Treatment plan at Mayo after PSMA scan - Advanced Prostate...

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Treatment plan at Mayo after PSMA scan

jjpeabody profile image
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Moving forward toward SRT at Mayo after PSMA found intense uptake in surgical bed at left/posterior aspect of bladder. Radiologist is ordering MRI and Lupron after 2 weeks of casodex and will drop casodex after 4 weeks continuing Lupron for 6 months. The ADT approach sounds a little weak to me. I was thinking adding zytiga too for the 6 months. Any balk park estimates on 6 months zytiga (per mnth) with Part D Medicare, or reasonableness of treatment plan. Thank you, Jim

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jjpeabody
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25 Replies

I would secure the services of an oncologist to prescribe drugs for you. Also, I question (I'm old school) why you would stop taking Casodex if it's working. I did very well on a combination of Casodex and Lupron for nearly four years. I didn't start Zytiga until I became castrate resistant. Zytiga is presently working extremely well for me. To repeat I'm old school and don't believe you need a 6 pound hand sledge to drive a nail.

jjpeabody profile image
jjpeabody in reply to

That was my impression also, keep casodex with Lupron for maybe 12 months to fortify against microcancer cells. Or even add zytiga too for a more intense shot at a lasting cure if insurance will cover and I can afford. I told them today I would be doing additional research on ADT and possibly see medical oncologist re ADT for SRT. Thanks for your reply, Jim

in reply tojjpeabody

I think you have a very good overall plan. Please let a Medical Oncologist help you decide. Good luck to you.

dhccpa profile image
dhccpa in reply to

I don't know why, but it's common for the MO to begin casodex prior to Lupron, then drop it a few weeks after starting Lupron.

How long has Zytiga worked for you?

in reply todhccpa

The Casodex is added because lupron/eligard cause T flares ie a rise in testosterone. The Casodex is an anti androgen so it blocks the T from binding to the pca. After a month the T flare is over so Casodex is no longer required.

I'll leave it to others to debate the pros/cons of long term Casodex.

dhccpa profile image
dhccpa in reply to

Yes sorry the long term use of casodex was what i didn't know about, although I knew things were done differently outside USA.

in reply todhccpa

I know eventually the pca starts feeding on the casodex. Some do well for quite awhile...I think magnus said he was on it for 5 years...others get maybe 6 months.

Tall_Allen profile image
Tall_Allen

The ADT is just there to help the radiation work better. With your low PSA, GS7, and knowing that the cancer is in the prostate bed, the question I would be asking is why you need ADT at all? It hasn't been found to confer any benefit when the PSA<0.7:

redjournal.org/article/S036...

jjpeabody profile image
jjpeabody in reply toTall_Allen

Thanks as always for your support. After reviewing all these posts, studies, and Dr opinions, with still more research to look at, it was my gut feeling that ADT with even Zytega would help ensure any leftover microcancer would be eliminated increasing my chances for a permanent cure. Sadden to see the many people having recurrence after SRT. At least it sounds like given my profile you feel SRT is a good choice for me despite moderate incontinence after 2 years (in a prior post you suggested 7 months of ADT prior SRT would allow incontinence to further heal...?...after 2 years, that would be welcomed).

Also if I may while you are here, l have Osteopenia and what is your best med bet for combating bone loss, and assume bone loss does not correct after stopping ADT. Thanks so much, Jim

Tall_Allen profile image
Tall_Allen in reply tojjpeabody

The nice thing about sites like this is the camaraderie one feels from being with others who understand what it feels like. The downside is that one hears all the exceptional horror stories, and worries if that could be you too. I'm not a fan of making medical decisions based on gut feelings - they are usually wrong.

I apologize for suggesting to you 7 months to allow tissues to heal - that is for men who are having adjuvant SRT, not for men who have already waited 2 years. While some continence recovery may still be possible, I don't think time on ADT will do much for you. In fact, I think you should count on SRT making urinary problems worse. Perhaps an artificial urinary sphincter is something to consider.

