We've got a decision to make and I'd value any feedback from you. My husband had HIFU 3 years ago and we hoped we were home free. PSA started to rise. We started on Firmagon and an Axumin scan found 3 local lymph nodes with PC, we opted for radiation to the lymph node area (thanks to Tall_Allen for the suggestion). Our first PSA test post radiation (we waited 3 months) just came back undetectable. We're not sure if that's the firmagon continuing to do it's job, or if the radiation treatment was successful, or both. He's been on firmagon since Feb 2019. His urologist says he is fine with us going off the firmagon to see what the PSA does without it. It's really the only way to know if the radiation worked. The urologist said he's also fine with us staying on the firmagon for a while longer... it's up to us. Since we're treading in new waters, there's no research or studies that I know of to help us make this decision. Your thoughts?
Go off Firmagon to see if radiation w... - Advanced Prostate...
Go off Firmagon to see if radiation worked?
You should ask your RO- not your urologist. You don’t want to compromise his treatment just to check.
Yes we are seeing the ro later this week. Will definately take his opinion to heart!
Agreed
It's very difficult for laymen like most of us to determine what to do. When I search Pubmed for articles on ADT + radiation for prostate cancer I find studies that looked at different patient groups based on Gleason score, on metastatic status (like your husband's lymph node metastases), on amounts of radiation, on length of time on ADT, and so on. Sometimes studies that appear to have very similar designs and patient characteristics get different results and there's no way to tell, at least from the abstracts, which study is applicable to your case or, for that matter, whether one of them was poorly done.
Even the doctors aren't able to tell. Your husband's urologist didn't know the answers either - though I think Tall_Allen was right in recommending a consultation with the radiation oncologist. He will have seen more patients facing this decision, read more about it, and have more educated ideas.
Based on studies that I've seen on non-metastatic cases, I think I would forego further ADT if the Gleason score is favorable (3+3 or maybe 3+4) and use ADT if it's higher than that. If the Gleason is very high (8-10), I think I'd want at least a year. If it's high intermediate (4+3) and I was very bothered by the drugs, I might settle for 6 months. But that's not a very scientific answer, is it?
I think your decision to radiate the lymph nodes was probably a good one, but the odds of a complete response aren't high. If the cancer escaped the prostate, it could very well be in other places too. So if your husband stops ADT and his PSA starts to rise (it can take a few months for the effects of the ADT to fully wear off), don't blame yourselves. The same thing would likely have happened with more ADT, it just would have taken longer to see it.
I know that didn't help very much. Maybe the best thing I can offer is to wish you the best of luck - which I do.
Alan
What was his psa before radiation
His psa had gone up to 7 after the Hifu. Bone scans and other tests showed nothing so we did the axumin. We went on firmagon and it went down to .5 and then he did the radiation so the .5 we know was in response to the firmagon. No psa tests were done during radiation. Post radiation was undetectable.
I always ask "to what extent is this going to inform your treatment decision"
This has helped me avoid lots of wasted sword motion in the past.
The question is why to continue Firmagon after completing radiation?
In my case of BCR The MO said I will have Firmagon monthly for total of 6 months with SRT to the prostate bed.
The reason is to attinuate cancer cells and sensitize them to get killed by radiation.
In my opinion if the radiation effect continue for few months which I don't know about, then continuing Firmagon for anotger couple of months make sense.
Ask you MO and RO about this, then make your decision.
Good luck!
I would consult with the RO. When had a BCR my urologist initially said “you only need radiation “. Going to Sloan Kettering they put me on 7 months of firmagon along wit radiation. I am GL 3+4 and last shot was July 2018. So far I am undetectable with normal testosterone since sept 2018. Next test is December
The radiation is history and the PSA will reflect whatever else is going on now. I gather from your post that, since the cancer appears to be "gone", you would like to see if you can escape the "big cancer machine" entirely. I doubt that it has gone - it's a mean beast and will hide for years. If you drop treatment, you need to replace it with something else - like a strict raw food diet during the transition as the immune system has to stifle any new growth. 9 out of 10 will fail (me too!) to do a real strict raw food diet - a list of what they are eating has the odd treat like a beer or two; bowl of ice cream; pizza, burger, sugar and milk in the coffee, etc. A proper raw food diet is hard work and finding organic veggies and fruit is even harder. But, the Internet has many people who did the hard work and got free. Bear in mind all the treatments permanently harm the immune system, so it takes months to get the immune system working again. It will never be "like new" again. There is a big learning curve ahead of you if you take that road, but you may stand a good chance because there are no "visible" bone mets. Good luck!
I had HIFU 3 years ago too. My local urologist, not the HIFU surgeon, recommended that I stay on eligard for 2 years. No thanks, besides how would I judge the success of the surgery? I've been off ADT for 2 1/2 years. My PSA has risen but not as high as your husband's. It was undetectable for a year following the procedure. I am waiting for it to increase enough to warrant an axumin scan. I wish your husband much success in the treatment of his lymph node involvement.
Thank you! And I hope you remain stable
Firmagone can remain in one's system for over 1 year after you discontinue use
We saw the radiation oncologist. Last week and they want him to stay on adt for at least two more years since his cancer was aggressive
I don’t see your profile. Please tell us his history of Psa, bx, tx, pathology etc.
He was diagnosed with Gleason 7 three years ago and we had Hifu treatment. Over the last two years the psa has continued to rise. Bone scan and Ct all negative. We elected to pay for our own axumin scan when his psa reached 7. It shows three local nodes lit up. Started firmagon in February and had radiation done on lymph node area this summer. Psa now undetectable. Dr wants him to stay on adt for at least two more years before going off it to aw what impact the radiation had
I switched to estradiol patches ( see my profile) which are a lot easier to take and easier on your body than standard ADT. Ask your doc about it.
Thank you anything at this point which is easier than firmagon would be welcome.
Show this to your Dr. : ncbi.nlm.nih.gov/pmc/articl...
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