Checkup Status - Post-Radiation / Existing Hormone - 8/5/2021
Comments
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Confronting systemic disease
Josephg,
Thanks for the update. I like the perspective and the way your oncologist is having in your treatment. I think she is doing a great job. I wonder if she considers you to be systemic. Surely without possibilities in locating the bandit one must think it to exist everywhere so that systemic approaches are most recommended.
The information I've gathered in cases similar to yours in regards to the trigger threshold for action (used by the majority) is PSA=1.0 ng/ml. The trials you comment above got lower thresholds that may provide more assurances in outcomes for longer periods in chemical free failure. This means longer periods of control.
I wonder what maybe the substance (protocol) of the vaccine and which molecules are to be targeted. Are they using a radioisotope?
The hormonal combination is not a newer approach but having it in trials is new. Several famous oncologists (eg; Dr. Bob Leibowitz) have been using what they call as cocktails quite successfully. Along the years this mixture has been perfected and with the latest knowledge on the genetics (providing clues to what may work or not work in a particular patient) one has more assurances and better control in refractories.Participating in trials is for most of the cases the best way in being treated for the constant vigilance on the overall health developments. It is free of charge and strict in regards to any added medication one may be in need along the trial period but one is in good hands and will have access to the latest exams and medical approaches. In your shoes I would accept if I was assured of being grouped in the ones receiving the real drug.
Both approaches are proper in systemic cases and palliative but vaccination could result in killing the bandit if the isotope is a radiopharmaceutical directly aiming prostatic cells, similar to the famous PSMA. The side effects will be different so that one needs to investigate in advance what to expect soon after and later what influence such substances will have in other aging illnesses.
The next PSA in four months will be significant in your future approaches. This is a reasonable time to try gathering additional information on the trials.
Here is a list of trials for recurrence PCa cases. You may read what is on/coming in regards to vaccination or ADT;Best wishes in your continuing journey.
VGama
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58 Month Checkup
Hi Folks,
I just received my latest PSA test result, and I wanted to share it with you.
The timing of this test is approximately 58 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 52 months after my last salvage radiation treatment (38 visits, 68 Greys).
The result for this PSA test is 0.19, the fifth detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation treatment. This also corresponds to the fifth straight rise in my PSA, although I am advised that a 0.06 rise over 6 months is not really that large. My Oncologist stated that in her opinion, we should stay the course of monitoring the PSA increases, with my next test being scheduled for 4 months from now, a slightly shorter interval between tests.
My Oncologist further advised me that the institute is running 2 clinical trials, one which uses a vaccination, and one which uses multiple hormones in combination, and the hypothesis is that these treatments may slow the growth of the cancer cells more than the traditional one hormone therapy, such as Lupron. I am still a ways off from potentially being considered for participation in these clinical trials, as the PSA threshold for being considered is 0.5 for one, and 0.8 for the other.
I asked my Oncologist what PSA level needs to be reached, before we start running scans to see if we can locate the bandit. She stated that typically she would recommend scans, once the PSA level reached the neighborhood of 2.0 to 4.0, as the odds of actually finding the cancer would be very low, at lower PSA levels. She may reconsider that position, if there is a sudden, unexpected jump in the PSA level in a future test. Also, we may do scans earlier, if any of the potential clinical trials would require any initial benchmarking scans, before joining the trial.
This month marks the 7th year since I had my original biopsy, and discovered that I had PCa. As it is for all of us, I will continue to take one day at a time on this long journey.
Addendum: One item that I failed to state in this post yesterday is that my quality of life is very good. We often talk about the balance between treatment and therapeutic options and the PCa patient's quality of life. As can be seen, I've gone through many treatments and therapies on this journey, and I have incurred most of the known side effects, plus a few more. However, through it all, I can honestly state that my daily quality of life continues to be very good, and this is hugely important. We cannot control what life throws at us, but we can control how we respond to each and every life event. Over this past weekend, myself and my immediate family traveled to spend quality time with dear friends, and it made me reflect upon just how fortunate I am that I can still interact and contribute positively to those around me in my daliy life.
Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.
Related History and Data:
Post-Robotic Prostate Removal Surgery Pathology Report
A. Lymph nodes, right pelvic: Two (2) lymph nodes; negative for metastasis.
B. Lymph nodes, left pelvic: Two (2) lymph nodes; negative for metastasis.
C. Prostate, radical resection:
1. Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.
2. No lymphatic/vascular invasion is present.
3. Perineural invasion is present.
4. Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).
5. The Seminal vesicles are free of carcinoma.
6. The inked margins are free of carcinoma.
7. High-grade PIN is present.
8. Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.
