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

VascodaGama
VascodaGama Member Posts: 3,638 Member
edited January 17 in Prostate Cancer #1

To all in this forum and particularly the old members that have help me along the years in understanding facts on PCa issues based to their experiences, or suggestions to my case.

It has been 18 months since I dropped a post in the forum (July 2022). I felt that I have failed those that were used in receiving my prompt comments or eager in reading about developments in my PCa history. After all, we are in the same boat Navigating through the Darkness.

However, I had a busy 18 months in private doings as well as in regards to the decline of my PCa situation. Fortunately to me, I believe that I managed again to get a grip on the bandit.

It all started when the NHS changed the doctor assisting me in the fight, back in August 2022. The new one postponed my consultation twice, and I only met him in April 2023.

Meanwhile, my PSA increased from 2.03 ng/ml (July ’22) to 3.34 (Jan ’23) to 4.61 in April ’23.

The sharp increase worried me very much as it surpassed the threshold of PSA =2.5 set by my previous uro-oncologist in 2012, as the marker to end the vacation period (off-drugs) in my intermittent hormonal therapy, obliging a restart of full ADT.

This new doctor (Ukrainian national) approaches were all out of pace and sort of antiquated. He opposed my wish in doing scans to verify the sudden doubling of the PSA which, in my opinion, could help in deciding the protocol of the treatment, regarding the choice of the drugs.

A friend of mine and member of this forum, come to my rescue and help me in having consultation and exams done in Singapore. The results drastically changed the procedure of my continued treatment. 

The scans (18F-PET FDG and 3T-MRI) identified recurrence at the urethra which prompted me in conducting a 68Ga PSMA PET (Oct ’23) that confirmed the localized recurrence at prostate bed in addition to a bone metastasis in the pubic bone. 

According to a NHS radiotherapist I can do spot radiation SBRT (oligometastatic treatment) but radiating the three “volumes” at the urethra can cause stricture which is not recommended as I am CKD stage-3.

My case history is in study at the NHS’s weekly Multidisciplinary Meeting reviewed by seven doctors from different disciplines.

Meanwhile the NHS assigned a medical oncologist to assist my case who have decided in a protocol of three blockades made with a LHRH agonist (Triptorelin 6-shot, started in October), plus a 5-ARI (Dutasteride, started in June), plus an antiandrogen (Apalutamide, to be started in January).

My PSA continued the increase reaching the level of 11.64 ng/ml (Sept ’23). From there it started to decline now at 0.21 (Dec ’23).

The PSA accompanied the decrease of the testosterone from 456 ng/dL (Sept ’23) to <2 ng/dL (Dec ’23). Such signifies that my cancerous cells dependent much on the circulating testosterone. Can I keep the bandit on the canvas again as I did it in 2010?

Well, my next appointment is scheduled for January 24th, in which day I will be informed about the SBRT decision from the Multidisciplinary Meeting. Most probably they will recommend spot radiation but I would prefer to radiate only the metastasis at the pubic bone. I want to keep my quality of life.

Please note that I have no private insurance to choose what I most like. I am dependent on the Portuguese national health services (NHS) where it takes ages to have things done.

For those interested in reading the details of my history please refer to previous threads listed under my acronym VascodaGama.

 https://csn.cancer.org/discussion/320970/systemic-treatment-my-experience-and-update#latest


Best wishes for a happy holiday season and a healthy new year to the members of this forum and their families.

VGama 

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 951 Member

    Hi Vasco,

    Good to have you back on the forum and I am glad your getting a handle on your Prostate cancer reoccurrence. The best holiday wishes for you and your family.

    Dave 3+4

  • Josephg
    Josephg Member Posts: 368 Member

    SO good to hear from you again, Vasco, my PCa Soul Mate.

    I'm sorry to read that the bandit has become active again, but I am glad that you were able to get some medical assistance\advice outside of the NHS. I am also glad that your new treatment protocol is showing that your PCa is still testosterone dependent for nutrition.

    I look forward to your next update from your January appointment. If you go the SRBT routs, know that I went that route 3 years ago for a local metastasis in my pelvic bone, and my PSA is currently undetectable.

    As always, I wish you the best of outcomes on your PCa journey.

  • oldspice
    oldspice Member Posts: 51 Member

    Just read your story Gama man. Great story and inspirational as well. Sorry to hear of your reoccurance but you are one tough and smart dude. I wish you the best moving forward and welcome back. What is your age if u don’t mind me asking?

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    I am 74.

    I was diagnosed in 2000 when I was 50 years old.

