Recently diagnosed with Gleason score of 9

SV · February 2020

Is this good news?

I've been on Lupron now for five weeks and had my PSA and testostereone tested yesterday:

1/7/20	2/14/20
Free PSA ng/mL		<0.005
FREE TOTAL PSA %
Total PSA <=3.101 ng/mL	1.950	0.180

This chart copied and pasted does not appear clear but basically my PSA 1/7/20 was 1.95 and now it is 0.18

VascodaGama · February 2020

Good news

SV,

The decrease of the PSA is good news. This value has a meaning but without the results of the testosterone I can't opinion. What is the value?

I also need to know the specifics of the shot. What was the dose of the Lupron administered 5 weeks ago? Was it one month shot?

The free PSA test is insignificant as a marker in a guy without the prostate gland. Why is your GP requesting this test?

Georges Calvez · February 2020

Five weeks in

Hi there,

Five weeks in and your testosterone should be subcastrate, it will be in 95% of men, your PSA is declining fast which is what a doctor would expect.
You are not below the limit of detection which some men hit very quickly but I would expect that you will hit this before the three month point.
Any idea how long you will be staying on the stuff?

Best wishes,

Georges

SV · February 2020

Thanks again guys

I had the blood test done last Friday afternoon and was able to read that PSA result online Saturday morning. Testosterone results take longer but I'm guessing that it's going to be low by now. The Lupron shot was the three-month type.

Still walking three miles a day but the last four days I've been passing a kidney stone, so significant pain comes and goes. ER Dr gave me some Percocet and said it will pass. He wanted to do a CAT scan but in the current situation I wanted to consult my oncologist first. Oncologist said radiation from another CAT scan was the least of my problems and to go ahead with it. Now I have to wait for the three-day holiday to end.

This last blood test was not ordered by doctors at City of Hope.

SV · February 2020

Georges Calvez said:
Five weeks in
Hi there,

Five weeks in and your testosterone should be subcastrate, it will be in 95% of men, your PSA is declining fast which is what a doctor would expect.
You are not below the limit of detection which some men hit very quickly but I would expect that you will hit this before the three month point.
Any idea how long you will be staying on the stuff?

Best wishes,

Georges

Unsure of time on Lupron

The oncology radiologist recommend two months of radiation followed by two years of Lupron. I think this is excessive and might agree to one more 90 shot.

SV · February 2020

Testosterone Results

I just now received testosteron blood test results online.

Testosterone, Free, S0.57 ng/dL

Testosterone, Total, S52 ng/dL

This was at the five week mark on Lupron--same date as the most recent PSA result listed above. Assuming this is good news?

VascodaGama · February 2020

Still some room left

SV,

This is a great decrease from 688 to 52 ng/dL, in just 5 weeks. It will decrease further to castration levels (Lower than 20) by the time you get the second shot. T=52 is the level investigators use in their clinical trials, but oncologists use lower levels in treatments. For those that use ADT as prime therapy (my case) the level must reach still lower (<10 ng/dL) to warrant a free period without drugs (intermittent approach). The decrease signifies that the existing cancerous cells are hormone dependent and would respond well to hormonal manipulations if ever you need to follow ADT. In my lay opinion this may signify that your cancer is not highly aggressive for a Gleason rate of 5.

The PSA accompanied the decrease of the testosterone and it will go down further which could justify a postponement of the radiation therapy if you decide to pursue ADT, continuing the hormonal shots. I understand your aversion for Lupron and your wish to diminish the two years period proposed at COH. I think that these results can be taken into consideration for them to limit the hormonal portion to a six month period. I hope you manage to convince them into an agreement.

Let us know the results from your next meeting at MD Anderson.

Best wishes

VG

SV · February 2020

VascodaGama said:
Still some room left
SV,

This is a great decrease from 688 to 52 ng/dL, in just 5 weeks. It will decrease further to castration levels (Lower than 20) by the time you get the second shot. T=52 is the level investigators use in their clinical trials, but oncologists use lower levels in treatments. For those that use ADT as prime therapy (my case) the level must reach still lower (<10 ng/dL) to warrant a free period without drugs (intermittent approach). The decrease signifies that the existing cancerous cells are hormone dependent and would respond well to hormonal manipulations if ever you need to follow ADT. In my lay opinion this may signify that your cancer is not highly aggressive for a Gleason rate of 5.

The PSA accompanied the decrease of the testosterone and it will go down further which could justify a postponement of the radiation therapy if you decide to pursue ADT, continuing the hormonal shots. I understand your aversion for Lupron and your wish to diminish the two years period proposed at COH. I think that these results can be taken into consideration for them to limit the hormonal portion to a six month period. I hope you manage to convince them into an agreement.