D. Left mid margin: Fibrovascular tissue; negative for tumor.
Diagnosis Comment: AJCC: pT3a NO
Robotic Prostate Removal Surgery
11/21/2011
AUS 800 Artificial Sphincter Implant Surgery
1/9/2013
Hormone Therapy (Lupron tri-monthly and Casodex daily)
Started 5/4/2013
Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)
Radiation Therapy (38 visits, 68 Grays)
Started 6/4/2013
Stopped 8/9/2013
PSA History
5.22 - 6/28/2011 (59 years old)
0.05 - 12/22/2011
0.05 - 3/25/2012
0.05 - 6/22/2012
0.06 - 10/13/2012
0.08 - 12/31/2012
0.11 - 3/30/2013
0.13 - 4/23/2013
0.02 - 8/6/2013
0.02 - 11/26/2013
<0.015 - 7/28/2014
<0.015 - 1/3/2015
<0.015 - 7/7/2015
0.02 - 1/15/2016
0.05 - 8/23/2016
0.07 - 2/21/2017
0.10 - 8/22/2017
0.13 - 12/29/2017
0.19 - 6/18/2018
Related Permanent Side Effects
Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)
ED - Prostate removal surgery (had to remove the left side nerve bundle)
Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex
Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation. Biopsy negative.
Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):
Artificial Sphincter Experiences
http://csn.cancer.org/comment/1324584#comment-1324584
http://csn.cancer.org/comment/1326323#comment-1326323
http://csn.cancer.org/comment/1339326#comment-1339326
http://csn.cancer.org/comment/1339561#comment-1339561
http://csn.cancer.org/comment/1344785#comment-1344785
http://csn.cancer.org/comment/1413239#comment-1413239
Hormone and Radiation Salvage Treatment Experiences
http://csn.cancer.org/comment/1414101#comment-1414101
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Thank YouVascodaGama said:Confronting systemic disease
Josephg,
Thanks for the update. I like the perspective and the way your oncologist is having in your treatment. I think she is doing a great job. I wonder if she considers you to be systemic. Surely without possibilities in locating the bandit one must think it to exist everywhere so that systemic approaches are most recommended.
The information I've gathered in cases similar to yours in regards to the trigger threshold for action (used by the majority) is PSA=1.0 ng/ml. The trials you comment above got lower thresholds that may provide more assurances in outcomes for longer periods in chemical free failure. This means longer periods of control.
I wonder what maybe the substance (protocol) of the vaccine and which molecules are to be targeted. Are they using a radioisotope?
The hormonal combination is not a newer approach but having it in trials is new. Several famous oncologists (eg; Dr. Bob Leibowitz) have been using what they call as cocktails quite successfully. Along the years this mixture has been perfected and with the latest knowledge on the genetics (providing clues to what may work or not work in a particular patient) one has more assurances and better control in refractories.Participating in trials is for most of the cases the best way in being treated for the constant vigilance on the overall health developments. It is free of charge and strict in regards to any added medication one may be in need along the trial period but one is in good hands and will have access to the latest exams and medical approaches. In your shoes I would accept if I was assured of being grouped in the ones receiving the real drug.
Both approaches are proper in systemic cases and palliative but vaccination could result in killing the bandit if the isotope is a radiopharmaceutical directly aiming prostatic cells, similar to the famous PSMA. The side effects will be different so that one needs to investigate in advance what to expect soon after and later what influence such substances will have in other aging illnesses.
The next PSA in four months will be significant in your future approaches. This is a reasonable time to try gathering additional information on the trials.
Here is a list of trials for recurrence PCa cases. You may read what is on/coming in regards to vaccination or ADT;Best wishes in your continuing journey.
VGama
As always, thank you for your perspective, comments, and suggestions, Vasco. Very much appreciated. I will review the informational link that you provided, and I will see if I can obtain some additional information on the clinical trials. I also updated my post with an addendum, as I forgot to include a very important point of view.
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Not yet systemic
Josephg,
I am on a similar status to yours. I got failed RP (2000) and failed RT (2006) and have been on ADT (intermittently approach) since 2010, having a reasonable quality of life along the 18 years as a survivor. The ADT intermittent technique allowed me the time to wait for a rise of the PSA permitting me to get a PET F18-CHF (Jan 2018) to locate the bandit, which I did successfully.
I believe that your oncologist has not consider you yet systemic. She is following a similar approach to my treatment by allowing the PSA to rise (above 1.5 to 2.0) to try locating the bandit with a PET scan (avoiding false negative results common in images done in low levels of PSA). With the location of the cancer one gets another opportunity for eliminating the cancer for good with spot radiation (the so called oligometastatic treatment). However this location should be at propitious areas away from the fields covered in your RT of 2013.
As I commented before I admire her work and judgment on your situation. I wonder what trials are she dealing with. Probably it regards some newer weapons in the hormonal arsenal or something new to everyone, such as a newer radiopharmaceutical similar to LU177. I would appreciate if you tell us the name and contents of the trial.
Many other doctors would just put you on hormonal treatment by now, but ADT can be started at any time without the risks of loosing its benefits. At least she is moving forward for the best you could get at present times.I hope you continue updating us of your progress.
Best wishes,
VGama
in terms of recurrence
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62 Month Checkup
Hi Folks,
I just received my latest PSA test result, and I wanted to share it with you.
