First PSA check after starting Firmagon
Getting my blood drawn tomorrow. Will be the first PSA check after starting firmagon on Aug 6, 2025. Last psa after prostatectomy was 2.6, which was not unexpected due to positive margins. I am however very nervous that the Firmagon wont work. What should my expectations be for tomorrow’s psa check? I don’t expect undetectable, but I hope a lot lower than 2.6. Thanks!!
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It takes a while, it WILL start dropping, unlike lupron that may spike the numbers and then lower, firmagin only lowers, my husband reluctantly started it in the spring and each time it lowered, from 285 he's now below 2... He also delayed taking zytiga but that helped too and he's almost done with chemo.
How is your husband? Doing ok with chemo?
The biggest side effect from everything was really the Firmagon shot, he didn't want to do it at first, but the tiredness, weakness and "manhood" part hit him the hardest, the Zytiga pills, just added more to it, but the Firmagon was the worst and then stomach pain for a day or two after the shot, he refused Lupron still...The chemo, he finished round 5 a week ago and is back at the gym, he's now getting tingly toes and fingers a bit, I think mostly in the feet, more tiredness this last week, nausea wasn't bad. Really the side effects were not bad at all, the funny part is the Steroids that last 48hrs, from the night before, he was the energizer bunny! then after 48hrs started "crashing" and getting tired, he's saying it's like the flu without the fever, just really worn out, plus twice now he's gotten hiccups from the steroids, the first time it was 3 hrs straight!
Overall i think he's doing great or at least he looks great, no sex life, but that's ok.....
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1 ReactionHi Jeff did your cancer eventually go CR and if so what next steps did you choose? I read you said your were on ADT for 6-years that’s fantastic, I just started 4-months in orgovyx plus zytega. I would be grateful if I don’t go CR for 6 or more years. Just had imrt for two lymph nodes, my prostate was proton radiated 3- years ago I had 3 cores G6, G7, G8. recent psma/pet showed no uptake in the prostate. So unfortunately I feel I have cells throughout my body because of the lymph nodes Mets, I’m praying for remission but being realistic. Anyway I hope your doing feeling well.
I’ve been on ADT for almost 9 years. Six+ years on Lupron And Orgovyx over 2 years since.
I became castrate resistant 2.5 years after starting Lupron. At that point I went on Casodex for almost 1.5 years and then Zytiga for over 2.5 years. I then switched to Nubeqa and I have been on it for about two years. It has kept me undetectable for the last 21 months. I have BRCA2, which is why it keeps coming back. I did have a metastasis in my spine zapped two years ago.
The fact is, staying on Zytiga and ADT can lengthen the amount of time that it can take before you become castrate resistant. They didn’t know that when I started Lupron years ago. Zytiga can be very tough. It caused me to have high blood pressure, which I take three pills for twice daily. It also caused me to have four afib events the last of which put me in the hospital for four days. I work with one guy who has had extreme fatigue from Zytiga, Got him, along with his doctor to switch to 10 mg of prednisone, which helped a lot. Zytiga Really increased the number of hot flashes I was getting, Since it’s job is to reduce testosterone below what ADT takes it down to.
I’ve had some strange things happen at the end of July. I lost 7 pounds in a few days and I’ve never been able to get it back. My blood pressure systolic, which had been about 100 for at least two years, has been pretty consistently 130 and above since I lost the weight. Had a bone scan yesterday and they found nothing. A PSMA PET scan won’t work because my PSA is undetectable. I’m having a CT scan Monday to see if it shows something. The median survival after becoming castrate resistant is two years, It’s been six years for me.
Good luck, Sounds like you’re heading in the right direction. Hopefully with the drugs you’re on now you can stay undetectable for years.
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2 ReactionsHi Jeff, how long do men stay castrate sensitive, on average, while on ADT + zytiga/abiraterone? Does anyone know yet
Thank you Jeff your a great source of extremely helpful information, grateful that you share your experience and knowledge. I was curious about the zap for the spinal lesion are ‘zaps’ one and done or is it a course of radiation treatment? I hope all turns out well with the upcoming scans for you.
I think the “zaps” are sbrt for about 5 sessions.
@johndavis60 was close. I had 3 sessions of SBRT on my L4. If it gets damaged my legs would not work. The metastasis was wrapped around my L4. They didn’t want to use a lot of radiation all at once so they used three sessions. It seems to have resolved the problem.
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2 ReactionsHere is the study that discussed using enzalutamide with ADT to delay, castrate resistance. There is also a study with apalutamide.
https://pubmed.ncbi.nlm.nih.gov/31329516/
They have found that Zytiga works similarly.
The studies are too new to find out how long they delay castrate resistance. Even with just ADT, some people can go as long as six years without becoming castrated resistant, but the average is 18-24 months..
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