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Josephg
Posts: 165
Joined: Jan 2013

Hi Folks,

 

I just received my PSA test result, and I wanted to share it with you.

The timing of this test is approximately 36 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last radiation treatment (38 visits, 68 Greys). 

The result for PSA was 0.05, the first detectible reading after 30 months of non-detectible readings.  I also have a new Oncologist at the same Institution, as my original Oncologist left to pursure a pure research career.  My new Oncologist, who has 20+ years in her role, stated that she is not concerned about my latest PSA reading.  However, now that I am over my initial surprise, I will be having a follow-up conversation with her to discuss this latest result in greater detail. 

While I recognize that I have only traveled only 6 more months down this long road, this is the first speed bump that I've encountered after my salvage treatment.  Perhaps, it is a message from the bandit currently holed up in some remote part of my body, hiding, but growing impatient. 

I do recognize that a PSA reading of 0.05 is really low, and I've been more fortunate to date, than a lot of my brothers in this forum with PCa. 

My next PSA test and Oncologist visit is scheduled for 6 months from now.

 

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

 

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

 

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

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

now

always glad to read about good results

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

I agree. We and you should be toasting.

Regarding your worries with the Lupron effects (which I think it representing your big BUT...), I would get a testosterone test to verify any case of hypogonadism. Low levels of the stuff in circulation would have an effect on the prostatic cells (if existent) or a cause in higher levels of estrogens (female hormones) which could be behind your gynecomastia case. I wonder if your doctor is suspiscious of breast cancer.

Best wishes for continuing remission.

Lets drink a glass of Poirtuguese Esporao red.

VG  

Will Doran
Posts: 207
Joined: Sep 2015

Josephg,

Congratulations.  My you continue to have these good results. 

I know where you are coming from, and understand completely.  I had a PSA of 69.  Robotic Surgery. 40% of Prostate involved. Gleason of 7, and one lymph node with a very small spot that didnt' even show up on my MRIs. Listed as a high, agressive Stage 3 or Early Stage 4.  I was treated as if I was an advanced Stage 4.   I went through 40 post surgery Radiation Treatments, and have been on Lupron for two years.    My PSA went to <0.010 two months post surgery, and has stayed there for two years.  I am now on my last Lupron shot and we hope I can stay off of the Lupron.  All my blood tests and MRIs come back clean.  The side effects from the Lupron are ugly at times, I know.  Hang in there.

So, I know how you feel.  Congratulations and, Yes, celebrate every day.

Best Wishes

Peace and God Bless

Will

Josephg
Posts: 165
Joined: Jan 2013

Hi Folks,

I had my mammogram this week, and the results are that I have benign gynecomastia in my right breast, a condition usually resulting from a hormone imbalance in the body.  In my case, this is attributed to the Lupron and Casodex hormone therapy that I received in conjunction with my radiation treatments.

So, I'm still in a very good place overall, and I will have a glass or three of red wine this evening and enjoy life until my next checkup in six months.  Please join me in a toast to best wishes on all of our journeys.

Will Doran
Posts: 207
Joined: Sep 2015

Josephg,

Since I replied to you, I just had my yearly checkup at Radiation Oncology, last week.  The PA who sees me at this point, did a complete exam, including a DRE and she also checked my brests for lumps.  My PSA is still at <0.010, 2 years post surgery, after 2 years on Lupron and 8 weeks of radiation.  Angie (the PA) said that if at some time I had any tenderness from being on Lupron for 2 years, that they can and would do a few radiation treatments to shrink the swelling and relieve any tenderness. She told me they would do a mamogram if I had concerns. I haven't had any problem to this point.  I have my 4 month checkup with my Urologist / Surgeon on Monday (2/8), we will discuss my future plans.  I will mention these treatments to him.  At this point, however, Dr. Miller does not want me having any CT Scans or Radiation because of all the pre surgery testing that was done, and the 8 weeks of radiation that I had 1 1/2 years ago.  He will only approve using MRI's for check ups.  I will have a Bone Scan on Friday of next week (2/12). I guess that isnt' radiation, because the operator sits right beside me as she is running the scans.  I'll ask Dr. Miller that on Monday.  My chest has gained size, but most of that is becasue I'm working out at the gym two days per week on weight machines and I do free weights at home every day I'm not at the gym.  So, even while being on the Lupron, I am actually building, muscle.  I have had what is to be my last Lupron shot.  As of next week I will be off Lupron and we will check  my PSA in June with the hopes that the PSA stays at "0". So, at this point, I shouldn't have a tenderness problem since the Lupron will start to wear off over the next 12 months, so I understand.

So, Chances are that what your doctor has said is what is happening.  The tenderness and thickning in you breast is from the Lupron.  My doctors have checked me every time I'm in for a check up for the same side effect from the Lupron.

