Everything quit working
I have been taking nebequa, lupron and chemo for two years and all has quit working and PSA is back to 6.08 Now I guess I will start Xtandi, Orgovyx, and Plavicto. Has anyone else taken this combination? MyPet Scan showed tumers are growing, But I have no pain. I also had two deep bone biopsy, but my bones are too hard to get enough sample to run many of the tests they wanted. What a mess, I guess I will just keep going and see what happens
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You are in the position. I am worried about happening to me. Since I have BRCA2, I have a drug called a PARP Inhibitor that works for those that have the genetic problem of BRCA. The next step if that doesn’t work for Long is Pluvicto. It is supposed to be very effective for those that have BRCA.
Have you had genetic testing? There is both hereditary and somatic, genetic test testing. You may not have something in your hereditary, but you could have something that came up when your cancer cells Had a genetic change. I know people who have had their cells become BRCA2. You definitely want to run those tests.
Be aware that it works really well for 33% of people OK for 33% of people and not at all for 33% of people.
If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.
If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant.
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5 Reactions@jeffmarc Yes, I had those tests and was told everything is OK
@oldfords How long can I expect the side effects to last after each infusion?
@oldfords
Because everybody reacts differently, there’s no way to tell you exactly how you are going to react. Some people with either Pluvicto or chemo have very few side effects. Some of them have serious side effects.
@jeffmarc Hey Jeff, You may have posted this one or more times, but I don't recall how long you have been diagnosed, and therefore how long you have been a survivor after your RP and/or radiation therapy. How many months or years are you into your journey?
@rlpostrp
In 2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 28 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 3 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.
Thanks Jeff - your story, while I am sure is frustrating with the reoccurrences, points to the fact that even with all of that, you are still alive 16 years after diagnosis...that is GREAT! I hope that your quality of life has not suffered too much.
I was older at age 69 upon diagnosis in December 2024 (biopsy)/January 2025 (biopsy report discussion), but I turned 70 years old a month later in February. I had my radical prostatectomy in mid-April, so coming up on one year. I've had two consecutive Ultrasensitive PSA's of 0.006 ng/ml three months apart, which is good, along with regular Total PSA's of < 0.01ng/ml. And at both pre-op and post-op, the pathologist held my Gleason at 3+4=7 because I only had 6-10% of cells that were rated as "4" level. My PET Scan done before surgery but after biopsy revealed disease confined to the prostate, no radioacitvity in lymph nodes or elsewhere.
My quality of life is suffering in the form of a complete inability to achieve erections. The boy is a dead, wet noodle, despite starting with 5 mg Cialis, then moving to 20 mg every other day. My doctor says some men take up to two years before achieving their first erections. But he also admitted that some men unfortunately never recover. He said that he'll discuss Trimix in detail "when I am ready." Right now as a divorced man (March 2025) I "was" looking forward to dating and finding someone special, but I am not allowing myself that pleasure until I know that I can satisfy her in the bedroom. I don't want the humiliation, and I don't want to set up a woman whose heart starts to become mine, and then tell her: "oh by the way, I am incapable of penetrating intercourse." It also has crossed my mind "many" times whether I should attempt/pursue a relationship knowing that my pT3b type of cancer has a 25-50% recurrence rate "within" the first five years post-op. My urologist says that in his practice he sees about 33% of men who are pT3b show recurrence, and usually around 34-36 months post-op. It all sucks.
I am out in the neighborhood doing errands and going places, seeing all kinds of men over 60, and I wonder "do they have prostate cancer like me?" And, "why was I one of the unlucky 1 in 7 men (14%) who got the cancer, but 6 out of 7 (86%) do NOT and WILL NOT ever have prostate cancer. How come they got lucky and I didn't? That stuff eats away at me.
My only good news is that my maternal Grandfather had prostate cancer, never had the surgery or radiation, and lived to 96 having died of Alzheimers. My own dad lived to 99 years 10 months "with" prostate cancer - never had the surgery or radiation. And my maternal uncle had it a lived to 86, but died of a massive cluster-bomb stroke, not the cancer. I can only hope that with my EPE, surgical margins, left seminal vesicle invasion, and Cribfriform gland tissue, that I can still live into my 90's (if they are quality years). In fact too, I hear it is now more like in 1 in 4 men get prostate cancer now...things are getting worse for men. I am sure people are researching why. That means 4 out of 5 (80%) or 6 out of 7 (86%) still don't get it. Even my own 77-year old brother-in-law who isn't all that healthy (other issues), doesn't have it. My mind and emotions will never be at rest...this is something that we all will think about for the rest of our lives until/if it finally kills us...or we die of something else. It's the proverbial ticking time bomb...and as I say: "the black raven sitting on my shoulder, pecking me on a daily basis saying "I'm still here, I am never going away, and one day I will kill you." Thanks for your reply.
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1 ReactionActually, it’s one and eight men that get prostate cancer.
Erection problems. It’s too bad you missed the Mayo Clinic monthly meeting last week. The doctor covered erectile dysfunction. Yes, he covered Cialis and using a pump which is very important. Get a penis pump. Get yourself erect at times maybe two or three times a week at least. I did that for about a year but became allergic to the Water-based gel you need to use. Major rash on my penis. That keeps the tissue from Deteriorating. He did bring this up and said it was important.
And then he talked about Trimix and Bimix, With some people on here have said worked really well to get a significant Erection. One problem is that the tissue around the penis can get damaged and start leaking so that you can’t possibly keep an erection.
Then he talked for quite a while about the implant. It goes up both sides, inside your penis, where blood would normally flow. You then hit the button and it pumps liquid into the tubes, and makes you erect. It works really well and people really like it. It’s got a 80 to 90% favorability rate. They’re working on a newer version that you just have to use an app on your phone to get an erection.
I’m including three slides from the meeting. They slide about using injections that shows the two spots in the penis from which they put the implant As well as two slides about the implant.
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1 ReactionMan with my issues with ED from PreGabalin I don't think I'd want an erection that badly. It makes my libido feel like -50 on a scale from 1-10. I can't imagine it would even feel good.
Quite a few years ago my PCP prescribed a med called Accupril for high BP. It killed my ability to get it up big time. There wasn't enough Viagra in Iowa to overcome it.
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1 Reaction@jeffmarc
"Actually, it’s one and eight men that get prostate cancer."
Yes, AND it is 1 in 6 after age 65, and that fact makes me even more sad, I wish that nobody else has to go through this. : (((
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