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Recently diagnosed with Gleason score of 9

SV
Posts: 119
Joined: Sep 2010

My biopsy last week revealed a few fives and sixes but the ugliest was a score of 9. The strange thing though is my PSA score of 5 about six months ago. Because of the high Gleason score, my urologist suggested the DaVinci surgery and a second opinion. After numerous recommendations and a consultation with Dr. Kawachi at City of Hope we agreed to his soonest surgery date of October 28 2010. When asking him about diets and so forth, along with the suggestions of garlic, tofu, cooked tomatoes, yogurt and so forth, the seemed to emphasize staying slim and active.

I am 58 year old recently retired competing athlete so I am in great physical shape and well aware of the powers of positive thought. Something else interesting is Dr Kawachi pointing to my girlfriend and saying that she is my best weapon. There is no disagreement there as she has not flinched for one second when it came to standing by my side to beat this disease. She also subscribes to the notion, if you can believe it, you can achieve it.

So far, I only know of the horror stories posted on the internet regarding the outcome of Gleason 9 cases and how there is not much to look forward to after surgery. It is my belief that in due time, I will return to a fully functioning man only minus semen. Is there any positive stories out there to support this possibility?

SV
Posts: 119
Joined: Sep 2010

Thanks amigo. I followed all of your dietary advice except for the Brussel Sprouts. Yuk. So far finished 21 Proton treatments out of 35 and feel pretty good because of the continuous exercise and spectacular environment here in the mountains. Okay...well maybe a little fatigue.

I've decided that I won't do any more Lupron shots or Casodex when those pills run out in mid-July. I was tenatively scheduled for another 90-day Lupron shot July 14 but since half of the doctors consulted said the first two 90-day Lupron shots should be enough I will follow their advice...instead of the advice of doctors who advised -2 years total.

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

I agree with your decision. In SRT most of the urologists request two years on ADT for Gleason 9 guys but medical oncologists recommends 6 to 12 months only. We have discussed this in previous posts above. The aim of ADT is to sensitize PCa cells to increase the benefits of the RT. Cells die while on their life cycle so that after RT the beneficiary period would last to a maximum of 4 months. After that the effect of the RT in PCa cells is nil. Continuing ADT would just mask the living cells. PCa would become dormant for a period until refractory but it wouldn't kill the bandit.

Best,

VG 

SV
Posts: 119
Joined: Sep 2010

I have felt some fatigue recently and the doctor said that was my body struggling hard to recover from the daily radiation treatments. This made me wonder if given that I have almost zero testosterone to expedite normal cell reproduction, should I temporarily train at half intensity? Wouldn't it be better to focus the bodies healing energies on good cells that were just radiated?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3579
Joined: May 2012

SV,

I'm sure everyone accepts the importance of good attitude, but I would question to what extent someone can "focus the body's energies," one way or another.   Radiation causes fatigue, sickness (cancer) causes fatigue, low T causes fatigue, and age causes fatigue.  Add all together, and you've got a pretty strong receipt for serious fatigue.    

I'd actually just rest.  When I had advanced lymphoma years ago, the six months of chemo had me often sleeping 14 or more hours a day, some days as many as 17 hours.   It was a natural effect.   Wait till after RT ends to train for the Summer Games is my suggestion.

 

Georges Calvez
Posts: 493
Joined: Sep 2018

Hi there,

I used to take walks of several kilometres a day when I was having radiation. I was on two high protein meals a day as well. This seems to be a French peculiarity. I was supposed not to eat things that would tend to result in intestinal gas or soft stools as well.
If you start to feel tired then do less exercise.

Best wishes,

Georges

Josephg
Posts: 256
Joined: Jan 2013

I was profoundly tired, a few weeks into my radiation and hormone treatments.  However, I went out of my way not to allow my tiredness to interfere with my normal daily routines.  My daily routine did include exercise on a treadmill.  I did not push myself beyond a safe level of exercise, but I did fight the urge to say, 'I'm tired', and stop or dramatically reduce my activities.

Each person must find and choose their own path in these areas.

SV
Posts: 119
Joined: Sep 2010

Thanks for the info guys. Yesterday was the last of 35 Proton radiation treatments...whew! It was a strange feeling walking out of the center for hopefully the last time. For the last two months my gal and I had focussed our lives around making to those 35 appointments and of course that dreaded balloon.