The timing of this test is approximately 62 months after my 2nd and last Lupron shot (two 3-month dosages), and also my last salvage radiation treatment (38 visits, 68 Greys).
The result for this PSA test is 0.26, the sixth detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation and hormone treatments. This result also counts as going over the official 0.20 PSA level threshhold that confirms the biological failure of the past treatments that I have received. Based upon my last 3 PSA results, my recent PSA doubling time is approximately one year, and this would appear to be consistent with the 4+3 Gleason score that I received from the prostate pathology report, subsequent to removal. My Oncologist stated that in her opinion, we should stay the course of monitoring the PSA increases, with my next test being scheduled for 4 months from now.
My Oncologist further advised me that we will keep open the possibility of my joining one of the two clinical trials that the institute is running, but my PSA needs to rise over 0.50 to be considered for one, and over 0.80 for the other. If I am not admitted to the clinical trials, or if I choose not to participate, my Oncologist stated that we will let my PSA continue to rise to 1.50 to 2.00, before considering any additional tests in the form of scans, to see if we can locate the bandit.
Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.Related History and Data:
Post-Robotic Prostate Removal Surgery Pathology Report
A. Lymph nodes, right pelvic: Two (2) lymph nodes; negative for metastasis.
B. Lymph nodes, left pelvic: Two (2) lymph nodes; negative for metastasis.
C. Prostate, radical resection:
1. Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.
2. No lymphatic/vascular invasion is present.
3. Perineural invasion is present.
4. Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).
5. The Seminal vesicles are free of carcinoma.
6. The inked margins are free of carcinoma.
7. High-grade PIN is present.
8. Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.
D. Left mid margin: Fibrovascular tissue; negative for tumor.
Diagnosis Comment: AJCC: pT3a NO
Robotic Prostate Removal Surgery
11/21/2011
AUS 800 Artificial Sphincter Implant Surgery
1/9/2013
Hormone Therapy (Lupron tri-monthly and Casodex daily)
Started 5/4/2013
Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)
Radiation Therapy (38 visits, 68 Grays)
Started 6/4/2013
Stopped 8/9/2013
PSA History
5.22 - 6/28/2011 (59 years old)
0.05 - 12/22/2011
0.05 - 3/25/2012
0.05 - 6/22/2012
0.06 - 10/13/2012
0.08 - 12/31/2012
0.11 - 3/30/2013
0.13 - 4/23/2013
0.02 - 8/6/2013
0.02 - 11/26/2013
<0.015 - 7/28/2014
<0.015 - 1/3/2015
<0.015 - 7/7/2015
0.02 - 1/15/2016
0.05 - 8/23/2016
0.07 - 2/21/2017
0.10 - 8/22/2017
0.13 - 12/29/2017
0.19 - 6/18/2018
0.26 - 10/15/2018
Related Permanent Side Effects
Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)
ED - Prostate removal surgery (had to remove the left side nerve bundle)
Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex
Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation. Biopsy negative.
Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):
Artificial Sphincter Experiences
http://csn.cancer.org/comment/1324584#comment-1324584
http://csn.cancer.org/comment/1326323#comment-1326323
http://csn.cancer.org/comment/1339326#comment-1339326
http://csn.cancer.org/comment/1339561#comment-1339561
http://csn.cancer.org/comment/1344785#comment-1344785
http://csn.cancer.org/comment/1413239#comment-1413239
Hormone and Radiation Salvage Treatment Experiences
http://csn.cancer.org/comment/1414101#comment-1414101
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66 Month Checkup
Hi Folks,
I just received my latest PSA test result, and I wanted to share it with you.
The timing of this test is approximately 66 months after my 2nd and last Lupron shot (two 3-month dosages), and also my last salvage radiation treatment (38 visits, 68 Greys).
The result for this PSA test is 0.29, the seventh detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation and hormone treatments. My Oncologist was very pleased, and somewhat surprised, with the very small incremental change from 4 months ago (was 0.26 in October 2018). She stated that we should stay the course of monitoring the PSA increases, with my next test being scheduled for 3 months from now. There are a couple of clinical trial options that may be available for me, once my PSA rises to above 0.50, but I am in no rush to achieve the higher PSA number.
I will keep a copy of this update thread on my personal server, in the event that CSN incurs another mysterious 3 month data loss.
Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.
Related History and Data:
Post-Robotic Prostate Removal Surgery Pathology Report
A. Lymph nodes, right pelvic: Two (2) lymph nodes; negative for metastasis.
B. Lymph nodes, left pelvic: Two (2) lymph nodes; negative for metastasis.
C. Prostate, radical resection:
1. Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.
2. No lymphatic/vascular invasion is present.
3. Perineural invasion is present.
4. Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).
5. The Seminal vesicles are free of carcinoma.
6. The inked margins are free of carcinoma.
7. High-grade PIN is present.
8. Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.