Tall_Allen profile image
Tall_Allen in reply toTall_Allen

Weight-bearing exercise helps keep bones strong. Prolia is sometimes prescribed for men with osteopenia without bone metastases.

jjpeabody profile image
jjpeabody in reply toTall_Allen

I appreciate your posts, the comaraderie here, successes and hardships, studies, and other info. I'm simply, or not so simply, just trying to understand and make the best informed decision I can and appreciate your support. Thanks again, Jim

in reply tojjpeabody

If we don’t advocate for ourselves, no one else will. Save yourself any way that you feel fit .

jjpeabody profile image
jjpeabody in reply to

More good and timely advice Lulu700, Jim

GP24 profile image
GP24

You do not need ADT after SRT. However, to be on the safe side I would take Lupron for three or maybe six months. Adding Zytiga would be overtreatment.

jjpeabody profile image
jjpeabody in reply toGP24

Thanks GP24, it sounds like you agree with the treatment plan at Mayo for my profile. I appreciate your support. I was doubting this initial treatment plan, but it is a relief to see that the Dr.'s decision is in the ballpark. I have Osteopenia, for future reference do you have a best med for bone loss. Thank you, Jim

GP24 profile image
GP24 in reply tojjpeabody

There are studies which show a benefit for adjuvant ADT after SRT and other studies which do not. I think after SRT you are in a situation in which you will never be in again. So if you get a recurrence you will think: I should have got ADT after SRT. But you will not be able to correct this. Therefore I would get the ADT to be on the safe side, even if you may get away without it. But you will only know that, when its too late.

My favorite to stop bone loss and even improve this are estradiol patches which your wife used when in menopause. She also had to avoid Osteopenia. This will even mitigate the side effects of ADT.

in reply tojjpeabody

I’m on prolia . Also get some simple bone nutrients as well .

jjpeabody profile image
jjpeabody

Great post GP24. I have been on phone this morning scheduling MRI, Lupron shot, and even CT Simulation (but Dr. and I agree this is tentative pending second opinion with Medical Oncologist). My last hurddle is the incontinence issue with SRT, at 1-2 pads 2 years after RP an artificial shincter operation seems maybe more than I can deal with, but who knows. On the other hand Medical Oncologist already has recommended zytiga with ADT for 1 yr with SRT and I will likely go with that, but he also goes beyond that to believe PCa has already spread beyond bed but nothing to support this yet. I am seeking today a second opinion with another medical oncologist who i believe to be top Medical Oncologist at Mayo to see what a ADT hormone only plan might look like in terms of longevity and severity of side effects. Thanks again GP24, Jim

MateoBeach profile image
MateoBeach

The weight of evidence does suggest that ADT added to SRT is beneficial. The high vs low PSA level makes it less compelling for you. But it still probably has some effect in preventing PC cells from recovering from otherwise sub-lethal radiation hits. That is my intuitive sense. I was in the same situation with SBRT for PLNs and low PSA. I decided on 6 months of ADT. A year out and my PSA is very low but not undetectable (0.08). Perhaps should have done a year? Unknowable. I used Firmagon with estradiol patches. No bicalutamide needed as there is no flare.

Prolia is also a good idea for future bone protection. May make bones less susceptible to metastatic invasion.

jjpeabody profile image
jjpeabody in reply toMateoBeach

Yes, it is my opinion that after reviewing a lot of post, articles, and interviewing doctors I will be at least using lupron and Zytiga for one year due to chances of micro disease. According to a PSA result in 11/2020 my PSA jumped by 50% in 1 month to 0.19, really needed another follow PSA to confirm PSDAT but started casodex and held off on lupron for my PSMA Pet scan. While moving forward toward SRT really concerned about incontinence so I will be seeing med oncologist re ADT only plan and maybe urologist re artificial sphincter and general incontinence befor CT Simulation if that's how it unfolds. Thanks for sharing your relevant experience + got to love that Oregon and PNW!! Jim

MateoBeach profile image
MateoBeach

Note that being on ADT for a limited time such as one year with SRT is not likely to lead to you becoming castrate resistant. Whereas long term continuous ADT for life invariably is expected to lead to castrate resistance and the long downward spiral that ensues. This is the time for optimal chance for cure. Good luck

jjpeabody profile image
jjpeabody in reply toMateoBeach

Thanks again MateoBeach and best of luck to you going forward, Jim

Good luck Jim. Mayo Will care well for you Jim ..

I say congrats on Mayo .

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