I was diagnosed with multiple Mets in August 2018. Started Lupron Nov. 2018. Over the years PSA has bounced up and down from low of 0.5 in March 2021 to high of 1.4 in June 2020. Mostly stayed 0.6 to 0.9.
Ended 2022 at .67, but last two readings were 1.01 in March and .98 two days ago.
Never had RP, radiation, chemo, or other hormonal meds.
In deciding whether to start AA or chemo, or both, what are best guidelines generally? At what PSA? My last scans in December seemed stable, but we didn't run a PET scan as we have in other years, only a CT of lumbar and MRIs of prostate and pelvis.
Thanks for input.
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dhccpa
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You're still doing great, don't rush into anything.
If your PSA get past 4.0 go with another ADT drug. I'm not big on chemo and avoid radiation as long as possible. The long term side effects can be maddening.
Thanks Magnus. I know you have been down a long road. If I could duplicate your history, I'll pass 100(!), so I appreciate your input. Some say chemo isn't bad if you're in good shape, but we do have to worry about secondary impacts after the immediate success.
I wish my PSA was where yours is. A normal PSA range is 0-4.0. You have NOTHING to be concerned about. Plus, there are other therapies that your doctor would place you on prior to chemotherapy. Trust me, you want to delay chemo as long as possible. Please read the post I will do now.
The rule of thumb I’ve heard is to wait until the PSA rises 2.0 from its nadir before resuming treatment. However, my MO doesn’t wait that long before start new treatment. As soon as it’s pretty obvious that the rise is more than typical fluctuations we start talking about the next step. For my last vacation my PSA rose from 0.1 to 0.9 and he ordered a PSMA scan to try to figure out what was going on rather than simply resuming ADT. I’m okay with that approach.
And you’re lucky. Many of us on here have become CR (castration resistant) where Lupron ceases to work. You will more than likely remain on Lupron then go on a newer ADT drug such as Zytiga, Erleada, Xtandi or Nubeqa. To be taken in conjunction with Lupron. Your doctor may place you on a Lupron holiday to see what happens. You’re doing great. It’s always good to know what lies ahead. Please keep us in the loop.
I have been fortunate. But I live from blood test to blood test, like we all do.
I've read very negative things about Lupron holidays. But my understanding is that the next step can be either an second level hormone med or chemo. Some say best to do chemo first. Many here report little trouble with it, and others have tough time. It'll soon be decision time.
From personal experience - I have been fighting this mother 18 years. I was on Erleada 5.5 years until new SE occurred. I then did Provenge. I started Zytiga, but the SE bothered me. Waiting on my fifth infusion of Docetaxel next week. From personal experience, I would try a second level hormone therapy first. I had very good results from Erleada until it made me constantly dizzy. The SE from chemo, at least for me, are much more difficult. I would do everything you can to delay chemotherapy. That, of course, is just my opinion.
Side effects from chemo, like everything else, depends largely on your physical condition. I had zero sides from Zytiga, minimal from Lupron and Chemo. The stronger you are, and the better your cardiovascular health is, the better your odds of doing well- by far. I'm not suggesting you run to sign up for chemo if you're fit and strong, only that whatever your treatment choices you will almost certainly fare much better if you are.
Thanks. Yes, I believe I'm in good shape. Blood pressure, cholesterol, triglycerides all excellent. Glucose could be ten points lower, but OK. Walk three miles daily, climb stairs, do moderate resistance (not at your levels but regularly). Seems a very systemic treatment (docetaxel). AA is cheaper than ever.
agree with all your comments. I just completed chemo and am on Lupron and AA. I have had minimal side effects in general. Lost my hair, a little GI issue every now and then but that was about it. I continued to work full time and I think that helped me. But I try to keep in good physical shape too. Resistance 3x a week, swim, bike rides, play a little Basketball, etc. Had mastitis in my lung but now is "gone" after chemo. So will see how long it lasts but you can do this if that is what doc says.
You got that right brother! Plus we see studies emerge touting moderate to intense exercise and weight training...Blue Skies , Sky King and Penny (woof)
Are you unhappy with your MO's knowledge and advice, and willingness to answer your questions about the options??? Have you checked latest NCCN guidelines?