D. Left mid margin: Fibrovascular tissue; negative for tumor.
Diagnosis Comment: AJCC: pT3a NO
Robotic Prostate Removal Surgery
11/21/2011
AUS 800 Artificial Sphincter Implant Surgery
1/9/2013
Hormone Therapy (Lupron tri-monthly and Casodex daily)
Started 5/4/2013
Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)
Radiation Therapy (38 visits, 68 Grays)
Started 6/4/2013
Stopped 8/9/2013
PSA History
5.22 - 6/28/2011 (59 years old)
0.05 - 12/22/2011
0.05 - 3/25/2012
0.05 - 6/22/2012
0.06 - 10/13/2012
0.08 - 12/31/2012
0.11 - 3/30/2013
0.13 - 4/23/2013
0.02 - 8/6/2013
0.02 - 11/26/2013
<0.015 - 7/28/2014
<0.015 - 1/3/2015
<0.015 - 7/7/2015
0.02 - 1/15/2016
0.05 - 8/23/2016
0.07 - 2/21/2017
0.10 - 8/22/2017
0.13 - 12/29/2017
0.19 - 6/18/2018
0.26 - 10/15/2018
0.29 – 2/11/2019
Related Permanent Side Effects
Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)
ED - Prostate removal surgery (had to remove the left side nerve bundle)
Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex
Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation. Biopsy negative.
Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):
Artificial Sphincter Experiences
http://csn.cancer.org/comment/1324584#comment-1324584
http://csn.cancer.org/comment/1326323#comment-1326323
http://csn.cancer.org/comment/1339326#comment-1339326
http://csn.cancer.org/comment/1339561#comment-1339561
http://csn.cancer.org/comment/1344785#comment-1344785
http://csn.cancer.org/comment/1413239#comment-1413239
Hormone and Radiation Salvage Treatment Experiences
http://csn.cancer.org/comment/1414101#comment-1414101
http://csn.cancer.org/comment/1414282#comment-1414282
http://csn.cancer.org/node/299431
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Joseph
Joseph
Really sorry to hear this. I hope you have success getting on a trial.
H
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Doubling rate
Hi Joe,
I did a rule of thumb calculation of your doubling rate and got a year, I then used the Sloane Kettering tool and got 11 months.
https://www.mskcc.org/nomograms/prostate/psa_doubling_time
However that is using line fitting so it is not real world, it could slow down, level out or speed up a bit.
I suspect that there is still some shots in the locker for ADT so you could always try six months of degarelix to kick it where the sun does not shine if you do not get a better offer immediately, that could buy you at least a couple of years or more as it gets knocked down and gets up off the canvass again.
Do you have a testosterone level?
Best wishes,
Georges0 -
Thank You
Thank you Hew and Georges for your kind words. Much appreciated.
Overall, I'm pleased with the results of this checkup, as I had anticipated my PSA rising closer to .35 - .40. I recognize that it is only one data point in a continuum, but it is an encouraging one for this past 4 month period.
My testosterone level was 224, when it was last measured in October 2018.
I take my PCA situation one day at a time, and I work hard at living each day to its fullest.
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5 Years in Vacations
Josephg,
In my calculations you are celebrating this February 5 years in vacation out from treatment effects. You were in remission in the initial two years post treatment and the biochemical failure was only verified on your second increase from nadir in August 2016. Recurrence was verified in February of 2017. Since then the curve of the PSA has increased at a intermediate speed of over 9 months but slowing down toward a plateau.
Along my 6 years of vacations, I have experienced a similar curve of constant increases followed by plateaus (at three occasions). I take this occurrence as the period when the bandit is fighting the local cells to try to accommodate itself at the newer environment. Invading cancer do not easily set foot at others house. It needs to conquer the new habitat and unfortunately to us it usually wins that war advancing further in the process.
Treating is necessary to stop its advance but existing palliative forms administered continuously only lead to earlier refractory. We have to give that possibility of expansion so that cancerous cells will not experience the need in mutations for survival (those switches incorporated in our genetics). Intermittent approaches permit this control regulated by PSA thresholds. I wonder what is the value reserved for you by your oncologist. I think that her comment on the 0.50 refers to the minimal value for admission into a trial. The threshold for restarting ADT may be further up. I think that at PSA=0.29 ng/ml you are still far from that timing.
I will wait for another update in your fantastic report.
Best wishes.
VGama
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Vacations and Strategy
Thank you, Vasco, for today's kind words, and most important, for your continuing selfless giving of thought-provoking information, wide-ranging perspectives, and your unwavering candor. Very much appreciated by everyone in this Forum.
You are absolutely correct, regarding the strategy and path forward set by my Oncologist. The upcoming 0.5 PSA threshold is specifically for consideration of participating in a clinical trial. This is a potential short-term tactic that is aligned with the long-term strategy. If the trial is successful, the rate of my rising PSA levels will be slowed down.
Regarding the strategy, my Oncologist still wants an opportunity to search for the bandit at the appropriate time, with the goal of potentially having another opportunity to eradicate it. We understand the the probability for success through finding the bandit and eradicating it is low. However, as technology continues to advance in scanning techniques and chemical agents, anything is possible, given time. And, if the scanning ultimately fails to locate the bandit, I still have the day-to-day success of delaying the ADT protocols further into the future, and increasing the timeline for living my current high quality of life.
