Recently diagnosed with Gleason score of 9

1…789101113»

Comments

  • rogerdlama48@gmail.com
    rogerdlama48@gmail.com Member Posts: 11 Member
    #242
    https://csn.cancer.org/discussion/202020/recently-diagnosed-with-gleason-score-of-9


  • rogerdlama48@gmail.com
    rogerdlama48@gmail.com Member Posts: 11 Member
    #243

    I don't know if I'm in the right place


    It has been a while since I have made a comment about my prostate cancer.

    I just found a message that I sent to myself.

    It was about my pathology report and I had forgotten about it.

    I had 7 weeks of radiation therapy treatments after my Gleason 9 prostate cancer surgery removed my prostate gland.

    The radiation oncology doctor said that my pathology report said I had a large tumor on my prostate gland that extracted up into my bladder.

    I knew that the radiation therapy treatments were for the prostate cancer in the connective tissue of my bladder but I don't remember him telling me that a tumor extended up in my bladder.

    My surgery was March 6 2017 and radiation therapy treatments were in June and July of 2017 .

    My PSA test results have been <.01 since having my prostate gland removed. I asked the doctor what my chances were of survival and he said fifty fifty.

    Now I am worried because I thought I was going to be okay but now I don't know.

    I used my veterans healthcare and surgery was at the Wright Patterson Air Force Base hospital.

    My radiation therapy treatments were at a private hospital in my hometown

    So I guess I am going to call the radiation doctor and tell my VA urologist about it and see what they will do.

  • SV
    SV Member Posts: 183 Member
    #244
    https://csn.cancer.org/discussion/comment/1695503#Comment_1695503

    Abrigato! Much has happened lately. Here's a recap:

    In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3=7. Subsequent PSA was non-detectable as tested every three months for the first two years. Five years after surgery I felt confident enough to start TRT. (Testosterone replacement therapy)

    For the next ten years PSA remained non-detectable with no incontinence and an active sex life. In 2019 the cancer suddenly went active again with PSA rising from zero to 2.0 in 18 months. PET scan revealed two lesions in my seminal vesicles so I went on Lupron for six months. After four months, I had 35 Proton treatments targeting seminal vesicles and prostate bed. A few months later when the Lupron wore off, and my testosterone rose, my PSA started rising immediately. A new PSMA scan at UCLA June of 2020 revealed a microscopic lesion in right pelvic bone.

    Three treatments of SBRT was used 6/20/2020 without ADT because several doctors said it would not be needed on such a small lesion. But right after SBRT treatment my PSA continued to rise monthly from .29 to 4.9 over six months. (It was a slow rise at first but the last two months my PSA skyrocketed from.68 to 4.9). No one could account for the dramatic rise except that during that time I had a severe eColi blood infection treated with IV antibiotics.

    New PSMA scan 10/18/2021 indicated two small lesions in my lower spine and one in my hip bone. So I started Orgovyx ADT 10/27/2021 with three treatments of SBRT performed at UCLA 18 days later. Blood work on the day before SBRT showed my PSA had dropped to .070 along with testosterone to almost zero in 17 days. PSA 05/05/2022 was .008 and testosterone <7 ng/dL.

    Even after SBRT, we realized that spinal mets means the possibility of lingering rogue cancer cells or micro tumors too small to see on PSMA scans. We hoped that those could be starved with Orgovyx. Dr. Steinberg at UCLA thought that SBRT plus Orgovyx was sufficient. My City of Hope oncologist, Dr. Dorf, said a secondary agent was not yet necessary after SBRT. She prescribed six months to one year of Orgovyx with 90-days shots of Xgeva. My hemoglobin is way down as is kidney function. I’m now at the thirteenth month on Orgovyx and for the last two months PSA has begun a slow rise so we started with Zytiga/ pred combo.

    PSA has still been rising quicker every test even though I started Zytiga a month ago.

    Latest PSA.jpg

    A PSMA scan last month showed two small lesions, one at T4 and the other nearby on the rib. I was told that Pluvicto was toxic to low volume disease like mine so now considering a clinical trial using Lu-177-PSMA-I&T.

    Opinions?

  • centralPA
    centralPA Member Posts: 322 Member
    edited January 2023 #245


    I’m betting the day will come where Pluvicto will be a frontline treatment, first horse out of the gate. What is not to love about a therapy that sends radiation directly to the cells you want to kill, and that are sensitive to it? Until then, we wait for people like yourself that are later in the fight to prove it works…and work it does.

    Best of luck, shipmate.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #246

    Hi,

    Thanks for sharing your story. Hopefully you have a good 2023, free of treatments. I think that your body needs a period of recovery even if it means that PCa continues its path.

    Before anything else you need to be sure that this trial will work in your favor and that your health conditions accept further deterioration, particularly regarding kidney issues and low levels of blood cells count.

    Pluvicto is a radiopharmaceutical made up of Lu-177 plus PSMA isotope. This is indicated to patients that responded well in prostate-specific membrane antigen (PSMA) scans with positive imagery, which has been your case, even if, as you say, some tiny metastases did not reveal themselves. This occurs because some PCa cells do not respond to membrane antigen activities as not all of them produce the stuff.