When asking the Doc about recurrence he frankly stated 40% likely to return for most men. But given my good health, physical fitness, diet, yoga, excercise and environment in this cedar forest I could expect a better outcome. My supply of Casodex runs out next week and I've opted to forego anymore Lupron. (did a total of six months)

Now we wait for the PSA test in two months...

What do you guys think?

Georges Calvez
Posts: 493
Joined: Sep 2018

Hi there,

Yes, it looks good. You just have to wait and see.
The 40% covers a lot of cases from the quite risky to the pretty safe.
You just have to look at it as an adventure, I do.
Remember no one here gets out alive.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

Congratulations. Time for the drink you like best.

You can start checking the PSA in two months but it will be more reliable in four months when the effects of the hormonal component wear off. The decline nadir from that point on, if any, should be reached at about one year post the end of the last RT section.

Wishing your next announcement of remission.

Best,

VG   

SV
Posts: 119
Joined: Sep 2010

The end of my second 90-day Lupron shot is July 14 so I was expecting the minimal side effects I've encountered so far too subside. However the joint pain has increased substantially along with the sporadic disorientation. How does the Lupron shot work? Is it time released so that it is full strength up to the last day?

Georges Calvez
Posts: 493
Joined: Sep 2018

Hi there,

Yes it is time released and the three months is the end of the totally effective range, however the drug continues to be released at a declining level for several more months.
It is futher complicated by the fact that the action of the drug is not direct.
After the first injection you go into a stage where the level of testosterone declines quite quickly, after a month most men will have a level of testosterone less than the limit of detection or very close to it.
This is maintained as long as the injections are continued.
When you stop the effects of the drug gradually wear off, after a month or two the testicles start to make testosterone again, this production gradually increases until after six months to a year it has returned to a stable level.
Gradually the hot flushes, joint pains, etc fade away and your physical sexuality, etc returns.

Best wishes,

Georges

SV
Posts: 119
Joined: Sep 2010

Does anyone know what the difference is between using Lupron for a year or Casodex? Why the push for Lupron?

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

Amigo SV,

The push for Lupron in any PCa radiation treatment, using it in combination with the prime therapy, comes out from the results of clinical trials, approval by the NFA and recommendations by the NCCN guidelines. Casodex has also been studied in combination treatments of HT plus RT but it seems that it doesn’t achieve the same outcome as that of Lupron in regards to treatment benefits. Casodex is better to Lupron in terms of quality of life as it causes milder symptoms to patients.

One should quote that Lupron and Casodex are two different drugs. Thought their goal in the treatment is the same, they work at different fronts leading to different symptoms and risks. Lupron works at the pituitary gland to chock the brain’s signaling process so that the testis will stop production of testosterone. Casodex works at cell’s receptors (the whole body) stacking these to avoid the absorption of androgens (testosterone and other androgens).

Both drugs have risks involved that will affect other body functions which can lead to permanent consequences. Lupron is associated with bleared vision and impaired recognition. Casodex is associated with chronic heart Failure,sepsis and liver damage.
My 18 months experience on Eligard (same as Lupron) is associated to my CKD stage 3 (chronic kidney failure). Surely I got other consequences but they could be a cause of aging or other not so healthy habits.

As commented by Georges above, the effect of ADT (agonists, antagonists or antiandrogens) fade away with time. In my case with monotherapy of Eligard It took me 4 months to start feeling energetic again. The Testosterone increased faster than the time it took the symptoms to disappear, but they all gone (almost all) by the six month mile stone.

https://www.webmd.com/drugs/2/drug-1591-5137/lupron-depot-intramuscular/leuprolide-monthly-3-75-mg-injection/details/list-sideeffects

https://www.webmd.com/drugs/2/drug-4510/casodex-oral/details/list-sideeffects

Best,

VG

SV
Posts: 119
Joined: Sep 2010

Thanks amigo. At the 5.5 mark of Lupron and Casodex I have starting to lose the body hair on my upper torso. (Finished both drugs now) Is this normal and does the hair grow back?

Georges Calvez
Posts: 493
Joined: Sep 2018

Hi there,

That is normal after about six months on Lupron.
What happens next depends on testosterone recovery.
As your testosterone recovers it will grow back.
I did 19 months and nine months after the last injection it is growing back nicely but softer than before.