My Oncologist has not given me a firm number, regarding what the PSA level needs to rise up to, in order to trigger the scanning protocol. It may be at the 2.0 PSA level, or it may be lower. I'm sure that the PSA rate of change is factoring into her continuing tracking and analysis and ultimate recommendations. If the scanning protocol to locate the bandit is not successful, then we will initiate ADT at the appropriate time.
In the meantime, my Oncologist advises me to consider my existing PCa status to be a 'condition' that I live with, and we will continue to treat that 'condition' as needed, and when needed, to preserve and prolong my quality of life for me and those around me.
One day at a time.
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73 Month Checkup
Hi Folks,
I have not updated my status since February, as it has been a busy year for me.
In my last February update my PSA was 0.29, and in May it rose to 0.41, and in September it rose to 0.43. The timing of the most recent September test was approximately 73 months after my 2nd and last Lupron shot (two 3-month dosages), and also my last salvage radiation treatment (38 visits, 68 Greys). This September PSA test is the ninth detectible and rising PSA reading in a row, after 30 months of non-detectible readings, following the salvage radiation and hormone treatments.
My Oncologist is pleased that the sequential increases in the PSA readings are relatively small, and we will stay the course of monitoring the PSA increases, with my next test being scheduled for January. If there are no unexpected changes, we will continue on this course, until my PSA reaches the 2.0 range, at which time, I will undergo scans to see if the bandit can be located, and perhaps killed, though I recognize that the chances of detection are still small.
During this period, I declined to participate in a clinical trial, called Androgen Annihilation. This clinical trial involved administering hormone therapy, using multiple hormones at one time, with the desired result being a longer period of hormone therapy vacation time for the bandit to recover and start growing again, once the hormone treatments were stopped. There were three control groups, one given standard Lupron or Degarelix, one given Lupron or Degarelix and Apalutamide, and one given Lupron or Degarelix and Apalutamide and Abiraterone Acetate/Prednisone. I requested being placed in the group being given three hormones, versus the other two groups, so that I could receive the most aggressive treatment, but they refused to grant me that request. As such, it did not make sense to me to start hormone therapy earlier than I would otherwise need to do with my current course of monitoring PSA increases while hormone free, and risk becoming hormone resistant earlier in the future than I may otherwise become.
I also identified another permanent side effect associated with PCa therapies, most likely as a result of my previous hormone therapy. I am labeling it hyperhidrosis, or rapid and excessive sweating. Every time that I perform any very minor physical activities, even such as dressing in the morning, I start to sweat profusely. The sweating starts on my scalp and neck, as well as my wrists and lower forearms, and these are the same places where sweating started during my hot flashes, when I was on hormone therapy. The sweating on my head is so profuse, that I need to wear a headband, in order to stop the sweat from pouring down onto my face and eyes. If I am doing heavy work, such as yard work, I need to wring out my headband every 20 minutes, in order to remove the accumulated sweat. This condition has existed since my original hormone therapy; however, it has gotten significantly worse over the past 2 years. Please note that this is not a clinical diagnosis, but rather my lay opinion, based upon my experience and limited research.
On a related topic, in February, my AMS 800 artificial sphincter failed after 6 years of outstanding performance and dramatically improved quality of life. Diagnostic testing revealed that a leak in the device was the cause of the failure. In late August, I had the failed device replaced with a new AMS 800 device. The recovery from this procedure was a bit more difficult than the original procedure, probably because they had to first remove the original device, in addition to implanting the new replacement device. During the period of time since the failure of the original device, I have been reminded of just how much of a degradation in one’s quality of life can be, when one is 100% vertically incontinent. And, this is further proof that the difference in the quality of life for me, and anyone else, as a result of using an artificial sphincter implant, between being incontinent and continent, is huge.
Last, as an example that I am continuing to move forward and embrace life each and every day, even with the bandit being a continuing part of me, I had a total shoulder replacement surgery earlier this month. Over 30 years ago, I had decompression sickness while scuba diving, and the result of the incident was that the entrapped and expanding nitrogen bubbles killed the surface capillaries on the ball of my shoulder joint. The ball has deteriorated over the years, and recently partially collapsed, leaving me vulnerable to the ball slipping out of the socket. I mention having this surgical procedure only because I want to reinforce that having PCa does not need to interrupt your current pursuit of happiness in life, and successfully achieving the best quality of life possible for you.
Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.
Related History and Data:
Post-Robotic Prostate Removal Surgery Pathology Report
A. Lymph nodes, right pelvic: Two (2) lymph nodes; negative for metastasis.
B. Lymph nodes, left pelvic: Two (2) lymph nodes; negative for metastasis.
C. Prostate, radical resection:
1. Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.
2. No lymphatic/vascular invasion is present.
3. Perineural invasion is present.
4. Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).