    In any case, it is known that long-term, accruing radiation exposure is associated with an increased risk for other cancers. If you go along with the trial you should be attentive to the development of any new or worsening symptoms regarding your low blood cells count. That could lead to other health issues.

    Check and choose wisely.

    Best of lucks.

    VGama

  • SV
    SV Member Posts: 183 Member
    #247

    I'm having trouble with left kidney and hope to rehabilitate it. Left ureter was plugged up for six months with fragments from previous stone procedure. Blood work looks bad. Any suggestions?

    NM Renal Scan W Flow And Function 1/5/2023 2:52 PM

    Ordering Location: Patient Location: Account Number:

    Accession Number:

    5/24/1952 / 70 y.o. / M LQN DIAGNOSTIC IMAGING

    Report Status: Final

    NUCLEAR MEDICINE RENAL SCAN WITH FLOW AND FUNCTIONAL ANALYSIS HISTORY:

    Kidney stone

    N18.31: Chronic kidney disease (CKD) stage G3a/A1, moderately decreased glomerular filtration rate (GFR) between 45-59 mL/min/1.73 square meter

    and

    albuminuria creatinine ratio less than 30 mg/g (CMS/HCC)

    COMPARISON:

    CT urogram 10/13/2022 TECHNIQUE:

    Posterior projection imaging of the abdomen and pelvis was performed after the

    intravenous injection of

    10 millicurie TECHNETIUM TC 99M MERTIATIDE Tc 99m MAG-3. Initial flow images

    were obtained followed by functional and excretion images. Subsequent reconstructions of the raw data were utilized to create flow and function curves

    as well as estimate differential function between the kidneys.

    FINDINGS:

    There appears to be symmetric flow to both kidneys. There is asymmetric uptake

    of the right kidney compared to the left side. Normal bladder activity is visualized.

    Functional curves demonstrate time to maximum activity of 4 minutes on the right

    and 30 minutes on the left. One half maximum activity is achieved at 16 minutes

    on the right and is not achieved on the left over the duration of the exam.

    Split function analysis shows significant asymmetry of approximately 85% right

    and 15% left.

    IMPRESSION:

    Significantly decreased left renal function compared to the right kidney, as

    outlined above.

    No evidence of hydronephrosis.

  • SV
    SV Member Posts: 183 Member
    edited March 2023 #248


  • SV
    SV Member Posts: 183 Member
    #249
    CompMeta2:23:23.pdf


  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #250

    Hi,

    We did talk about the kidney problem 3 years ago. These late values sets you in the group 3 CKD, from where there is no return. You need to change your diet to avoid further deterioration.


    Best

    VG

  • SV
    SV Member Posts: 183 Member
    edited March 2023 #251
    https://csn.cancer.org/discussion/comment/1704411#Comment_1704411

    Thanks. With dietary changes can we still save my kidney? Currently reduced protein intake to 50 grams a day--one egg, one chicken breast, 8 0z salmon filet, organic grass fed protein powder and rarely a steak. Very little sugar and salt. All carbs are from sweet potatoes, organic fruits and veggies. Brocolli, cauliflower, artichokes, mixed greens, blue berries and apples. And grass fed whole milk Greek yogurt. And about to start taking a statin.

    I also exercise heavily combined with Yoga and meditation.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #252

    😁😁😁

    Yes, this is a good diet. The statin will do the trick too. Try controlling the blood pressure to avoid further damage of the tiny vessels filtrating the blood in the kidneys. This is the key to avoid deterioration. I am in similar shoes.

    Best

    VG

  • SV
    SV Member Posts: 183 Member
    #253

    So do you think if I follow the best medical advice that I could still save that kidney? Because my ureter had scarred almost closed my urologist has left a stent in there for the last five months and probably another six months. We are concerned that if I do the Pluvicto treatment and if my ureter is clogged, it will be hard to urinate the radiation. What do you think?

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    edited March 2023 #254

    These are two distinct matters. Your doctor's worries regards the draining process (excretion of urine). The problem of CKD is the filtration

    I would think that clogging could occurre if PSMA producing cells (prostatic) exist along the urine track (ureters and bladder wall) where accumulation of the radiopharmaceutical Lu-177 PSMA would be expected.

    However, this treatment requires a previous PSMA PET scan to check for the location of those cells and avoid risks.

  • SV
    SV Member Posts: 183 Member
    #255

    Just catching up-- I was finally admitted into the LU177 I&T clinical trial and have completed two of the four approved treatments. So far no side effects other than some mild fatigue.

    The good news is that my EGFR number that was down to 36 is now back up to 77. Maybe my kidney is going to recover after all? We have left the ureter stent in because we’re afraid if we take it out now that after the treatments we will need to be able to drain both kidneys for at least a week or two. We still have the problem of how to keep the left ureter from closing once the stent is finally removed. Any ideas on how to keep the ureter open?

    https://eclipseclinicaltrial.org/

Discussion Boards