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Is PSA rise inevitable after hormone therapy?

Posted by rwski79 @rwski79, Mar 18 9:31am

In 2024 I had a prostatectomy & PSA rose, am a Gleason 9, stage 4. PSMA detected lung nodules (only area) that disappeared after Eligard injection and PSA became undetectable. Added Nubeqa for “doublet” therapy. Given the above, has anyone had PSA remain undetectable for a long period ? How long? Or is it inevitable PSA will rise with just doublet therapy? Is adding Chemo (Docetaxel?) INEVITABLE to keep PSA undetectable for longer? Have foot neuropathy so hesitate with chemo that risks more advanced, permanent neuropathy. So far hot flashes(big time!)only side effect from hormone therapy.

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jeffMar | @jeffmarc | Mar 24 10:25am
In reply to @chippydoo "I was going to change from Lupron to Orgorvyx but haven't had anything higher than a..." + (show)
@chippydoo

I was going to change from Lupron to Orgorvyx but haven't had anything higher than a warm flash with zero sweats. My concern is Orgovys will trigger them. Rethinking changing. With high-risk cancer I might benefit from a slower ADT recovery.

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When I switched from Lupron to Orgovyx My hot flashes actually stopped completely for about four months. Then they started coming back to about the same level that I had with Lupron. Definitely did not get any worse with orgovyx.

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rwski79 | @rwski79 | Mar 26 9:36am
In reply to @jmarshall29 "Never too many questions and I'm always glad to share info and discuss! It will be..." + (show)
@jmarshall29

Never too many questions and I'm always glad to share info and discuss! It will be helpful to both of us and hopefully others who have similar situations can give their input.

1. I stopped taking the Daro and Nubeqa in April 2023. The hot flashes continued for only a short time as my body transitioned out but then stopped. No more hot flashes and my energy level and overall mood and outlook improved. I was handling these side effects okay and felt like they were worth it compared to the possible outcome with no treatment. What concerned me more was the potential long term side effects. I'm no expert but have researched a lot probably like you and most others on this site. I was concerned about other potential debilitating side effects - mainly coronary issues and osteoporosis. I felt like the intermittent ADT was supportable as a good option and one of my oncologists agreed with me. My other oncologist was skeptical and advised against it but is surprised and pleased with the current ADT vacation I've taken.
2. When I went off ADT I was monitoring my PSA once a month and now about every 60 days. I was told once a month is too much and creates too much anxiety. It probably depends on the individual but not knowing is more worrisome for me and I preferred checking it more often.
3. The oncologist who advised against intermittent hormone therapy was my original doctor and he did strongly recommend the triplet therapy. I chose to try just ADT first and stay away from chemo understanding that the triplet therapy is standard of care. Chemo wasn't going to "cure" me and my doctor explained the benefit of a favorable outcome in terms of only months, and that just didn't seem worth it in my opinion. I would never suggest that anyone not listen to their oncologist, or avoid chemo. It was just an individual decision that I made knowing the risks. And I continue to get second opinions.
4. I have been extremely lucky to have my wife as a "life coach" and supporter through this. She researched and read about alternatives to standard cancer care and eventually locked in on the importance of diets. When the metastasis was confirmed, I immediately switched to a 80-90% vegan diet - no red meat, chicken, dairy, sugar, etc. but I do eat fish. Whether that has been a game changer for my success on ADT, and now without ADT, I have no idea. I really wish there was a way to determine that. I do know it has helped me cope with the side effects and avoid foods that supposedly feed cancer growth. The hard part for me is maintaining weight but I do feel better. Her original research started with the book "Chris Beat Cancer" if you want to check that out. I'm trying to balance the medical and non-medical research and advice.
5. Yes, I say I'm realistic because obviously most of the data (at least as far as I have read) is that it finds a way to come back. As successful as ADT is, it's not considered a cure so I am realistic in the probable outcome of the other shoe falling but hopefully way down the road. There are some isolated cases where lung-only metastasis patients have had favorable outcomes. So, I'm always hopeful and trying to figure out next steps as the medical options improve.
6. I have no scans scheduled at this point, but if my PSA jumps up again, the plan would include a PET scan to identify the location and extent. I did have a chest CT a couple of months ago and lung nodules still showed up but were fewer in number and smaller in size. Unlike with a PET scan, the doctor could not say which ones were cancerous and which ones were benign but the PSA is down. I think for all of us here, it's the unknown that is so difficult and then trying to figure out a path with all of these variables.

I'll be hoping to hear good news from you! Let's definitely keep comparing treatments and alternatives.

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J.Marshall: Thanks for your shared information! Indeed we have very similar situations with lung only nodules and the treatments, etc. I will ask my oncologist about the "vacation" from ADT , however, as it has been just two (3 mo) injections of Eligard, he will likely say "not yet" but it's worth a try!
So, now you are off both ADT and Nubeqa and no rising PSA? Fantastic! The chemo/Triplet still terrifies my, given my current undetectable PSA and low testosterone. My oncologist said even after the triplet Id continue with ADT and Nubeqa. Ugh. Wonder if that"s the "norm" after triplet?
My primary care doctor recommended I not do regular PSA/monthly samples because if I saw a rise Id likely need/opt for chemo. Too much information. Another "UGH"
My wife is also a great coach and frankly, don't know what Id do without her and the great support.
Thanks again for your note - keep me posted!