5. The Seminal vesicles are free of carcinoma.
6. The inked margins are free of carcinoma.
7. High-grade PIN is present.
8. Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.
D. Left mid margin: Fibrovascular tissue; negative for tumor.
Diagnosis Comment: AJCC: pT3a NO
Robotic Prostate Removal Surgery
11/21/2011
AMS 800 Artificial Sphincter Implant Surgery
1/9/2013 - Original implant
9/28/2019 - Replacement implant (original implant failed, due to leakage)
Hormone Therapy (Lupron tri-monthly and Casodex daily)
Started 5/4/2013
Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)
Radiation Therapy (38 visits, 68 Grays)
Started 6/4/2013
Stopped 8/9/2013
PSA History
5.22 - 6/28/2011 (59 years old)
0.05 - 12/22/2011
0.05 - 3/25/2012
0.05 - 6/22/2012
0.06 - 10/13/2012
0.08 - 12/31/2012
0.11 - 3/30/2013
0.13 - 4/23/2013
0.02 - 8/6/2013
0.02 - 11/26/2013
<0.015 - 7/28/2014
<0.015 - 1/3/2015
<0.015 - 7/7/2015
0.02 - 1/15/2016
0.05 - 8/23/2016
0.07 - 2/21/2017
0.10 - 8/22/2017
0.13 - 12/29/2017
0.19 - 6/18/2018
0.26 - 10/15/2018
0.29 – 2/11/2019
0.41 - 5/20/2019
0.43 - 9/13/2019
Related Permanent Side Effects
Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)
ED - Prostate removal surgery (had to remove the left side nerve bundle)
Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex
Hyperhidrosis (excessive sweating every time performing very minor physical activity) - Hormone treatments of Lupron and/or Casodex.
Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation. Biopsy negative.
Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):
Artificial Sphincter Experiences
http://csn.cancer.org/comment/1324584#comment-1324584
http://csn.cancer.org/comment/1326323#comment-1326323
http://csn.cancer.org/comment/1339326#comment-1339326
http://csn.cancer.org/comment/1339561#comment-1339561
http://csn.cancer.org/comment/1344785#comment-1344785
http://csn.cancer.org/comment/1413239#comment-1413239
Hormone and Radiation Salvage Treatment Experiences
http://csn.cancer.org/comment/1414101#comment-1414101
http://csn.cancer.org/comment/1414282#comment-1414282
http://csn.cancer.org/node/299431
Why I joined and participate in this Forum:
I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers. Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.
I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others. I have freely shared my expereinces related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.
And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.
0 -
PSA threshold of 2.0 ng/ml
Josephg,
The threshold at 2.0 ng/ml as the trigger for your next treatment seems reasonable to me, in view of your clinical histology. I would consider PET instead of other image modalities when looking for the metastases as it permits detection at cellular level. The isotope for the test most recommended should incorporate the PSMA antibody which is specific to prostatic cells.
My PET experience with a PSA above 1.8 was a positive 18F-choline PET/CT scan (January 2018) followed with a negative 68Ga-PSMA PET/CT (February 2019). The 68Ga PET did not identify metastases allover including at the places that have been detected by the 18F PET. The results of this 68Ga PSMA scan were considered false negatives as the Gallium used in the test (excretes via the urine) blurred the whole area of the bladder making it impossible to detect or distinguish neoplasia at the prostate bed. The problem with the 68Ga image is that this picture is taken approximately one hour from the time of the injection of the positron emitting isotope 68Ga that by that time it is filling the whole bladder. Neoplasia in the prostate bed, which is also the common area recommended to be blindfold irradiated in salvage treatments, was detected in my 18F PET.
After investigation on the capabilities of the several PET scans, it seems to me that the 68Ga PSMA PET is more reliable than the 18F choline PET scan, but in localized metastases the 18F PSMA PET is superior and more reliable than to all others. Within the 18F PSMA ligands the one showing the best results today is the 18F PSMA-1007 available only in Germany. In the USA the most adequate is the 18F-DCFPyL followed by the 18F-DCFBC.
In this regard I would recommend you to discuss with your doctor to verify any possibility of including you in a clinical trial for PET scans using these isotopes. Here are links about the trials and the PET scans;https://www.cancer.gov/about-cancer/treatment/clinical-trials/intervention/fluorine-f-18-dcfpyl
https://clinicaltrials.gov/ct2/show/NCT01417182
https://www.ncbi.nlm.nih.gov/pubmed/28894899
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5747380/
https://pubs.rsna.org/doi/10.1148/radiol.2019190687
Thanks for the update.
VGama
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PET Scans
Thank you for your reply, Vasco. As always, your knowledge and perspective based upon your research and personal experiences is invaluable to all of us in this Forum.
Yes, my Oncologist was referring to PET scans, when my PSA approaches 2.0. At the appropriate time, I will discuss the different types of available PET scans, and I will request consideration for the one that seems to be delivering the best results for my individual case. I am being cared for by a world class cancer organization, so I am confident that they will have some of the latest isotopes available for use.