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Joseph

    I know of your spot radiation. Your story is inspiring too. Hopefully it all goes in your favor.

    Best wishes

    VG

  • bdhilton
    bdhilton Member Posts: 846 Member
    edited December 2023 #7

    VG...So good to hear from you and pleased to hear about you getting a handle on the beast during your absence.. I get bottleneck in my treatments too but I'm blessed to have options in my treatment and care providers...I'm sure you've mastered your Country's medical system....again, happy you're back and keep your providers jumping...All the best and Merry Christmas

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member

    I was quite worried about your absence, V., and asked the members here several times if they 'knew anything.' It is a Christmas Joy to read this today, on Christmas Eve.

    It sounds like you have outwitted the enemy once again.... May you be blessed and have many more years,

    max

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hilton,

    Thanks for the note.

    In fact, the outcome of your 2022 radiation at bladder's wall has been in my mind since the detection in May '23 of the little tumors in my urethra.

    I belive that many localized recurrences (including mine) in prostatectomy guys is at the sphincter area (bladder's neck) that may spread to the walls. In open surgeries of the past, surgeons tended to spare the sphincter to avoid incontinence.

    Well in my case, I never experienced incontinence along the 23 years of survival, but the hormonal treatment I started this October, in arresting the bandit (PSA down from 11.64 to 0.21 in three months) also caused me loose sensation imparing the function of the sphincter. In the past three weeks I occasionally have a drip without noticing.

    Your experience is guiding my thoughts in regards to the SBRT I may be doing by mid 2024. I plan to discuss about the Luneray needle-catheters (brachytherapy) you have introduced to me last year.

    Surely I want to have an opinion from the radiotherapist based on your sour experience with the localized spot radiation that affected the ureters. Otherwise I will radiate the pubic bone alone.

    I read your post on the negative PSMA scan and the rising PSA (Dec 1.47). The negative scan could be due to the relatively low PSA at the time you did the exam. Let's cross our fingers that you get it right again to a controlled manner.

    Best wishes.

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi Max,

    Thanks for the comments.

    In Portugal we say that we are like the Port wine when we get older. "It gets better as the years passes by".

    Merry Christmas to you too.

  • Bill91101
    Bill91101 Member Posts: 81 Member

    Vasco:

    Good to see you back on the forum and that you're still fighting!

    Happy Holidays,

    Bill

  • bdhilton
    bdhilton Member Posts: 846 Member

    VG...

    Yes, the outcome from the entire SBRT process could have been better, but that is what the Universe gave me. I started this dance with UCSF back in Dec 2019. It’s all a “pig at a poke”…

    I never had an explanation as to the change of treatment (literally in surgery) between Branchytheropy and SBRT but I was clearly in good hands. My Oncologist Radiologist has since gone on to continue his career in academia at MD Anderson Cancer Center.

    UCSF reached out today and, in the 15+ years, I’ve been dealing with this beast, I’m being assigned my first Medical Oncologist (Eric Small MD).…Any thoughts?

    I had a similar issue with the loss of sensation briefly last year after my ureter reconnect surgery but it was short lived…

    Please let me know, if you’d like my records on my last treatment(s) for your upcoming visit. 

    All the Best-BD

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    BD

    I do not know much about Eric Small performance as a doctor but his curriculum vitae is long.

    He also has many years in research work regarding the newer drugs, used nowadays in PCa treatment like Xtandi and Zytiga.

    He is from the times when ketoconazole was used (17-aliase blockade of androgens "manufacturing") in refractory patients, now replaced by Zytiga.

    E Small, as an expert on drugs, I wonder what he is going to recommend you. However, think in having scans done (if any) before starting hormonal treatment, if so is required.

    In May I met an american medical oncologist also a researcher from the times of ketoconazole.

    He was a cancer specialist at the UCLA, but moved to Singapore in 2006 where he opened his clinic. Very much acclaimed and a very good medical oncologist.

    And, Yes. I would like to to know details/records on your last treatment(s).

    I am very glad in knowing of your full recovery.

    Best

    VG 

  • bdhilton
    bdhilton Member Posts: 846 Member

    VG...

    As always, thank you for your insight and input.

    Yes, I assume a MRI or another PSMA will be conducted prior to any drug regime.

    I'm UC bias (UC Berkley is my family's alma mater going back to the beginning) and my extended medical team(s) have given me their best...I'm sure they have "humored me" along the way too...

    Your trip to Singapore sounds like it was successful. Singapore was my Asia-Pacific hub for many years (1998-2008)...

    I'll forward my email address to your inbox here so I can send the files...

