Recently diagnosed with Gleason score of 9

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Comments

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    edited July 2020 #162
    Lupron

    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
    SV Member Posts: 183 Member
    edited July 2020 #163

    Lupron

    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

    Thanks George

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

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited July 2020 #164
    Why the push for Lupron?

    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
    SV Member Posts: 183 Member

    Why the push for Lupron?

    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

    Loss of body hair?

    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
    Georges Calvez Member Posts: 547 Member
    edited July 2020 #166
    Loss of body hair

    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
    SV Member Posts: 183 Member
    Post Lupron/ radiation blood work

    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
    VascodaGama Member Posts: 3,701 Member
    edited September 2020 #168
    T <50 ng/dl equals to Clinical Castration</b>
    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
    SV Member Posts: 183 Member
    I'm pretty sure the S stands

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

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited October 2020 #170
    Symptoms will fade away with time

    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
    Old Salt Member Posts: 1,503 Member
    edited October 2020 #171
    Low RBCs

    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
    SV Member Posts: 183 Member
    Odd side effects

    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?

  • SV
    SV Member Posts: 183 Member
    edited October 2020 #173
    Old Salt said:

    Low RBCs

    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

    Could this be from no more red meat?

  • eonore
    eonore Member Posts: 185 Member
    edited October 2020 #174

    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
    roryo Member Posts: 3
    edited October 2020 #175
    Gleason 9 PSA 44

    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.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited October 2020 #176
    SV said:

    Odd side effects

    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?

    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.

  • SV
    SV Member Posts: 183 Member
    Looks like good news?

    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
    SV Member Posts: 183 Member
    SV said:

    Looks like good news?

    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?

       

     

     

     

    Although I've been feeling

    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
    VascodaGama Member Posts: 3,701 Member
    edited January 2021 #179
    Symptoms could be from other sources

    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
    SV Member Posts: 183 Member
    edited January 2021 #180

    Symptoms could be from other sources

    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

    I'm 69. First diagnosed ten

    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
    VascodaGama Member Posts: 3,701 Member
    edited January 2021 #181
    Check your markers for kidney deterioration

    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