I will also look into the PET scan clinical trials that you have referred to, and I will discuss them with my Oncologist.
Thanks again, and I wish you the best of outcomes on your journey.
0 -
77 Month Checkup
Hi Folks,
I had my checkup and blood draw for the PSA test today, and my PSA is currently 0.46, and this is approximately 77 months after my 2nd and final Lupron shot (two 3-month dosages), and also my last salvage radiation treatment (38 visits, 68 Greys). This test represents the 10th detectible and rising PSA reading in a row, after 30 months of non-detectible readings following the hormone and salvage radiation treatments.
This is actually good news for me, as my PSA was 0.43 four months ago, and 0.41 four months before that. My Oncologist stated that my current PSA doubling time is approximately 30 months, which is a huge increase from my PSA doubling time 2 years ago. My Oncologist further advised me, as she does on every visit, that the rate of PSA increase varies, and while the rate of increase is currently slow (good), there is no guarantee that it will remain slow in the future. My next PSA test will be in 4 months.
But, for now, I will celebrate this good news with a glass or two of red wine tonight, and I ask you all to raise your glasses of your favorite beverage tonight, and celebrate with me.
Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.
Live life to its fullest, one day at a time.
Related History and Data:
Post-Robotic Prostate Removal Surgery Pathology Report
A. Lymph nodes, right pelvic: Two (2) lymph nodes; negative for metastasis.
B. Lymph nodes, left pelvic: Two (2) lymph nodes; negative for metastasis.
C. Prostate, radical resection:
1. Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.
2. No lymphatic/vascular invasion is present.
3. Perineural invasion is present.
4. Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).
5. The Seminal vesicles are free of carcinoma.
6. The inked margins are free of carcinoma.
7. High-grade PIN is present.
8. Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.
D. Left mid margin: Fibrovascular tissue; negative for tumor.
Diagnosis Comment: AJCC: pT3a NO
Robotic Prostate Removal Surgery
11/21/2011
AMS 800 Artificial Sphincter Implant Surgery
1/9/2013 - Original implant
9/28/2019 - Replacement implant (original implant failed, due to leakage)
Hormone Therapy (Lupron tri-monthly and Casodex daily)
Started 5/4/2013
Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)
Radiation Therapy (38 visits, 68 Grays)
Started 6/4/2013
Stopped 8/9/2013
PSA History
5.22 - 6/28/2011 (59 years old)
0.05 - 12/22/2011
0.05 - 3/25/2012
0.05 - 6/22/2012
0.06 - 10/13/2012
0.08 - 12/31/2012
0.11 - 3/30/2013
0.13 - 4/23/2013
0.02 - 8/6/2013
0.02 - 11/26/2013
<0.015 - 7/28/2014
<0.015 - 1/3/2015
<0.015 - 7/7/2015
0.02 - 1/15/2016
0.05 - 8/23/2016
0.07 - 2/21/2017
0.10 - 8/22/2017
0.13 - 12/29/2017
0.19 - 6/18/2018
0.26 - 10/15/2018
0.29 – 2/11/2019
0.41 - 5/20/2019
0.43 - 9/13/2019
0.60 - 1/17/2020
Related Permanent Side Effects
Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)
ED - Prostate removal surgery (had to remove the left side nerve bundle)
Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex
Hyperhidrosis (excessive sweating every time performing very minor physical activity) - Hormone treatments of Lupron and/or Casodex.
Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation. Biopsy negative.
Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):
Artificial Sphincter Experiences
http://csn.cancer.org/comment/1324584#comment-1324584
http://csn.cancer.org/comment/1326323#comment-1326323
http://csn.cancer.org/comment/1339326#comment-1339326
http://csn.cancer.org/comment/1339561#comment-1339561
http://csn.cancer.org/comment/1344785#comment-1344785
http://csn.cancer.org/comment/1413239#comment-1413239
Hormone and Radiation Salvage Treatment Experiences
http://csn.cancer.org/comment/1414101#comment-1414101
http://csn.cancer.org/comment/1414282#comment-1414282
http://csn.cancer.org/node/299431
Why I joined and participate in this Forum:
I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers. Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.
I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others. I have freely shared my experiences related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.
And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.
0 -
Plateaued PSA
J
Congratulations for the results. The trend seems to indicate that you will be on vacations for a long time. I will join you with a glass of red in the celebration.
Best
VG
0 -
VascodaGamaVascodaGama said:Awakening after a long slumber
The PSA increasing histology and the dates of last interventions (HT+RT) confirms the Awakening of the bandit. I wonder what his the opinion of your oncologist.
Though the PSA is very low, I think that recurrence is evident and that you are experiencing systemic disease. In such circumstances, the opinion of oncologists vary on procedures to follow, though the majority opt with palliative approaches. The only marker of disease progression to regulate interventions is the PSA but some wait for signals from arising symptoms. These could relate to pain, or an obvious physical change or other health deteriorations found via markers not related to the cancer.