Best wishes,

Georges

SV
Posts: 119
Joined: Sep 2010

I had two 90-day Lupron shots before 35 Proton radiation treatments last June. First shot was January 14, 2020 and the second was April 14, 2020 so theoretically I should start to shake the side effects two months after mid-July when the last Lupron shot started to wear off. So we went for the blood test last week:

Testosterone, Free, S0.42 ng/dLTestosterone, Total, S47 ng/dL

Total PSA<0.008 ng/mLVit D, 25-Hydroxy38 ng/mL

URINE

Color of Urine Light Yellow YellowYellow
Clarity of Urine Clear ClearClear
Glucose, Urine Negative mg/dL Negative mg/dLNegative mg/dL
Bilirubin, Urine Negative NegativeNegative
Ketones, Urine Negative mg/dL Negative mg/dLNegative mg/dL
Specific Gravity, Urine 1.018 1.016 - 1.0221.016 - 1.022
Blood, Urine Negative NegativeNegative
pH, Urine 5.5 pH 5.0 - 8.0 pH5.0 - 8.0 pH
Protein, Urine Negative mg/dL Negative mg/dLNegative mg/dL
Urobilinogen, Urine 0.2 mg/dL 0.2, <0.2 mg/dL0.2, <0.2 mg/dL
Nitrite, Urine Negative NegativeNegative
Leukocyte Esterase, Urine 25 NegativeNegative
RBC, Urine 3 /HPF 0 - 5 /HPF0 - 5 /HPF
WBC, Urine 6 /HPF 0 - 5 /HPF0 - 5 /HPF
Bacteria, Urine Negative /HPF Negative /HPFNegative /HPF
Hyaline Casts, Urine 0 /LPF 0 - 9 /LPF0 - 9 /LPF
Squamous Epithelial, Urine 0 /LPF /LPF/LPF
Mucus, Urine Rare /HPF Negative /HPFNegative /HPF

Comprehensive blood

Sodium 140 mmol/L 136 to 145 mmol/L136 - 145 mmol/L
Potassium 4.3 mmol/L 3.5 to 5.1 mmol/L3.5 - 5.1 mmol/L
Chloride 107 mmol/L 98 to 107 mmol/L98 - 107 mmol/L
CO2 26.5 mmol/L 23.0 to 29.0 mmol/L23.0 - 29.0 mmol/L
Anion Gap 7 mmol/L 3 - 11 mmol/L3 - 11 mmol/L
Glucose 100 mg/dL 70 to 105 mg/dL70 - 105 mg/dL
BUN 18 mg/dL 7 to 25 mg/dL7 - 25 mg/dL
Creatinine 1.0 mg/dL 0.7 to 1.3 mg/dL0.7 - 1.3 mg/dL
BUN/Creatinine Ratio 18.0 Ratio RatioRatio
Osmolality Calc 281 mOsm/kg mOsm/kgmOsm/kg
Total Protein 6.1 g/dL 6.4 to 8.9 g/dL6.4 - 8.9 g/dL
Albumin 3.9 g/dL 3.5 to 5.7 g/dL3.5 - 5.7 g/dL
Calcium 9.3 mg/dL 8.6 to 10.3 mg/dL8.6 - 10.3 mg/dL
Total Bilirubin 0.6 mg/dL 0.3 to 1.0 mg/dL0.3 - 1.0 mg/dL
Alkaline Phosphatase 81 IU/L 34 to 104 IU/L34 - 104 IU/L
AST 20 U/L 13 to 39 U/L13 - 39 U/L
ALT (SGPT) 20 IU/L 7 to 52 IU/L7 - 52 IU/L
eGFR

76.99 mL/min/1.73m*2

CBC Panel

 