Good Luck, Take Care and keep up the fight.

Peace and God Bless

Will

Josephg
Posts: 165
Joined: Jan 2013

Thank you for your perspective, Will.

Staying the course, checking our bearings, every 6 months.......

Josephg
Posts: 165
Joined: Jan 2013

Hi Folks,

I just received my PSA test result, and I wanted to share it with you.

The timing of this test is approximately 36 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last radiation treatment (38 visits, 68 Greys). 

The result for PSA was 0.05, the first detectible reading after 30 months of non-detectible readings.  I also have a new Oncologist at the same Institution, as my original Oncologist left to pursure a pure research career.  My new Oncologist, who has 20+ years in her role, stated that she is not concerned about my latest PSA reading.  However, now that I am over my initial surprise, I will be having a follow-up conversation with her to discuss this latest result in greater detail. 

While I recognize that I have only traveled only 6 more months down this long road, this is the first speed bump that I've encountered after my salvage treatment.  Perhaps, it is a message from the bandit currently holed up in some remote part of my body, hiding, but growing impatient. 

I do recognize that a PSA reading of 0.05 is really low, and I've been more fortunate to date, than a lot of my brothers in this forum with PCa. 

My next PSA test and Oncologist visit is scheduled for 6 months from now.

 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

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

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

Steve1961
Posts: 250
Joined: Dec 2017

hello sorry for all the complications but congrats on doing well...I am just wondering a few things if i may ..seems like your PSA was well under 10 and it seems like it only was occupying 15% of the prostrate ..I not sure how many tumors were present ..from what I understand Gleason 4-3 maybe more aggressive than 3-4 ...sorry but hearing your story a RP I thought would have taken care of it all....sorry I was just diagnosed myself and am trying to figure out my best treatment ..thanks ohh I am 57. 5.0 PSA for 6 years with 2+neg biopsies now after 26 months no testing like a fool I have8.1 PSA 3 pos core 2 of them 3-4 1 3-3 ..2 urologists and 1 radiation guy all sa to take it out and they think I will be ok ....but after reading all this great info ..I wonder..any siggedtions thsnks ..I guess the t3 mri I will be getting in 2 weeks will tell the tale....waiting is soo awful ..god bless u and keep up the good work 

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Thanks for sharing your results. The PSA is still in remission levels. Some variations can exist due to assay's tolerances, that could be as high as 0.02, or even wider if the last assay is from a different supplier.

Best wishes for continued remission.

VG

Will Doran
Posts: 207
Joined: Sep 2015

Josephg,

Sounds like you are hanging in there.  Congratulations.

I have now passed three years from diagnosis.  I just had my complete blood work done last week, and will go for my 4 month checkup at Urology on Tuesday (9/6).  They had my Testosterone knocked down to 17, with normal being between 250 - 1,100. I was on Lupron for 2 years and had 8 weeks of Radiation.   4 months ago my testosterone had come back up to 134, and my PSA was still at <0.010.  This past week my Testosterone is up into the normal range, but still low.  I'm now at 320.  With the rise in Testosterone, my PSA has come up to 0.035.  My doctor told me this would probably happen, but I think I'm still considered undetectable.  I understand that as long as the PSA stays under 0.2, there isn't much concern.

Best wishes for your continued sucess and remission.

Peace and God Bless

Will

Josephg
Posts: 165
Joined: Jan 2013

Hi Folks,

I just received my PSA test result, and I wanted to share it with you.

The timing of this test is approximately 42 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last salvage radiation treatment (38 visits, 68 Greys). 

The result for PSA was 0.07, the second detectible reading in a row, after 30 months of non-detectible readings.  This also corresponds to the second straight rise in my PSA, although a 0.02 rise over 6 months is not really that large.  My Oncologist does not appear to be overly concerned at this point, and has recommended that I stay the course, and we will review the results of my next PSA test.  My next PSA test and Oncologist visit is scheduled for 6 months from now.

Perhaps, it is a message from the bandit currently holed up in some remote part of my body, that it is awakening after a long slumber.   Like the bear coming out of hibernation, it may be hungry for "T".

 

 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

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

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

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

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/307512

Best wishes,

VGama

 

Josephg
Posts: 165
Joined: Jan 2013

Thank you for your perspective and suggestions, Vasco.

As always, your feedback is both educational and thought provoking, and shows that there is always a choice of paths going forward on the joruney.  I will definitely factor your suggestions into my next conversation with my Oncologist.

Thanks again.

Josephg

Josephg
Posts: 165
Joined: Jan 2013

 

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 48 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 42 months after my last salvage radiation treatment (38 visits, 68 Greys). 