    Happy New year and all the best-BD

  • Old Salt
    Old Salt Member Posts: 1,261 Member

    So glad to see Vasco back in an active role on this forum.

    Let the dragon kill all wayward prostate cells!

  • centralPA
    centralPA Member Posts: 209 Member

    If you get SBRT, you can change your name to Vascoda Gamma 😉

  • SV
    SV Member Posts: 180 Member

    So happy to hear that you are still with us and that your PSA went down.

  • lighterwood67
    lighterwood67 Member Posts: 374 Member

    Well, glad to see you posting. We all have our on test tubes, so to speak, to deal with. You have studied many and commented and helped a lot of folks while dealing with yours. As I said within a previous post, the Dragon has awakened. God Bless. Best of luck on your journey.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Hi Fernando,

    Also, I have not been active at the forum of late I just noticed your post Been very active moderating for my local support group using zoom

    Im sorry to read of the challenges that you are experiencing.

    Here are some random thoughts, some of which you may wish to discuss with your medical team.

    First, you mention CKD stage 3. A term that I am not familiar with, apparently Mr Google mentions kidney disease.

    There is a synergistic effect by intensification of treatment up front; that your medical oncologist ordered. Radiation along with the hormone treatment would be a triplet So if you are healthy enough to endure, it can accomplish good results

    By the way, there is a drug Orgovyx, taken in pill form, that is superior to lupron , however very costly in the USA

    The PSMA is the state of the art, and is the superior imaging test now a days; compared with other imaging tests

    Do you have a family history of prostate cancer? Have you had DNA testing for inherited/germline mutations? Was somatic genomic sequencing deemed necessary and if so, did you exhibit any mutations?

    My thoughts are with you, wishing you the best

    Ira

    -

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    edited January 16 #20

    Hi, again.

    Central;

    ... you are right. SBRT of my recurrence would be like a Vasco da Gama adventure.

    A radiotherapist I have consulted in September 2023, is an expert well acquainted in treating "delicate areas" using live imaging equipment during the radiation, but even so he would not assure me an equal or similarly close quality of life to the one I presently have.

    If the NHS Multidisciplinary Meeting decides in advancing with the RT, I would become the one to choose the scope of the areas of attack. At the urethra, it should be something similar to the Luneray needle-catheters (sort of brachytherapy) limiting the area of exposure.

    Thanks for the comment.

    SV ;

    ... I am glad for receiving your post. You are alive and kicking. That is just wonderful.

    Lighterwood ;

    ... if you recall one of my previous threads, where I describe the feeling I had, when back in 2000, I heard the doctor saying "... you have cancer".

    That was the beginning of my journey, probably as much as the one of all us. That feeling that I continue to walk advancing in the same path together with everyone but that a some moment this path divides into two, and starts deviating far apart little by little. This is life. I am learning in living each phase with the newer me.

    Thanks for the comments.

    Ira ;

    ... I wonder if you play ukulele via zoom too. Just kidding.

    Yes, you are right. I believe that my Chronic kidney disease was exacerbated during the eligard period. Some how my blood pressure went bananas, without me noticing, and damaged a portion of the tiny vessels filtrating the urea. I am now careful with diet and the situation is maintained.

    In regards to the DNA profile you question above, I have none. At my systemic stage it wouldn't be of help. The drugs I take are fulfilling the job and chemotherapy would not be in my "sleeve", now that I am already 74. Though I believe that it would have been helpful back in 1995, if the GP would have taken a look in the genomic sequencing, instead of the PAP test he did 5 years inarrow (pre PSA era). Now is too late.

    Orgovyx is nice but it doesn't avoid the symptoms from hypogonadism. Surely it would be friendlier than the Triptorelin I am under now. The drug in my protocol that worries me most is Avodart. This 5-ARI could be behind my experience of occasional drips. They occur unnoticed meaning that the nerves controlling the sphincter are "sleepy". Common treatment to those afflicted with urine retention.

    I think that you continue on AS. Thanks for the good job in helping those participating in your local support group.

    Best wishes

    VG

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    VG

    Still AS for me, since 3/09.

    A different opinion. I believe that it is best to have as much information as you can about our cases.

    Basically there are two types of dna tests; somatic( inherited) and germline ( inherited plus environment

    The somatic can give information about not only prostate cancer, but other health conditions ( good to know about. . L) if you find aparticular negative dna gene, it can be shared with any offsring, brother, sister etc,

    Although treating some abnormal DNA’s is considered chemo, chemo can be a best choice at the time in the future.