Let us know the results from your next meeting at MD Anderson.

Best wishes

VG

Thanks again amigo!

Just received a call from MD Anderson saying that they moved my appointment forward from March 20 to March 3. They requested that I stay out there 3-5 days for anticipated further testing. Great news!

Georges Calvez · February 2020

Less than 20 ng/dL
Hi there,

To me your testosterone sounds a bit higher than some urologists would like.
I would not be surprised if they give you a couple of shots of Firmagon when you get out there and then test you a few days later.
Firmagon causes a rapid crash in testosterone levels so you would go below 20ng/dL in a few days.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3668394/

Best wishes,

Georges

Gforce · February 2020

SV said:
Thanks again guys
I had the blood test done last Friday afternoon and was able to read that PSA result online Saturday morning. Testosterone results take longer but I'm guessing that it's going to be low by now. The Lupron shot was the three-month type.

Still walking three miles a day but the last four days I've been passing a kidney stone, so significant pain comes and goes. ER Dr gave me some Percocet and said it will pass. He wanted to do a CAT scan but in the current situation I wanted to consult my oncologist first. Oncologist said radiation from another CAT scan was the least of my problems and to go ahead with it. Now I have to wait for the three-day holiday to end.

This last blood test was not ordered by doctors at City of Hope.

I had a 3 mo shot of Lupron

I had a 3 mo shot of Lupron after my 1 mo shot. I have to say it was not as effective. My 3 month shot was given in the beginning of Nov 2019, and blood work was done end of Dec 2019. My T was up to 115 and PSA rose accordingly 5.2. In Jan 2020 I got a 1 mo shot of Trelstar and it crashed my PSA immediatley to 19 and PSA down to 3.5. My medical oncologist said the one month shot is more potent. I go in for my final shot on 2/26 and it will be a one month shot. I am now 22 days into 40 treatments of Proton and all is well.

SV · February 2020

New blood test results

Today marks six weeks on Lupron:

Testosterone, Total Serum20 ng/dL

Prostate Specific Antigen (Total), Blood0.076 ng/mL

Protein Total, Blood	6.7 g/dL	6.3 to 8.2 g/dL6.3 - 8.2 g/dL
Albumin Level, Blood	4.1 g/dL	3.5 to 5.0 g/dL3.5 - 5.0 g/dL
Calcium Level, Blood	9.9 mg/dL	8.6 to 10.2 mg/dL8.6 - 10.2 mg/dL
Bilirubin Total, Blood	0.4 mg/dl	0.2 to 1.3 mg/dl0.2 - 1.3 mg/dl
Alkaline Phosphatase Level, Blood	77 U/L	38 - 126 U/L38 - 126 U/L
SGPT (ALT)	19 U/L	7 to 56 U/L7 - 56 U/L
SGOT (AST)	18 U/L	15 to 46 U/L15 - 46 U/L
Sodium Level, Blood	140 mmol/L	137 to 145 mmol/L137 - 145 mmol/L
Potassium Level, Blood	4.9 mmol/L	3.5 to 5.1 mmol/L>3.5-<5.1 mmol/L
Chloride Level, Blood	102 mmol/L	98 to 107 mmol/L98 - 107 mmol/L
Carbon Dioxide Level, Blood	27 mmol/L	22 to 30 mmol/L22 - 30 mmol/L
Glucose Level (Random), Blood	102 mg/dL	80 to 128 mg/dL80 - 128 mg/dL
Blood Urea Nitrogen Level, Blood	43 mg/dL	7 to 25 mg/dL7 - 25 mg/dL
Creatinine Level, Blood	1.84 mg/dL	0.7 - 1.3 mg/dL0.7 - 1.3 mg/dL
eGFR Except African American	37 mL/min/1.73 sq M	>=60 mL/min/1.73 sq M>=60 mL/min/1.73 sq M
Results using the MDRD study equation have not been validated for use with patients under 18 and over 70 years of age, pregnant women, patients with serious comorbid conditions, or persons with extremes of body size, muscle mass, or nutritional status. Chronic Kidney Disease <60 mL/min/1.73sq M Kidney Failure <15 mL/min/1.73sq M
eGFR African American	45 mL/min/1.73 sq M	>=60 mL/min/1.73 sq M>=60 mL/min/1.73 sq M
Results using the MDRD study equation have not been validated for use with patients under 18 and over 70 years of age, pregnant women, patients with serious comorbid conditions, or persons with extremes of body size, muscle mass, or nutritional status. Chronic Kidney Disease <60 mL/min/1.73sq M Kidney Failure <15 mL/min/1.73sq M
Anion Gap, Blood	11	8 to 14 8 - 14
Albumin / Globulin Ratio	1.6	1.1 to 2.1 1.1 - 2.1

