A newer phase in my Systemic treatment now with metastasis in bone

2

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #22

    For

    w

    looking to see what company is worth , recovery time whe you stppp h

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #23
    https://csn.cancer.org/discussion/comment/1712410#Comment_1712410

    Ira,

    I think you touched "post comment" without intent. 😁

    In any case, thanks for the suggestion about the DNA testing. I probably will not do it but my son (now 52) has done it. The results were passed to the other members of the family.

    Fortunately to us, the bandit seems not to be an heritage affair within us. He has been testing several markers (PSA, etc) since his 42 years old and these have been OK.

    Your story is also impressive. Are you having biopsies biannually?

    Active Surveillance for life.

    Best

    VG

  • hunter49
    hunter49 Member Posts: 247 Member
    #24

    Hey buddy hope your visit went well this month. You got the bandit on the run keep up the fight

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #25

    Hi Vasco

    I think that you will find this informative.

    Ira

    ASCO GU 2024: Real-World Homologous Recombination Repair Mutation Testing Patterns in Patients With Metastatic Castration-Resistant Prostate Cancer Treated With Olaparib in the United States


    https://www.urotoday.com/conference-highlights/asco-gu-2024/asco-gu-2024-prostate-cancer/149443-asco-gu-2024-real-world-homologous-recombination-repair-mutation-testing-patterns-in-patients-with-metastatic-castration-resistant-prostate-cancer-treated-with-olaparib-in-the-united-states.html?utm_source=newsletter_12548&utm_medium=email&utm_campaign=prostate-cancer-daily

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #26

    Hi,

    Ira, Olaparib is a good substitute for the current agonists but, apart from causing similar side effects, it interacts with several other drugs we take for PCa. For instance it has interaction with Erleada. Thanks for the advice.

    For those following my "story", I want to inform that my PSA is at remission levels of <0.02 ng/ml, now at the seventh month since starting ADT. The Testosterone, however, slightly increased to 28 ng/dL (T=13 ng/dL in Nov2023), probably indicating the end of the effectiveness of the Triptorelin LHRH agonist, at this end of its 6 months period.

    If I look back to 2010, when I started ADT with Eligard, this managed to maintain "clinical castration" ( <20 ng/dL), from the 4th month on through the end of the 18 months treatment (3 times 6-month shots). To such extent , my oncologist put me now on Eligard for the "second" 6-month period of ADT, which may assure a better control of the Testosterone.

    So far I have survived the triple blockade. Erleada (apalutamide) increased my blood pressure to an average of 159/89. All other markers (creatinine, blood glucose, eGFR, cholesterol, ALT, AST, etc) have maintained the same levels.

    The worst side effect has been the sporadic incontinence which could be a cause of the agonist. To verify the uncertainty, I have stopped the Avodart and diuretics, and did an ecography of the bladder which hasn't shown any problem in it. The urologist assumes it to be an issue at the urethra, probably in one of the cancerous tumors identified in a previous 3T-MRI. The next exam is a cystoscopy to complete the check up. He thinks that the sphincter muscle is "dormant" by the effects of the agonist.

    Otherwise, I got fatigue but still manage daily walks of 4km with my dogs.

    The NHS oncologist treating me his a great doctor but unfortunately he has different views than those of my "hero" and legend Dr Charles "Snuffy" Myers, in regards to hormonal treatments.

    He considers clinical castration in T levels lower than 20 ng/dL (instead of <30) but he is not a fan of intermittent hormonal therapy. He is suggesting a continuous modality as his choice in none naive-ADT patients.

    Well, I was on intermittent modality in 2010 and I aim the same this time again. I hope he accepts my wishes if I manage to keep the psa at remission levels during a 12 months period before stopping the ADT shots.

    Surely the conditions are different today because now I have identified metastasis, but a continuous approach doesn't kill the bandit and, surely will prejudice my quality of life.

    Best wishes to all my comrades sharing this fight with the bandit.