Among the various palliative therapies, hormonal manipulations (ADT) are the most preferred and typical as systemic therapy. You have done it before so that you know what to expect from HT drugs. Another approach for systemic treatment is the so called oligometastatic treatment that involves finding the cancer hideaways with sophisticated contrast agents and then spot radiate those lesions. The cancer should be found at a fewer number places that can still absorb additional radiation (previous RT patients). Still another option is the newer stealthy attack named "radionuclide therapy" that deliver the missiles directly to the cancer wherever it hides. The one already showing positive results is Lu-177-PSMA-617. It identifies the cancer and kills it on the spot.
All the above approaches can be started at any time. Your oncologist request for six months may suggest that he is not worried by your PSA doubling (> 9 months is recommended). He has something in mind already.ADT can be planned for intermitent (IADT) administration in On/Off periods regulated via PSA thresholds (on/off switches). Each patient is different and each oncologist got their own thresholds. In my case (Gs6) the trigger to start an intervention was PSA = 1.0 ng/ml. The on-period protocol aimed to get me into castration with Eligard shots to attain a period of 12 months in remission levels (PSA<0.05 ng/ml). It took me 18 months under HT effects. The fabulous Dr. Myers considers remission at lower levels of PSA<0.01, reaching and keeping this level with several ADT blockades. The off-period means vacation from the drugs (no shots or other HT drugs). It starts once the remission period is accomplished and it last till the PSA reaches the next trigger threshold reserved by the oncologist for such particular patient. In my case it is PSA=2.5 ng/ml. I have been fortunate because the bandit allowed me already (+/-) 5 years without medication (free of meds side effects), however, the median period lengths in IADT is typically 2.5 to 3 years. Some patients prefer to extend this off-period and get higher levels of PSA as their trigger threshold, like: PSA= 5.0 or 10.0 or even higher at 20.0 ng/ml.
Each systemic case has its own particulars and some guys become refractory sooner than others. When the initial drugs fail oncologist change weapons and use second-line HT drugs. The immune system might be targeted to react/improve situations. Combination of medications becomes typical.
I would suggest you to investigate on systemic therapies to be prepared with inquires in your next consultation. You can read many of the threads in this forum for ideas;
https://csn.cancer.org/node/307512Best wishes,
VGama
Posts: 3077
Joined: Nov 2010Mar 04, 2017 - 7:38 amThe PSA increasing histology and the dates of last interventions (HT+RT) confirms the Awakening of the bandit. I wonder what his the opinion of your oncologist.
I am I negative Nellie mode here as I have my next test in a few weeks but need to get it out of my system...
Here it is suggested that these low level rises suggest recurrence but in my case it goes up and down and up at similar degrees of magnitude and up and I am told not to worry.
Are we just guessing at these low levels?
My experience, based on a cynical view of how rotten the almighty has treated me in general is that either my card is marked or it is just a lottery.
A slightly loaded H
0 -
PSA anxietyhewhositsoncushions said:VascodaGama
Posts: 3077
Joined: Nov 2010Mar 04, 2017 - 7:38 amThe PSA increasing histology and the dates of last interventions (HT+RT) confirms the Awakening of the bandit. I wonder what his the opinion of your oncologist.
I am I negative Nellie mode here as I have my next test in a few weeks but need to get it out of my system...
Here it is suggested that these low level rises suggest recurrence but in my case it goes up and down and up at similar degrees of magnitude and up and I am told not to worry.
Are we just guessing at these low levels?
My experience, based on a cynical view of how rotten the almighty has treated me in general is that either my card is marked or it is just a lottery.
A slightly loaded H
Cushions,
I think that you are inquiring about my opinion on Joseth situation and trying to adapt it to your case, but you shouldn't because each case got its own particulars.
Let us know about your next PSA and lets discuss the matter in your thread where you have described your history. I believe that you are experiencing a moment of anxiety as the timing for the PSA is approxing.
I wonder how could you insert my avatar in this post. How is it done?
0 -
Hi VVascodaGama said:PSA anxiety
Cushions,
I think that you are inquiring about my opinion on Joseth situation and trying to adapt it to your case, but you shouldn't because each case got its own particulars.
Let us know about your next PSA and lets discuss the matter in your thread where you have described your history. I believe that you are experiencing a moment of anxiety as the timing for the PSA is approxing.
I wonder how could you insert my avatar in this post. How is it done?
Hi V
You are correct - PSA anxiety for the win. I oscillate between indifference and disaster. Just got to get done and see what happens.
I did the reply on mobile and just cut and paste a chunk of your post including the avatar - wasn't expeting it but it seemed to work!
0 -
me tooVascodaGama said:Plateaued PSA
J
Congratulations for the results. The trend seems to indicate that you will be on vacations for a long time. I will join you with a glass of red in the celebration.
Best
VG
V,
I join in also, but with a can of Pabst Blue Ribbon beer ("PBR"). I hope it is available in Portugal; if not, order some !
0
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