The result for this PSA test was 0.10, the third detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation treatment.  This also corresponds to the third straight rise in my PSA, although a 0.03 rise over 6 months is not really that large.  My Oncologist stated that she is becoming concerned at this point, as the three straight rises in the PSA level is indicative that the bandit is awake and beginning to grow again.  She has recommended that we shorten the interval for the next PSA test to 4 months, and we will review the results of that PSA test in December.  She further stated that she expects that we will see a 4th straight rise, and at that point, she will recommend a series of tests, to see if we can find the location of the bandit.

My Oncologist does not want to wait until the PSA rises to the commonly accepted 0.20 threshhold to declare a treatment failure, but instead prefers that we remain as aggressive as possible in fighting the bandit for as long as we can, before turning to palliative treatments as a last resort.  She forewarned me that the chances of actually finding the bandit are small, due to its current presumably small size, but if we can find it, we potentially have the opportunity, depending upon where it is located, to attack it again with radiation, with the hope of killing it.  Her belief is that the bandit's most likely location is still in the area around the prostate bed, possibly in an area not contained within the path of the previous radiation treatment protocol.

If tests are ordered, the first test will be a T3 fossa MRI, followed by a bone scan.  Depending upon the results of these two tests, she may recommend a third test, an Axumin PET scan.  If the bandit is located by these tests, we will attack it with radiation, if possible.  If the bandit cannot be located by any of these tests, my Oncologist will recommend that I start internittent palliative Lupron treatments, shortly thereafter.

While this is not the direction of outcomes that I have been hoping for, I have lead a reasonable 6+ years since the original discovery of my PCa.  And while, I have encountered just about every negative side effect that can be experienced from all of my treatments, so far, I have maintained a good quality of life, and I have no regrets over my decisions regarding the course of my treatments to date.  I have been advised that even with the worst of outcomes regarding the planned tests and the commencement of palliative treatments going forward, I am likely to still be around in 10+ years.

As it is for all of us, I will continue to take one day at a time on this long journey.  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

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

Josephg
Posts: 165
Joined: Jan 2013

Hi Vasco and Folks,

I'm asking for any input and/or perspective that you may want to offer, regarding my latest test results and the recommended treatmant plan going forward.  It is always good to have lots of input before committing to a treatment plan, and I very highly value the input and perspective offered in the fourm by my fellow PCa survivors.

Any input and or perspective offered will be very greatly appreciated.

Thank you.

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Josephg

I have not much more to add to my above last post. The PSA this time shows to continue its upward trend confirming recurrence and systemic disease. You need to decide in one of the next steps: 1) try a possibility into cure with the oligometastatic treatment approach, or 2) try controlling the advancement of the bandit with a palliative protocol approach.

The oligometastatic treatment will require you the nerve of waiting to let the cancer grown to a level that it will permit to locate it with an image study. Some guys do this treatment with negative scans (false negatives) guessing the location of the cancer to incorporate it in the spot radiation, just like the salvage RT you have done. It can hit the bandit but it can miss it again leaving you untreated but with the higher risks and side effects.

From my researches a positive scan (true positive) got more assurances of detection if one uses the following PSA thresholds, depending on the exam of choice: PET-PSMA = 0.6 ng/ml, PET-F18 Flurocholine = 1.8 ng/ml, PET- F18 (Axumin) = 2.0, MRI-Feraheme = 2.5, MRI-C11/F18 = 2.5, MRI-Ga = 10.0, CT = 20.0, Bone scan = 30.0. These thresholds are averages from data I have been collecting in the past 5 years from several sources, for my own oligometastatic treatment.

In any case, this period of waiting for the increase of the PSA should be carefully decided to fit the trigger threshold of the treatment defined by the oncologist. For instance, in my case with Gs6, failed RP plus failed SRT, and on intermittent HT protocol (IADT), the PSA for the scan cannot be higher than 2.5 ng/ml because this is the trigger threshold for my continuing IADT treatment. I will restart ADT with leuprolide so that I have to do the scan before the shot.

In regards to the palliative hormonal treatment, you know the story already. I recommend you to follow a protocol involving intermittent modalities. In my case this is regulated with the PSA and testosterone (T) markers that serve as on/off switches. You should have these tests done before any HT drugs, and follow with 3-months periodicals.

Some systemic guys with aggressive cancers and/or bone metastases are recommended to chemotherapy (or combined chemo plus HT). Chemotherapy rarely provides cure but it manages to kill some cells which is reflected in a lower PSA (a real value). Hormonal approaches manage to turn the cancer sort of indolent so that the PSA decreases but this is a masked level. Once the effect of such a treatment vanishes, the PSA starts to increase. Recurrences in chemo-patient cases would be more difficult to treat as these are expected to be from very aggressive type of cells.

 

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

Surely you can expect answers from me on your inquires but you should listen to your physicians and follow your instinct. You can also discuss my opinions with your oncologist in regards to her choice of protocol. You need to use diplomacy when talking with her.

Best wishes.