I am somewhat ambivalent about him, but not dissatisfied. I haven't checked on guidelines for starting a new therapy after being on Lupron 4.5 years. I know today folks are started on two or three therapies together, but I was not (my oncologist did not see me until I had been on Lupron for a while).
I’m not sure there is actually a “right PSA number” before doing something new. I didn’t start Lupron until the month before chemo with my PSA “only” being 1.15. When they found the those new mets the RO stated I needed to do chemo at that point. My was slowly rising every 45 days since radiation. So that’s what I did. Was chemo fun, no? Tolerable? Yes but it’s cumulative. Am I happy with the results? Yes. Non detectable since Dec 21.
My husband was originally dx in 2014 and had prostatectomy. 1st recurrence in 2018, started on Lupron and soon after added bicalutamide and care transferred to MO. Bicalutamide changed to Xtandi. PSA undetectable until early 2022 when 2nd recurrence began and SEs became much worse. Castration resistant. Due to cardiac issues and SEs he declined radiation, chemo, orchiectomy and other drugs. Xtandi reduced from 4/day to 3 to 2 to 1 and SEs still worse. PSA started doubling in low numbers each 3-mo. period in May 2022. All meds discontinued in January 2023. April 2023 PSA was 1.09. Just got July reading of 6.92. As MO said in beginning, the drugs work until they no longer work and PC outsmarts them. I have no doubt the Xtandi/Lupron bought us extra time but the SE price was too high. MO visit next week and we're anxious about what's next. I'm envious of those who have treatments w/o SEs and hope your choice works out.
Thank you but realistically prognosis is poor right now. We know his cardiac problems have made his care more difficult as well as his body's tendency to have more SEs than most. We've accepted that he's tired of treatments that just make him feel worse while his PC is relentless and more aggressive. We're hoping MO can provide some info about what to expect in next few months. We thank God that he only suffers from "discomfort" thus far (he refuses to say "pain") but want/need to be prepared. Carpe diem and make each day count!
I'm sorry. It does seem like other conditions interact badly with prostate cancer and the treatment. Although I've done relatively well, I too worry about long term effects of the meds on bones and muscles. So far other SEs except libido have been minimal.
No. Only chemo, radiation, orchiectomy and/or abiraterone/prednisone which would be very risky with his cardiac problems. He refuses all because he says he's tired of SEs and PC would only come back anyway. He's tired of feeling tired, weak and unwell. And no to your suggestions below as well. MO sent portal message yesterday and seems annoyed that he's stopped treatment and suggested we stop testing PSA. We see her next week and based on how that goes we may switch to an MO closer to home & hospital we use for a 2nd opinion. Thanks for trying to help.
yes switch your mo. Though I’m early in my diagnosis, I stopped orgavix, abi n prednisone after 7 months n started ivermectin at 15 mg daily 4/ days a week. I initially loaded up at 40mg every other day for six doses and my psa is steadily going down from 6 to 1.5 now. I feel so much better wo all the side effects…
I’m taking all mentioned above except fenben but looking to attain n try some soon. The cbd isolate which has no thc has really helped w inflammation n pain management, highly recommend…
If your PSA is stable around 1 you shouldn't worry too much. I would ran a PSMA pet scan if the psa start to rise quickly.
I am polimetastatic. My psa doubling time was 3 months and the psa was 1.25 when I had a PSMA pet scan with investigational CT with contrast.
I had only on the PSMA pet suv Max 14 in my prostate and made a decision to irradiat my prostate with MRI guided Linear accelerator 38 Gy. After 6 months my psa dropped from 1.4 to 0.23. Now, 7.5 months later after the irradiation of my prostate my psa is 0.25.
I am like you living from one blood test to the next.
If your PSA start to rise and goes above 1.5 you should consider the PSMA PET/ investigational CT with contrast in order to make a proper treatment decision. If you have only a local spot you could consider sbrt of that spot and to delay global treatment like chemotherapy. You should not overreact if your PSA doubling time is low. My way 3 months so I had to make a quick decision. Hopefully you will not have visible distant mets.