    VG

    🫠

  • Josephg
    Josephg Member Posts: 460 Member
    #27

    Thank you for your update, Vasco. We all wish you the best of outcomes on your PCa journey. As always, we greatly appreciate your presence and valued guidance on this Board.

    My next visit to my medical team is this Monday for my PSA and Testosterone checks.

  • SV
    SV Member Posts: 183 Member
    #28

    Thanks for the update amigo and always happy to hear you are still fighting the good fight. Due to re-occurrence again, Oncs put me on mono therapy with Xtandi. The good news is the harder we exercise the more we mitigate the side effects. I believe that we will be chatting for decades to come.

  • hunter49
    hunter49 Member Posts: 247 Member
    #29

    Keep up the good fight V. You got this

  • bdhilton
    bdhilton Member Posts: 866 Member
    edited April 17 #30
    https://csn.cancer.org/discussion/comment/1714572#Comment_1714572

    Hi VG,

    You always take matters with such grace. Great to hear of your PSA remission and sorry about the complications but you are spot on with your "quality of life" comments…Thank you for all you do for us here on this site!

    I will be seeing Dr. Small tomorrow, and it will be interesting to the direction he takes me, and quality of life is #1…I will report back on that my friend.

    Best wishes

  • hunter49
    hunter49 Member Posts: 247 Member
    #31

    did you have radiation on nodes prior?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #32
    https://csn.cancer.org/discussion/comment/1714572#Comment_1714572

    V.G.,

    We cancer patients have different meanings for words like 'positive' or 'good report,' vis-a-vis the mainstream population, but it seems to me that overall your results for the last six months are excellent. You speculate that certain upticks indicate an ending of remission, but let's speculate that is not indicative of remission instead !

    I continue to be in total PCa remission, but relapsed on the lymphoma about two years ago — the same strain I was diagnosed with in 2009. It is very indolent, and is easily kept in remission via maintenance drugs, at least unless it morphs into a more virulent strain, which is quite possible. I have moderate liver disease now also, believed to have been caused by chest trauma decades ago (flail chest with pneumothorax) , and/or the chemo drugs over time. NSAIDS, I have learned, cause enzyme abnormalities in high doses. I feel well, except for profound fatigue.

    What type of dog do you have ?

    Max

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #33
    https://csn.cancer.org/discussion/comment/1714685#Comment_1714685

    hi Hunter,

    In 2006 I had SRT which covered the prostate bed and inguinal nodes. I recall the radiotherapist commenting at the time in choosing 1.8 Gy/section at the prostate bed, and 2.0 Gy/section at the nodes areas.

    I was informed that the side effects from RT are progressive in time. Could such have something to do with the present incontinence situation 🤔?

    Thanks for the nice words.

    VG

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited April 24 #34

    Max,

    You are a "fighter" in many fronts. I hope that this relapse on the lymphoma keeps quietly dormant. I think that the issue started 4 years ago. Am I right?

    I am an ignorant on matters of lymphoma but I wonder how such "bugger" can turn into a more virulent strain. I hope not.

    My dogs are a German shepherd "Fausto" 11 years old and a Rhodesia lion (Ridgeback) "Kyria" 18 months old.

    As always I like to hear from you. It keeps us in check. Alive and kicking 🙃

    Best

    VG

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #35

    Hilton,

    I am curious on Dr Small protocols. He likes Xtandi, but is it enough in your case.

    I wait to read your post. By the way, where are the 🍎 apples. In particular the Japanese "Nashi".

    Thanks for caring.

    VG

  • bdhilton
    bdhilton Member Posts: 866 Member
    #36
    https://csn.cancer.org/discussion/comment/1714685#Comment_1714685
    https://csn.cancer.org/discussion/comment/1714865#Comment_1714865
    https://csn.cancer.org/discussion/comment/1714685#Comment_1714685

    VG...As I understand, wait until I have a 2x significant PSA increases (take one, once a month) then maybe/if Orgovyx + Zytiga (as an intenceifier or not)...Right now, no one is stepping up to radiate or surgically remove the possible node by my rectum due to my issues over the last 21 months healing...Hurry up and wait seems to be the treatment plan rand that's fine....

