Prior to having my fifth round of Pluvicto, I had bloodwork done at Quest Labs. I had the lab perform orders from three separate doctors. For some reason, they ran my PSA two times from the same blood draw. I had two different results: 21.51 and 30.0. Prior to my infusion at Stanford today, Stanford did a blood draw to compare their results with Quest. Stanford’s results were even worse at 33.5; this is a doubling time of just a little more than 8 weeks. I’m freaking out a bit. My life is just moving from one treatment to the next. After 19 years, I have grown tired and weary. No siblings, no children, no significant other. I am reaching my limit with this disease. Thanks for letting me vent.
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MJCA
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hang in there brother. I just finished my last round of Pluvicto so I know what you’re going through. My doctor emphasized that PSA numbers may vary wildly during the treatment and not to worry about them.
Check your hospital for cancer support groups - they can be helpful.
Thanks. I belong to a number of support groups. I have reached the point, that I don’t wish to hear anyone else’s issues. I have a therapist who I see weekly. As stated, I have had this 19 years. I have been able to roll with the punches. I have reached the point where I am tired of being punched around!
to reiterate what Jeff says, PSA during treatment means little. when the PC cells die they can release PSA. i ws warned about this when i had three infusions of pluvicto. PSA went up after dose 2 and i was freaked out. then it went down a while after the third. pluvicto was put on hold for various reasons. then did external beam radiation and i was told to not get a PSA test for two months as it would not provide any useful information for the same reason
Thanks. Yes, Allen told me that as well. Prior starting Pluvicto my PSA was 29.29. Prior to my third round it decreased to 14.47; prior to my fifth round it’s at 33.5. I find it disconcerting that all my cancer treatment is at Stanford, and no one has mentioned the release of PSA from dying tumors. I will definitely keep that in mind!
yes very strange. one would think that they would test PSA only at appropriate times. when i did the external beam radiation because pluvicto was paused i was anxious to know how the cancer was progressing. My radiation oncologist specifically said to wait as much as two months to have a PSA test. a scan is also to be done in maybe another month. This might be because the radiation oncologist is a woman
If you looked at my profile, I was diagnosed 19 years ago. My first PSA in 2001 was 23. The quack urologist I saw assured me it was prostatitis. Four years later and a different urologist, my PSA was 43. That was when I was officially diagnosed. If it had been addressed correctly at inception, I may not be dealing with the issues I have now.
Dude I’m 12 years out on Xtandi and lupron. They gave me casodex for awhile. I didn’t go through as many treatments as you. Nineteen years , that’s excellent but your suffering has been well documented. My PSA was 31 at diagnosis. Took many supplements and aspirin for inflammation then switched to Celebrex. I’ve been on zometa for 5 years then they stopped, said I had the maximum. It’s a horror show no one wants to hear about. I’m stage 4 as well.
You should vent as much as you like…I was diagnosed is 2004 (20 years ago-54). You were quite young when you were…
Having a Biopsy ( in 2021) they discovered a BCR…which i am dealing with…There is also intraductal which is an aggressive cancer….It isn’t metastatic so presently i am not on Pluvico. I can’t offer you any advice about what you are going through.
I do have siblings who can listen up to a point…but no partner or children…I was doing therapy once a month which helped up to a point. I stopped after two years since it came down to “living life as it is”..I was good with that, if that makes sense!
I do have a decent “spiritual life” so prayer helps relieve some of my stress. Also i attend Church once a week. There is a small degree of community there. I try staying as active as i can…Again, i understand in some ways about how you could be feeling…Billy
Thanks for your kind words. Two years ago I had a triple whammy. First off, my Dad passed away. Four days later I had a very invasive test called a urodynamic test. It confirmed that an anesthesiologist severed the nerves in my spine which allow my brain to control my bladder. It has left me using intermittent catheterization each time I urinate. Then, a few weeks later, a PSMA-PET scan confirmed my cancer had spread to a number of places in my bones. I roll with the punches. I am just getting tired of dealing with all this shit. I am glad you find solace in religion; personally I find a lot of hypocrisy in the “organized” part of religion. Being 64, no parents, siblings or partner has taught me to deal with things on my own. Luckily, I am smarter than the average bear, which provides me the ability to analyze a situation and hopefully make the best decision suited for me. I appreciate this group which allows us to celebrate the highs and seek conciliation during the lows that come from this disease.