WBC	6.3 K/uL	3.6 to 10.1 K/uL3.6 - 10.1 K/uL
RBC Count	4.41 M/uL	4.01 to 5.29 M/uL4.01 - 5.29 M/uL
Hemoglobin, Whole Blood	14.1 g/dL	12.8 to 16.1 g/dL12.8 - 16.1 g/dL
Hematocrit, Whole Blood	42.4 %	37.6 to 47.2 %37.6 - 47.2 %
Platelet Count	236 K/uL	150 to 350 K/uL150 - 350 K/uL
MCV	96.2 fL	83.3 to 97.0 fL83.3 - 97.0 fL
MCH	32.1 pG	27.4 to 33.0 pG27.4 - 33.0 pG
MCHC	33.4 G/dL	32.8 to 35.0 G/dL32.8 - 35.0 G/dL
RDW	14.1 %	12.5 to 15.0 %12.5 - 15.0 %
MPV	7.5 fL	7.1 to 11.2 fL7.1 - 11.2 fL

Segmented Neutrophil	64.8 %	42.5 to 78.2 %42.5 - 78.2 %
Lymphocyte	24.7 %	11.9 to 46.0 %11.9 - 46.0 %
Monocyte	7.1 %	5.0 to 15.3 %5.0 - 15.3 %
Eosinophil	2.6 %	0.7 to 7.2 %0.7 - 7.2 %
Basophil	0.8 %	0.2 to 1.6 %0.2 - 1.6 %
Segmented Neutrophil Absolute	4.0 K/uL	1.9 to 6.0 K/uL1.9 - 6.0 K/uL
Lymphocyte Absolute	1.5 K/uL	0.5 to 3.3 K/uL0.5 - 3.3 K/uL
Monocyte Absolute	0.4 K/uL	0.3 to 0.9 K/uL0.3 - 0.9 K/uL
Eosinophil Absolute	0.2 K/uL	<=0.6 K/uL<=0.6 K/uL
Basophil Absolute	0.0 K/uL	<=0.1 K/uL<=0.1 K/uL

What does this all mean?

Georges Calvez · February 2020

C'est bien

Hi there,

That is good, your testosterone is now in the range that PCa specialists like and your PSA is continuing to fall, give it another month or so and you should be below the level of detection.
Interestingly your blood urea and eGFR are out of the normal range, you can ask your doctors about this when you see them.
They love intelligent probing questions! :-)

Best wishes,

Georges

VascodaGama · February 2020

Risk for CKD

Amigo SV,

Georges is right, you need to consult a nephrologist as the parameters regarding the kidneys are all out of the normal range. I am not a doctor but the results above are indicative of a possible case of chronic kidney disease CKD.
Back in 2017, I was caught with CKD stage 3 (Stage 4 requires dialyses) for the results of eGFR= 39.2 (yours is worse at 37 mL/min/1.73 sq M), Creatinine =1.65 (yours is worse at 1.84 mg/dL) and Blood Urea Nitrogen = 24.3 (yours is worse at 43 mg/dL). Other influential data regards Albumin and the items of an Ionogram. My kidneys work at 40%. A level of 35% is critical and with 30% I would need dialyses. CKD prohibits the use of contrast agents in CT scans. You should inform about your creatinine level to the radiologist.
To confirm your above situation you will have to test the urine of 24 Hours. Get informed and see a doctor.

In accordance with my nephrologist, the cause for my CKD was uncontrolled HBP and the hormonal imbalance when on ADT. He said that my diet seem OK. The problem is that I can't retrocede the situation but I can control it from further deterioration via a controlled blood pressure and diet. You can read my story in this link;

https://csn.cancer.org/node/307433

Best wishes,

VGama

SV · March 2020

test

test

VascodaGama · March 2020

A warning sign of kidney disease

SV,

I received by mail the test results that you may have wanted to post above. Some of the values related to kidney function are slightly different from the previous tests of Feb 26, but the new ones also indicate problems in kidneys' function. In fact they write that you got stage 3 for the eGFR-AA= 61mL/min/1.73 sq. m, and eGFR-NAA= 53 mL/min/1.73 sq.m.