VGama

 

GeorgeG
Posts: 127
Joined: May 2017

As usual VG has a lot of good data so I won't repeat it here. The trick on this is that in the early part of the rising PSA, detecting on imaging is not likely as described here but eventually the odds of survival or significant delay get worse with this increasing PSA. I failed after RP and the MSK charts as well as doctor input described probabilities of cure dropping below 50% as I was exceeding 0.5 PSA. My scans were negative as VG's data would suggest. I did opt for an advanced MRI of the prostate bed but it also did not show anything. I opted for SRT as my PSA was approaching 1.0 based on statistics (Johns Hopkins and Mayo both recommend this, with ADT) but then we had to shoot in the dark so to speak. They base the field and strength based on historical data regarding recurrance and my specifics from the RP pathology as well as the outcome of having done so vs doing nothing or waiting. It sure would have been nice to verify first with imaging and I considered waiting but opted for SRT. There is a similar program post RP for high risk guys such as Gleason 8+ and/or positive margins soon after surgery where there is usually no imaging verification either - adjuvant radiation. A question that is difficult to answer even when you study the data is if there is a sutvival benefit to intervention at this point or does the data about rising PSA merely describe your odds regardless of what you do. Thats not a pleasant thing to consider but especially beore the modern PSA era intervention did not change the outcome much for the large numbers. My sense is that we are getting better at choosing when and how so that treatments have been starting to move the needle with regards to mortality outcome. In the end, we should pick great doctors and consider their recommendations strongly but then you have to decide if you are a wait and see guy, a go at it strong kinda guy. I always play the movie the forward and think through how I would feel if I took action and then was right or wrong and then if I took no action and was right or was wrong. That helps me know what to do.

Best of luck for you.

George

Josephg
Posts: 165
Joined: Jan 2013

Thank you for your input and perspectives, Vasco and George.  Very much appreciated.

This gives me additional data points to consider, when deciding on my next course of actions, regarding my specific case.  When considering treatment options/alternatives, it is important to have a solid mix of both medical professional opinions/recommendations and personal experiences and perspectives from PCa survivors, before making a final decision.

Obtaining this valuable PCa survivor input is one of most important insights gained by participating in this forum.

Thanks again, and I wish you all continued success on your journeys.

Josephg
Posts: 165
Joined: Jan 2013

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 52 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 46 months after my last salvage radiation treatment (38 visits, 68 Greys). 

The result for this PSA test was 0.13, the fourth detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation treatment.  This also corresponds to the fourth straight rise in my PSA, although I am advised that a 0.03 rise over 4 months is not really that large.  My Oncologist stated that in her opinion, she's ready to declare that the previous surgery and salvage radiations treatments failed to kill all of the cancer cells; however, she wants to observe the PSA results in another 4-5 months, and see how much further it rises.  She further stated that the current rate of rise is slow-to-moderate in general terms, but in order to determine the doubling rate with any degree of reliability, she wants to evaluate 3 or more successive PSA rises over an initial threshold of 0.10.

My Oncologist further advised me that the institute is running a trial for a vaccination that, if the outcome is successful, will slow the growth of the cancer, and it could potentially add another weapon to the palliative treatment arsenal.  This treatment could potentially be used before placing a patient on palliative hormone treatments.  For me, this trial is not an option at this time, as the minimum required PSA level to quality for this trial is 0.80.  But, just the thought that there may be an additional weapon available in the palliative treatment arsenal is very encouraging.

As it is for all of us, I will continue to take one day at a time on this long journey.  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

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

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Enjoy the holiday season. The PSA is still very low. Your oncologist is doing well in waiting for additional values.

Best wishes for 2018.

VG

Josephg
Posts: 165
Joined: Jan 2013

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

http://csn.cancer.org/comment/1414282#comment-1414282

http://csn.cancer.org/node/299431

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

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;

https://clinicaltrials.gov/ct2/results?cond=Prostate+Cancer+Recurrent&term=&cntry=US&state=&city=&dist=

Best wishes in your continuing journey.

VGama

Josephg
Posts: 165
Joined: Jan 2013

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.

Josephg
Posts: 165
Joined: Jan 2013

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

http://csn.cancer.org/comment/1414282#comment-1414282

http://csn.cancer.org/node/299431

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

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

Josephg
Posts: 165
Joined: Jan 2013

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

 

 

 

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Joseph

Really sorry to hear this. I hope you have success getting on a trial.

H

Georges Calvez
Posts: 297
Joined: Sep 2018

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,

Georges

Josephg
Posts: 165
Joined: Jan 2013

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.

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

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

Josephg
Posts: 165
Joined: Jan 2013

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.

Josephg
Posts: 165
Joined: Jan 2013

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.

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

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

 

 

Josephg
Posts: 165
Joined: Jan 2013

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.

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