WBC 3.2 K/uL 3.8 to 10.8 K/uL3.8 - 10.8 K/uL
RBC 3.69 M/uL 4.41 to 6.00 M/uL4.41 - 6.00 M/uL
Hemoglobin 12.4 g/dL 14.0 to 18.0 g/dL14.0 - 18.0 g/dL
Hematocrit 35.5 % 42.0 to 54.0 %42.0 - 54.0 %
MCV 96.2 fL 80.0 to 99.0 fL80.0 - 99.0 fL
MCH 33.6 pg 27.0 to 33.7 pg27.0 - 33.7 pg
MCHC 34.9 gm/dL 32.0 to 37.0 gm/dL32.0 - 37.0 gm/dL
RDW 13.0 % 11.5 to 14.5 %11.5 - 14.5 %
Platelet Count 201.0 K/uL 150 - 450 K/uL150 - 450 K/uL
MPV 10.6 fL 8.9 - 12.3 fL8.9 - 12.3 fL
nRBC % 0.0 % 0.0 to 0.0 %0.0 - 0.0 %
IANC 2.0 K/uL 1.9 to 10.8 K/uL1.9 - 10.8 K/uL
The IANC is a preliminary analyzer ANC that is subject to change based on further analysis that may include results from a manual differential.
Granulocyte % 61.1 % 51.0 to 89.0 %51.0 - 89.0 %
Lymphocytes % 23.4 % 10.0 to 40.0 %10.0 - 40.0 %
Monocytes % 10.6 % 4.0 to 14.0 %4.0 - 14.0 %
Eosinophil % 3.7 % 0.0 to 10.0 %0.0 - 10.0 %
Basophil % 0.6 % 0.0 to 3.0 %0.0 - 3.0 %
Immuture Granulocyte % 0.6 % 0.0 - 1.0 %0.0 - 1.0 %
Granulocyte Absolute 2.0 K/uL 1.6 to 7.8 K/uL1.6 - 7.8 K/uL
Lymphocytes Absolute 0.8 K/uL 1.2 to 3.7 K/uL1.2 - 3.7 K/uL
Monocytes Absolute 0.3 K/uL 0.2 to 1.0 K/uL0.2 - 1.0 K/uL
Eosinophils Absolute 0.1 K/uL 0.0 to 0.7 K/uL0.0 - 0.7 K/uL
Basophils Absolute 0.0 K/uL 0.0 to 0.3 K/uL0.0 - 0.3 K/uL
Immature Granulocyte Absolute 0.0 K/uL 0.0 - 1.1 K/uL0.0 - 1.1 K/uL
NRBC Absolute 0.0 K/uL 0.0 to 0.0 K/uL0.0 - 0.0 K/uL

Uric Acid4.7 mg/dL

Urine Culture<10,000 CFU/mL Microbial Flora

TSH4.794 uIU/mL

Free T40.97 ng/dL

Any idea what this means? I still have sporadic diarhea and peeing ten times a night. Maybe from the radiation? Also severe hip and knee pain but managable with 800mg Motrin

 

 

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

SV,

Can you explain what does the letter "S" mean before the value of  47ng/dl?

Have you read it correctly?

T=47 ng/dl is clinical castration which would mean that you are still under the effects of lupron. Normal T is a value above 270 ng/dl.

Please check and let us know.

Best

VG

SV
Posts: 119
Joined: Sep 2010

I'm pretty sure the S stands for Serum (testosterone)

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

Yes SV,

Your testosterone has not returned to normal levels yet. However, the condition is expected to be like that during a lasting period of two to four months post the end of the shot's effectiveness that ended in July. Your testosterone may get to normal levels by November 2020 which will also be reflected on the symptoms. These will fade away with time.
In my experience, it took me six months to reach a normal T (252 ng/dL), counting from the date of the end of effectiveness of the shot (T=<1 ng/dL).

Best,

VG

Old Salt
Posts: 775
Joined: Aug 2014

You need to discuss with your GP the finding that your hematocrit, RBC and hemoglobin are all low.

Perhaps some more iron in your diet?

As Vasco already pointed out, recovery from low T after ADT may take a long time; more so for older gents

SV
Posts: 119
Joined: Sep 2010

Could this be from no more red meat?

SV
Posts: 119
Joined: Sep 2010

It's now three months since the Lupron should have starting to wear off and I still have not felt any of the side effects diminishing. Lower body joint pain is horrible and although Vitamin V gives me a morning towel rack, still no orgasm.

But maybe this is a good thing? If my testosterone is doing a long, drawn out recovery, this also means we are still starving any possible remaining cancer cells?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3579
Joined: May 2012

Most of your results look pretty good.   As Old Salt mentioned, the CBC section show you low on WBC and RBC..  I have never studied HT, and do not know if your drugs will cuse these levels, but WBC too low can lead to Neutrophenia, and excessively low RBC can constitute anemia.    Your liver enzymes look great.

The last set of results (from "Granulocytes" on down) pertain to various chemicals at work in the bone marrow and stem cells (which produce the various types of blood cells), and they all look as if they are in normal ranges also.

eonore
Posts: 101
Joined: Jun 2017

Dear SV,

 

It can take a while for testosterone to return to normal levels.  My MO told me it can take up to two years.  In my case, my Lupron therapy was over approx. July 1, 2019.  My first testosterone test was in August, 2019, and it was still close to zero.  In November, 2019, it was up to 70.  In February, 2020, it went down to 56.  In August, 2020, it has jumped to 156, and I have started to feel more like myself, even though this is still low.  I am due to be tested in November, and I suspect I will be higher still, just based on the way I am feeling.

