenty of time before 2.0 is reached, and it becomes decision time, again.

    I will definitely toast to you this evening with a glass of red wine or two.

    Let us know how your fruit trees and vegetables are progressing, as well.

  • traveler
    traveler Member Posts: 28 Member
    edited June 2016 #40

    PSA results are on and still consistent with a slow increase

    This month PSA come as 1.59 ng/ml. This is still consistent with a slow increase that started in May 2014. The data provides a doubling time of PSADT=6.4 years (77 months). Here are the plotted results:

    May 2014; PSA=1.20 ; T=341
    Sep 2014; PSA=1.24 ; T=356
    Dec 2014; PSA=1.28 ; T=278
    Mar 2015; PSA=1.49 ; T=?
    Jun 2015; PSA=1.30 ; T=252
    Nov 2015; PSA=1.46 ; T=?
    Mar 2016; PSA=1.41 ; T=181
    Jun 2016; PSA=1.59 ; T=?

    As I posted above, my goal is to have a PET exam (image study) before restarting the hormonal treatment (IADT). Along this waiting period several PET contrast agents have immerged according to their efficacy in detecting oligometastases. The one proving to provide the best positive image (the contender) is the PSMA. In any case there are still others in the drawing boards being researched so that my choice may be fixed by the time the PSA becomes closer to 2.0 ng/ml.

    So far this long PSADT is providing me a longer term off-drugs and therefore off the side effects. I am enjoying the opportunity that this long vacation gives me to care to my fruit trees and vegetables.

    Best wishes to all.

    VGama

    Great News Vasco!!

    Great News Vasco!!

    I wish you all the very best and I will toast you tonight!!

  • VascodaGama
    VascodaGama Member Posts: 3,581 Member
    edited October 2016 #41
    Keep the Faith

    In March of 2014 I posted here a thread under the title “IADT- vacations period very close to its end”. I did it because of PSA fast increasing results since the end of the effectiveness of the last Eligard shot (Leuprolide). I was freaking out and anxiety has set in.

    Since then the PSA has maintained a sluggish advancement in a sort of plateaued pattern. The last PSA (Sep 2016) at 1.56 ng/ml again confirms the situation (Jun 2016 PSA=1.59). Another interesting aspect of the results is that the testosterone which has been decreasing since Sep of 2014, has now double the previous (T=181) increasing to T= 364, meaning that I have more T-serum in circulation very opportune and tempting for the bandit to start a T frenzy cocktail party again.

    This result marks the period of vacations away from hormonal drugs in 4 .5 years and 5 years (58 months) since my last Eligard 45mg shot. I am still far from the PSA=2.0 trigger threshold to restart HT. Before that I will have the expected image study so much discussed in above posts. The length on vacation have provided me with chances in getting better image exams that were still on the drawing boards before starting this thread.

    In the last blood tests I also have verified an increase in liver‘s function indicators (AST, ALT, GGT) which have double now at AST=47 UI/L; ALT=83 UI/L; GGT=78 UI/L. ALP has decreased to 63 (indication of other enzymes proliferation). The Microalbuminuria,Creatinine and Glomerular filtration rate (GFR) maintain the higher levels now making me to believe that I am experiencing pre-diabetes. The best I can do is to change diets, giving up with sweets, animal protein and animal fat, and give preferences to fruits, vegetables, and whole grains products, in other words, trying to become healthy again. Can I do it?

    Best to all survivors in their journeys,

    VG