Lupron only after 4.5+ years

[dhccpa]

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.

[Magnus1964]

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.

[dhccpa in reply to Magnus1964]

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.

[Benkaymel in reply to Magnus1964]

Magnus can you elaborate on the long term SEs of radiation? Thanks

[Magnus1964 in reply to Benkaymel]

I have been battling urinary blockages for a long time. I have been self cathing for years. Urinary leaks, etc.

It's just a continuous struggle. My advice is to avoid radiation as long as possible, particularly for younger patients.

[Benkaymel in reply to Magnus1964]

Ok, so you're talking specifically about RT to the prostate. I had 6 rounds of 5Gy in March/April and so far thankfully no such problems.

[Magnus1964 in reply to Benkaymel]

The side effects I am speaking about are long term. I wish you all the best.

[chaplainj in reply to Magnus1964]

magnus, would this include SBRT. Thanks

[Magnus1964 in reply to chaplainj]

It would apply to any radiation of the prostate, external beam or seeds.

I have had salvage radiation to my hip 8 years ago with no problems.

[MJCA]

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.

[dhccpa in reply to MJCA]

Keep in mind my PSA is only low because of Lupron. I'm not sure I would wait until 4 to do something, but I appreciate your viewpoint.

[fireandice123 in reply to dhccpa]

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.

[dhccpa in reply to fireandice123]

Thanks.

[countrymusic101 in reply to fireandice123]

👆🏼👍🏼

[MJCA in reply to dhccpa]

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.

[dhccpa in reply to MJCA]

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.

[MJCA]

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.

[dhccpa in reply to MJCA]

I understand. I appreciate your input.

[London441 in reply to dhccpa]

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.

[dhccpa in reply to London441]

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.

But what PSA level is best to start?

[Wildfun44 in reply to dhccpa]

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.

[dhccpa in reply to Wildfun44]

Thanks. I'll see him tomorrow. He's resisted adding on treatments proactively this far, and I haven't fought about it. We'll see.

[Wildfun44 in reply to dhccpa]

How did your visit go with your doctor?

[dhccpa in reply to Wildfun44]

It went well. I gave him some info on BAT, and we decided to see what happens on next blood test. No changes for the moment.

[pilot52 in reply to London441]

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)

[maley2711]

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?

[dhccpa in reply to maley2711]

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).

[Ingress]

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.

[dhccpa in reply to Ingress]

Great outcome.

[Shamrock46]

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.

[dhccpa in reply to Shamrock46]

Thanks for your response. I hope you are able to find a solution.

[Shamrock46 in reply to dhccpa]

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!

[dhccpa in reply to Shamrock46]

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.

[Nfler in reply to Shamrock46]

what about lutetium 177 psma 617(Pluvicto), is that a possibility

[Shamrock46 in reply to Nfler]

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.

[Nfler in reply to Shamrock46]

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…

[Nfler in reply to Shamrock46]

have u guys tried adding ivermectin, Fenbendazole, turmeric and cbd to your regimen…?

[dhccpa in reply to Nfler]

I know that wasn't to me, but I do all that. Just didn't rush to mention it.

[Nfler in reply to dhccpa]

oh that’s great, keep up as much of the natural treatment as long as you can

[chaplainj in reply to Nfler]

do you take both ivermectin and Fenbendazole. Thanks

[dhccpa in reply to chaplainj]

Yes, fenben since 2/2020, ivermectin since 11/2020.

[Nfler in reply to chaplainj]

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…

[Seasid]

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.

[dhccpa in reply to Seasid]

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.

[Seasid in reply to dhccpa]

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?

[dhccpa in reply to Seasid]

I have at least three. Two on vertebrae and one inside right hip socket.

[Seasid in reply to dhccpa]

Are they still visible on the pet scan?

[dhccpa in reply to Seasid]

As of last scan, a CT in Dec 2022.

[chips1942]

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

[dhccpa in reply to chips1942]

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.

[Seasid in reply to dhccpa]

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.

[dhccpa in reply to Seasid]

Worth a thought!

[Juliejet]

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.

[dhccpa in reply to Juliejet]

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.

[Seasid in reply to dhccpa]

You could try Xtandi and see if you can stay on that. If you have any side effects you can switch to Abiraterone plus Prednisolone.

I agree that Xtandi is expensive, in the other hand you will not become dependent on Prednisone.

Xtandi is actually very kind on your liver. I agree that it could have side effects but you don't know until you try.

I would like to start with Xtandi but I agree it is a difficult decision to make.

The finish doctors did not recommend Abiraterone to our member Brysonal because they don't like that you have to become dependent on Prednisone.

Have a look at my post about the Taiwanese study (retrospective study about abiraterone and enzalutamide.)

[dhccpa in reply to Seasid]

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.

[Seasid in reply to dhccpa]

Maybe apalutamide or even better Nubeqa (darolutamide)? Brysonal is taking apalutamide as he can't darolutamide by NHS in England.

Maybe you are (will be) eligible for Nubeqa in USA?

[dhccpa in reply to Seasid]

No, I'm not. Plus it's too expen$ive!

[Seasid in reply to dhccpa]

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?

[dhccpa in reply to Seasid]

Yes, everything is on the table. I'm glad the Lupron has lasted so long by itself. I'm leaning on my doc to learn about BAT; I even wrote to Denmeade.

Gotta get out of the box thinking.

[Seasid in reply to dhccpa]

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.

[Seasid in reply to Seasid]

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?

[dhccpa in reply to Seasid]

What date was that? I'll correct it.

[Seasid in reply to dhccpa]

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?

[dhccpa in reply to Seasid]

Yes the Zytiga god is always towering above me. I'll see if I can edit it. Thanks!

[dhccpa in reply to Seasid]

OK, hopefully that fixed it. Someone brought that to my attention a year ago and I forgot to repair it.

[dhccpa in reply to Seasid]

No, if I said that, I was incorrect. I meant Lupron. Sorry about that.

[Seasid in reply to dhccpa]

I understand. Why don't you know if you have had only 3 or 10 mets? It is a big difference. Which scan said that you may have 10 bone mets?

[dhccpa in reply to Seasid]

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.

[MarkBC]

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.

[dhccpa in reply to MarkBC]

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.

Keep up the good work!

[Seasid in reply to dhccpa]

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.

[dhccpa in reply to Seasid]

I'm in Daytona Beach. PSMA is an option but won't change treatment as I've already had three Axumins scans. But if Medicare will pay...

[Seasid in reply to dhccpa]

I understand. It is not easy.

I would for myself try to find out how many mets I have and ask them what to do if I have only 3 mets.

Your PSA is still only 1 after so many years and you still have a Prostate and you are on ADT only.

Maybe they would come out with some options for you. Dana Farber cancer institute tried to cure one of our member like you. His name is darkenergy.

You could see his profile. I am not a doctor but maybe they could do something for you.

[Seasid in reply to Seasid]

Here is his profile:

healthunlocked.com/user/Dar...

[dhccpa in reply to Seasid]

I'll take a look at his profile.