As far as your low RBC, hematocrit, etc., I experienced the same for a while and the MO said it was a side effect of the radiation, and these too have returned to normal.

 

Eric

roryo's picture
roryo
Posts: 3
Joined: Apr 2019

SV,

Seems you already have a good attitude which is top priority for all recovery issues.  

Yes, out of nowhere, following yearly checkups since I was 55, in 2018 I was diagnosed with prostate cancer.  I was shocked but gave it all to God to get me through it.  I will say this, surgery almost rid my body of the cancer but left a small agressive piece demostrated from my monthly PSA check up.  THe scans could lnot ocate the exact target (UCLA's PSMA scanner) so I was subjected to 2 chemo treatments that did nothing.  Next I went into 38 days of radiation.  The last 5 days was an extreme dose, so much so, that I had a 2nd degree burn on my buttock.

Again, was hopeful becasue God has my "6". But, to my dismay the PSA started to rise again. It radically drove up to 44 by the time surgery was schedule. Prostte surgery was performed at USA Medical Center. Months went by and the PSA started again to rise. I decided to check out City of Hope who could not do any bioposies as they could not determine, from 2 scans, where it resided. It appeared that it was near where the prostate was but unable to actually confirm.

We know that God teaches perseverance, and Brother,  that is what he is doing.  I had to wait almost 9 months before COH recommended another treatment.  During that time my incontinence was off the hook.  I can really relate to women's use of pads.  Let's just say I kept the company that makes them in business.  I found a urologist who performed a BLADDER SLING (BS nickname) on me.  THe reason the incontinence was so bad was my bladder was flopping around.  This is what many women who faced multiple births experience (from what Im told).

The BS was 99% sucessfull.  That 1% are minor minor small accidents and every 60-90 minutes the urge is strong and of course one has to give into voiding.  So it's just another condition that I can live with as ooposed to the alternative.

In June I begane hormone therapy at COH (Duarte).  Well let's just say, this seems to be the silver bullet.  I went from PSA 3.4>.4>.2>.04>.03.  Progress!  We're looking for a PSA of .001-2.  My oncologist says that should get me past the point of no return BUT no promises.

I too am a 70 yr old ex-fitness trainer who has always exercised from weight training, rock climbing (which was postponed for a long time), surfing (which only recently did I go back to) etc.  I continue to weight train with the help of a neighbor.  Although the treatment set me back in weight and strength, I am pleased with the direction my progress is going.

Stay strong.  Let go, Let God.  It works.

I too can suggest a whole list of of boxbriefs that go along with different kinds of pads.  My wife is an angel and did so much research to find how to make my conditions a litle more bearable during the pre bladder sling surgery.

Stay in touch.  Look to your faith.

SV
Posts: 119
Joined: Sep 2010

Looks like good news?

Testosterone, Total, S330 ng/dL

Testosterone, Free, S4.95 ng/dL

Testosterone, Bioavailable, S33 ng/dL

Testosterone, Bioavailable, S33 ng/dL

Total PSA<0.008 ng/mL

Estradiol18.4 pg/mL

What's next?

   

 

 

 

SV
Posts: 119
Joined: Sep 2010

Although I've been feeling much better as my biochemistry improves, I still have days when it seems like I'm still on Lupron. Maybe one or two days a week I feel the old familiar body aches especially in my lower body. During those times my libido also falters.

What is going on?

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

I have had similar experiences but I attributed those symptoms to aging. I was 62 when on Leuprolide and now I am 71. How old are you?

The above blood test results are super but I recall reading in one of your previous posts that the creatinine and GFR was not good. You should check for kidney malfunctioning (kidney stones?). Back pain could derive from problems in the urinary track.

Best,

VG

SV
Posts: 119
Joined: Sep 2010

I'm 69. First diagnosed ten years ago. Six months of Lupron. Last 90-day shot 4/14/2020

I do have kidney stones.

VascodaGama's picture
VascodaGama
Posts: 3297
Joined: Nov 2010

Amigo SV,

Your testosterone level has recuperate but the symptoms take longer. In any case, you need to care about your kidneys too. Have you done any creatinine and pertaining tests from urine at 24 hours?

ADT doesn’t influence your creatinine levels but it can influence in kidney deterioration.  Unregulated high blood pressure for long periods can destroy the tiny filtration blood vessels leading to the need of dialysis.  You may need to change diets to avoid further deterioration if such already exits. 

Best

VG

 

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