Already have 4 cats! One of the hardest things about Pluvicto is I am radioactive the day of treatment and the following two days after. I have to stay 1M away from adults. My pets cannot be anywhere near me. So, just when I could use the love of a pet, I am isolated and the poor l’il guys don’t understand why I am holed up in my bedroom, not allowing them to join me! But, thanks for the suggestion!
I understand your thoughts about “hypocrisy” being found in Religion. However, spirituality doesn’t have to be connected to what Religion is…there are many different ways to practice spirituality…Here is one definition:
Spirituality is not a single path or belief system. There are many ways to experience spirituality and the benefits of a spiritual experience. How you define spirituality will vary. For some people, it's the belief in a higher power or a specific religious practice.
For others, it may involve experiencing a sense of connection to a higher state or a sense of inter-connectedness with the rest of humanity and nature.
In having a 20 year “relationship “ with prostate cancer i don’t like “fighting” with it any more. I have in the past with researching possible (salvage) treatments as well as getting consultations from some of top hospitals in New York City…My research at this point has led me to “needing” to accept “what is”.
Having a spirituality has led me to being kind to both myself and others…No one can fully understand another person; however, i believe that it is one’s attitude about themself, as well as about others, that can make a big difference in how we feel within ourselves (our spiritual nature)…For me, that is what spirituality involves!
Victor Frankl who was in a Nazi labor camp has a quote that says something similar to this….we can’t choose our “circumstances” but we can choose our attitude…
Possibly allowing yourself to connect ( i.e. “feel/ sense”) the pain/ and suffering of others may help more than you might expect! Strange as it sometimes is, in giving to others, we receive…sometimes receiving a lot more then what we ever “give”.
Hi MJ, I have only been dealing with PC for only 4 years, but there have been a number of complications, and like you, I am also without any family support. I already feel like "My life is just moving from one treatment to the next." So, I can only imagine how hard it has been for you over the course of 19 years. You can vent here any time!
Thanks Gary. You’ve gone through a lot in the short span of 4 years. I think what keeps me going is a sense of humor and an ability to find humor in just about any situation! Some days that doesn’t happen, I just look to laugh on the next day! I’m usually keep my cards close to my vest, just some instances I need to vent! Hang in there yourself. Best,
Hey Mate. If it wasn't for your cats and if your health would allow you to get away for say 4 - 6 weeks, I'd suggest heading to some of the poverty stricken countries in Africa or South America, or some of the islands and volunteer to make a positive difference in other peoples lives. I know of people who have had all manner of personal issues going on in their lives including terminal health issues and after having done some of that type of work, they had incredibly changed mindsets. They came back as totally different people with a totally different outlook on life.
Anyway, its not for everyone but I'm just throwing it out there.
Thanks. I understand your intention. All my treatments have killed my balance. It would be difficult traveling to a third world country when I need to get around with a 4 wheel walker.
Life can really throw us some curve balls sometimes and it is always difficult to know how to react. I guess one positive, is that you live in a good country where suffering such a debilitating disease is probably easier to bare, than if you lived in Gaza or Ukraine or the other 75% of countries that wouldn't have any where near the support and help that we get in our respective countries.
All kudo's to you for reaching out mate and I hope your post has provided a good distraction for you at this difficult time.
I just read your bio. Your last trip sounds amazing. Were you on a cruise? I have had this disease for SO long I don’t let much phase me anymore. I DO spend a lot of time by myself. I watch a lot of TV. For about 95% of the time I joke around, but I also have a very pragmatic side. I try not to take things too seriously. Yes, I have taken care of most of my estate. Probably need to do a new will.
2 of the 9 weeks away was a cruise on Royal Caribbean in the Mediterranean. The final 9 days was in Israel mainly Jerusalem which was fascinating.
We felt very safe and you would not have known anything about the war in Gaza at the time except for the fact that there were very few tourists there which made it great for us.
We went up to Tiberius Galilee for a couple of days which is close to the Lebanon border. That was interesting as we saw one rocket hit in the hills and start a fire. Israel probably would be off the list now with whats about to happen. In fact I don't think there are any flights in or out at present.
Anyway stay the course and thanks for sharing your story with us all.
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