In your shoes I would get the filtration rate from a 24 hours urine sample. The calculation of the ratio would provide a more reliable result. I am surprised that the nephrologist you consulted in California did not suggest that test in view of your probably involvement with nephrotoxic substances required in PCa matters. The BUN of 33 mg/dL is again high (normal range is 6 to 23 mg/dL) but the ionogram items are stable. As commented before, I advise you to inform the doctors attending you about your creatinine and eGFR results. I wonder about your blood pressure. Are you testing it?

The good news from the tests is the lower PSA now at 0.1 ng/ml, and the testosterone that reached chemical castration of <33 ng/dL. Thought your cholesterol is very high at 248 mg/dL. You may try to improve it via a fitness program or take pills.

Please read these;

https://www.ncbi.nlm.nih.gov/pubmed/19368492

https://www.healthline.com/health/kidney-function-tests

Regarding the proposed two months of Proton at MDA, I think it to be a valid salvage therapy. Surely the guys at Loma Linda also have years of experience in radiation therapy for prostate cancer. MDA may require you to travel everyday however the best is to choose the one that gives you more confidence. Get the opinion of your family.

Please note that I am not a doctor. You should get advice and second opinions from professionals.

Best wishes,

VGama

SV · April 2020

Got my latest bloodwork back after 3 months of Lupron

Testosterone, Total Serum

9 ng/dL

87 to 780 ng/dL87 - 780 ng/dL

Prostate Specific Antigen (Total), Blood

<0.008 ng/mL

<=3.1 ng/mL<=3.1 ng/mL

SV · April 2020

Treatment recommendations

After consulting doctors at City of Hope, MD Anderson Cancer Center, Loma Linda Mayo Clinic, and California Proton Center, all agreed that radiation was my only option. But they varied in approach. Here are the recommendations without naming the hospital.

1. Two months of Proton five-days a week nuking the right seminal vesicle and prostate bed with a total of one year on Lupron. (Four 90-day shots total) When I balked at more Lupron the RO said ok but then we must add daily Casodex, which I have been on for the last month with zero change in side effects ... which were almost zero from the Lupron. While I was there they performed extensive bloodwork, two followup MRIs for suspicious spots revealed on my PET Scan and genetic testing on my original prostate gland removed in 2010. California law says they must keep it for 15 years. They were incredibly thorough.

2. Two months of Proton nuking the right seminal vesicle and prostate bed with a total of six-months of Lupron (two 90-day shots) But they have a 40 year old proton machine without the latest Pencil Beam technology. A very well known RO reviewed previous test results for our TeleMed phone call. Excellent doctor.

3. Two years of Lupron with two months of Photon radiation nuking the right seminal vesicles and prostate bed. This team really dropped the ball in several critical areas by misreading my post-op biopsy Gleason score which was a 4+3=7 instead of the original pre-op Gleason 4+5=9. They never took the time to read my entire file before recommending treatment--not once but three different times in subsequent visits. Upon realizing their error they apologized profusly and said "OK let's change that to six months of Lupron." Unbelievably incompent doctors.

4. Ten days of intense Photon radiation on the right seminal vesicle only without radiating the prostate bed...But two years of Lupron to take care of any microtumors or rogue cells.

5. Two months of Proton with six months of Lupron from internationaly reknown RO (total of two ninety-day shots) In all cases Medicare covered 80% and Blue Cross supplement PPO covered the the other 20%.

Obviouosly this was quite a dilemma so I arrived at a decision by process of elimination.

eonore · April 2020

Prostate bed versus radiating whole pelvic area

Have any of the ROs you have consulted with discussed radiating the entire pelvis rather than just the prostate bed. Here is a link to an article on this subject. https://www.ascopost.com/issues/november-25-2018/adding-pelvic-node-radiation-and-hormone-therapy-to-radiation-provides-significant-benefit-in-prostate-ca/

Eric

VascodaGama · April 2020

Chemical castration

T=9ng/dL means you are in chemical castration. Congratulations.

It also means that the cancer is hormone dependent which could represent a long period of control on the advancement of the disease. Surely you have plenty of time to research on the details of the treatments and chose the one giving you the highest confidence.

You are an experienced adventure and you may take this as another of your journeys.

Best wishes.

VG

SV · April 2020

eonore said:
Prostate bed versus radiating whole pelvic area
Have any of the ROs you have consulted with discussed radiating the entire pelvis rather than just the prostate bed. Here is a link to an article on this subject. https://www.ascopost.com/issues/november-25-2018/adding-pelvic-node-radiation-and-hormone-therapy-to-radiation-provides-significant-benefit-in-prostate-ca/

Eric

Interesting article. Thanks

Interesting article. Thanks amigo.

Recently diagnosed with Gleason score of 9

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