Thanks. I don't think a PSMA would change my options at this point. I've had several Axumins, but never had any treatment except Lupron. I have 3 or more bone Mets.
Where do you have your bone mets? Are they visible now? I don't have any on the PSMA pet scan visible bone mets now, but I had them visible on the nuclear medicine bone scan and on the PSMA pet scan before starting Degarelix.
Are you only oligometastatic? If yes you may be curable?
Seriously consider a PSMA PET/CT if your PSA reaches the the mid 1s (1.5). Most of your future decisions will be based on the location(s) of your PCa. Treatments will be guided by location, location , location. Best
Thanks. I will have a PSMA scan one day but having one now wouldn't change treatment. I haven't had second level hormone therapy or chemo yet. And no PSMA in my area just yet.
If you want you could come to my RO in Sydney to SBRT your mets and prostate and you could be cured? You could also have the PSMA PET /CT in my hospital. You will be plesently surprised how cheap is all of that in Australia.
When my husbands PSA started to go up while on Lupron Xtanti was added and the combination brought it back down! My husband has been on Lupron for 6 years and Xtanti for 2.
Thanks. I'll probably go with abiraterone acetate (generic Zytiga) because it's cheap. Xtandi is too expensive, and there is no clinical trial comparing the two's results.
A lot of folks on here take AA with Pred with no problem. Others take Xtandi with mucho problems. Sometimes vice versa. But I hear what you're saying, my friend.
I just hope for myself that Nubeqa will be available for me here in Australia if I delay the progress of my cancer long enough. Since 1/6/2023 apalutamide is available here in Australia as far as I know.
I belive in the future more drugs will be available. We will see.
I fully understand that cost is a concern for me and others, otherwise I would plan to get Provenge.
Do you have any plan to get provenge at some point in the future?
Two years ago in your post you said that you are on Zytiga. In this title you are saying that you are on Lupron only for 4.5+ years. Could you please clerify? I believe that it is great if you are on Zytiga.
You wrote : "I am metastatic, at least 3 or more mets to ribs, vertebrae, and hip. Zytiga has kept PSA just under 1 since 2018, so i am not castrate resistant." Maybe you just made a mistake?
It was in your post :"SOC standard info on starting Xgeva without bone issues."Maybe you have been considering Zytiga and it was in your mind that time?
The initial PET scan showed that I had UP TO ten Mets (apparently 5 or so were subject to judgement), enough to exclude me from radiation. After years of using Lupron, only 2-3 are now visible. But you know those little buggers (and other even littler buggers) are lurking there.
I was diagnosed stage 4 with a few mets in June 2018. I did chemo right away. My MO said that early chemo is best. The scientific data demonstrates that. As well, it is easier on your body when you are younger and healthier. It wasn't as bad as I expected and, with ADT, it really knocked my cancer back PSA 103 to 0.17.
I stayed on only ADT for over 3 years. After 2 years my bone mets were no longer visible on scans. When my PSA hit 1.0, my MO added bicalutamide which reduced PSA for about 9 more months.
When my PSA reached 1.0 again last September, we added abiraterone which has reduced my PSA to undetectable. My bone mets remain not visible on scans.
My MO is hoping for a few years of success with abiraterone and, when that stops working, it's possible we may try docetaxel again because I had such a great response the first time around. All of that depends on what the science tells us is best.
You and I are lucky that we have both done well during the last 5 years. Let's hope it continues.
Yes! That's a great outcome. I may push for chemo. My MO is conservative, an "if it ain't broke, don't fix it" man. But I'll mention tomorrow when I see him.
I suggest that you get a PSMA PET-CT in order to make a proper treatment decision instead of jumping just now into chemotherapy without knowing where your cancer is at such a low PSA with which you could live for years. I really wish to help you.
The other possibility is to fly to Boston and consult with Dana Farber cancer institute oncologist or some other centres of excellence. City of Hope with Tanya Dorff would be also great. Maybe you should let us know where you are and people will give you recommendations about an Oncologist.
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