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ecurb | @ecurb | Mar 26 10:54am
In reply to @ecurb "Vitamin B6 I just started to raise my RBC count. Didn’t know it helps neuropathy also...." + (show)
@ecurb

Vitamin B6 I just started to raise my RBC count. Didn’t know it helps neuropathy also. Thanks Jeffmarc.

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Oops. Vitamin B 12

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ikep | @ikep | Mar 27 8:03am

Had ADT for 2 1/2 years (Orgovix & Nubeqa) After one year PSA undetectable. Has remained undetectable for about 3 years now, which is good news. Bad news is Testosterone undetectable for 1 year during treatment and still undetectable one year after stopping treatment. Age 85

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dailyeffort | @dailyeffort | Mar 27 1:16pm
In reply to @chippydoo "I was going to change from Lupron to Orgorvyx but haven't had anything higher than a..." + (show)
@chippydoo

I was going to change from Lupron to Orgorvyx but haven't had anything higher than a warm flash with zero sweats. My concern is Orgovys will trigger them. Rethinking changing. With high-risk cancer I might benefit from a slower ADT recovery.

Jump to this post

I have the same thought. With very high risk disease, the slower recovery time for testosterone might not be a negative in terms of time to BCR. While the side effects of lupron + abiraterone + prednisone were present for the 2 years I was on it (plus a good part of the following year), I wouldn't hesitate to use lupron again, if needed. I recently looked back through the gallery of pictures on my phone. Those two years were spent kayaking, hiking, xc skiing and mountain biking with family and friends. We also put in a large veggie garden at the cabin. And yes, there were far more naps than usual, but they kept me going. It did take longer than usual to complete some projects, such as painting the exterior of the house, but it made me realize that there was no particular reason that I had to complete it as quickly as I normally would have. PCa has made me slow down, find the good in each day ( even the tough ones), and appreciate life, one moment at a time, a great deal more than I used to.
Bill

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chippydoo | @chippydoo | Mar 27 2:23pm

Thank you, Bill, for the encouraging and thoughtful words. I finally hit the acceptance button and realized that points that you laid out. I literally just got back from a mountain bike at a little trail network in SC. Looking forward to our flow and feature trails once I get home. The more posts I see on this site the more I am starting to question my treatment regimen. Gl-9 Grd-5 NonMet cancer and doing just Lupron and radiation. We don't have a NCCN facility in my region. Going to reach out to my insurance and see if I can get a second opinion at one of the two in the Midatlantic region. Thanks again for sharing a bit of your story.

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1 reply
vircet | @vircet | 4 days ago
In reply to @chippydoo "I was going to change from Lupron to Orgorvyx but haven't had anything higher than a..." + (show)
@chippydoo

I was going to change from Lupron to Orgorvyx but haven't had anything higher than a warm flash with zero sweats. My concern is Orgovys will trigger them. Rethinking changing. With high-risk cancer I might benefit from a slower ADT recovery.

Jump to this post

On my fifth day with ADT Orgovyx. No hot flash (yet), hope it won't be a problem for me.
For those who experienced hot flashes, after how many days or weekd on this medications did your first hot flash occur?

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4 replies
heavyphil | @heavyphil | 4 days ago
In reply to @vircet "On my fifth day with ADT Orgovyx. No hot flash (yet), hope it won't be a..." + (show)
@vircet

On my fifth day with ADT Orgovyx. No hot flash (yet), hope it won't be a problem for me.
For those who experienced hot flashes, after how many days or weekd on this medications did your first hot flash occur?

Jump to this post

Took about 2 weeks for me.

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rwski79 | @rwski79 | 4 days ago
In reply to @vircet "On my fifth day with ADT Orgovyx. No hot flash (yet), hope it won't be a..." + (show)
@vircet

On my fifth day with ADT Orgovyx. No hot flash (yet), hope it won't be a problem for me.
For those who experienced hot flashes, after how many days or weekd on this medications did your first hot flash occur?

Jump to this post

I am on Eligard/Lupron and didn’t have hot flashes for one month then they came on regularly, mostly at night so sleep was and still is interrupted. I bought a neck fan that I lay next to me and grab it when the flashes start. It looks like a headset and can be worn around my neck during the day - has been very helpful and is rechargeable - brand is JisuLite. Good price point. My neighbor takes Lupron and Erleada and has never had hot flashes after 2 years so maybe you’ll get lucky! He did say, however, his doctor said it was really unusual not to have them. Take care and best to you.

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rwski79 | @rwski79 | 4 days ago

Continued. ..Regarding the JisuLite in previous post, see picture below..also tried the Embr Wave 2, a wrist/watch type device that sends cool (wimpy) or warm waves to your inner wrist. A bit pricey, but may work for some people. It's used for hot flashes/menopause and touts also being good for men's hot flashes. Haven't noticed it does much after two weeks use, but does track the hot flashes on the app. Pretty remarkable about similarity of hot flash times/occurrences, day to day on the app. Would rather have it interrupt the flashes when I press the "on" side button, rather than knowing when I had them! There are several setting options so maybe I haven't found my "hot spot" . Again, the JisuLite neck fan is the winner so far in hot flash relief/convenience/price and style!
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