    I sold the farm and looking for another one at a lower elevation...I don't know if I told you, but my neighbor was charged with arson. He was buring weeds with a blow tourch connected to a 50 gallon propane tank on wheels in Late July in a California Forest, lol

    Thanks as always...All the Best-

    BD

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #37

    BD,

    Thanks for the info on the protocol.

    I read the PET results in your thread where they identified PSMA infection in a Perirectal node. These are lymph nodes that help the body fight infections and diseases. Most probably the protocol of Dr Small is sufficient and will "clean" the node for good.

    I am sorry for the loss of your farm. I wonder what will you plant in your next land at lower altitude.

    How about persimmons. This is the Japanese Kaki known to be a source of vitamins and minerals, that has shown to have anti-inflammatory, and anticancer properties. 😋✌️

    All the best

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #38

    With those dogs, Vasco should be very safe…

    😁

  • bdhilton
    bdhilton Member Posts: 866 Member
    #39
    https://csn.cancer.org/discussion/comment/1714871#Comment_1714871

    VG... Thanks for your input. Are you referring the perirectal node by my heart/ lung or the one by my rectum? I was told the one by the heart/lung wasn't anything unless I'm experiencing issues(?), which I'm not, but I'm having another PSMA in June...so, we'll see what shakes out then…

    We had the best Fuyu persimmon tree off the back porch at the farm, yum! I'm thinking Mission and Blacks Turkey Figs… then again, we're thinking about moving out of California because of the State tax (for me 13% last year), I can live off what I pay in State taxes but my family has been here since the 1830's....

    All the best,

    BD

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #40

    Hi,

    I am please to inform those following my story that the PSA has maintained the low level of remission of 0.2 ng/ml (T=18 ng/dL) in my last blood analysis. Apart from the "typical" fatigue and surprising incontinence, I have no other noticeable symptom.
    The hormonal treatment is doing well in keeping the bandit at bay. However, after being 23 years dry I have a sort of mixed incontinence when using strength in doing something standing. Seating and in laying positions I am dry.
    I use an urethral control device (an oval shape clip or a rounded pacey cuff) together with diapers to help me in going around.

    My oncologist doesn't think that the hormonal treatment can "provoke" incontinence but the Eligard pamphlet lists "muscle weakness or loss of muscle use, loss of bladder or bowel control...  ...", as a side effect of the drug. He suggests that the occurence may be a late side effect of the RT I did in 2006.

    Well, we know about the importance that kegel exercises has in maintaining the muscles that control incontinence. In fact, these are part of the advices given by surgeons to us patients from prostatectomies or (RT therapies). However,  no doctors tell us about the consequences of ADT in incontinence issues.

    I did some investigations and found some studies on the role of the anabolic effect of androgens on the pelvic musculature which are involved in maintaining the urethral support.
    The testosterone regulates the anabolic effects of androgens on the muscles of the pelvic floor and lower urinary tract, therefore, low serum testosterone may be associated with surge of stress and mixed incontinence in man and also in women.

    I believe that this justifies my case of incontinence that started exactly by the timing when the agonist effects kickoff in leading me to chemical castration.
    In three months I went from T=565 ng/dL to T=13 ng/dL, last November 2023. Surely the bandit got a punch too as seen in the decrease of the PSA from 11.64 ng/ml to 0.42 ng/ml at that time.
    What I can't explain is that I didn't experienced incontinence  back in 2010 when I was on ADT for 18 months.
    I  had only a surge in the frequency for urinate.

    I am hopeful for a return to normalcy once I stop ADT. For the moment I will have to endure still 9 more months on the agonist before I can start vacations on the drugs.
    Meanwhile I can only continue to exercise the muscles of the pelvic floor and lower urinary tract.

    Best to all
    VGama

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #41

    Always good to hear from you. Although your message isn't all jubilant, it's mostly positive. Congratulations!

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