I am repeating some things here that were in other posts, however I do have a new question for the group.
Started my journey in Oct of 2023. Diagnosed with prostate cancer via MRI and then Biopsy. Further diagnosis via a PET scan showed PSMA uptake in Pelvic lymph nodes and in Periaortic lymph nodes.
Immediate shot of Lupron and quickly was also put on Abiraterone.
Then 28 round of radiation to pelvis and 3 round of SBRT to periaortic.
During all of this the MO changed my dosage of Abiraterone to 750 MG along with 5 mg of Prednisone to help with Blood Pressure control.
The passage of time.
At about 3 months after radiation a follow-up Pet scan found no PSMA uptake on the prostate gland and no uptake in the Periaortic nodes. There was 1 remaining pelvic node that had a very low uptake. MO noted that the Cancer "was well under control"
The passage of time.
All PSA since Dec of 2023 have been <0.04 and testosterone has been <7.
Based on this date is the dosage of Abiraterone ever reduced even further to say 500 mg?
I had a follow up last month with the Nurse Practitioner at he Cancer center as my Blood work was all good.
Next follow-up will be with the MO and will be at 1 year of Lupron and Abiraterone. My intention is to not ask in any way for a vacation, but i want to investigate that along with my 3rd Lupron shot, can i go to 500 mg of Abiraterone and same 5 mg of Prednisone.
Has anyone done something similar and were the results favorable or is this just wishful thinking to help reduce side effects?
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You can always reduce side effects by reducing dose, but you also reduce effectiveness. While even Lupron alone will probably reduce PSA for a time, one survives longer with abi. It sucks that you have to decide between survival and drug side effects, but that is the only choice you have.
Thanks for the response, as usual you are correct on your assessment. However I will probably have to make a decision at some point in time Heart problems/disease, or Prostate issues. I am not really sure which will be worse.
In closing, Thank You for your honest posts. I do think there are a lot of Warriors out there that heed you advice and counsel. Please continue to be our Advocate.
Allen says it plainly. But why "reducing effectiveness? Let's explore.
Consider that the Abiraterone has to inhibit every CYP17 enzyme where ever it is found in your body, including in the testes, the adrenals, etc. CYP17 enzymes are the target of Abiraterone because they the key to a critical step in how our bodies turn cholesterol into testosterone.
That means that your ingested Abiraterone molecules have to travel around everywhere in your body - even where there are no CYP17 enzymes. (I don't think there is an address book.)
So in terms of "pharmacokinetics", you need a certain number of Abiraterone molecules to ensure that for 24 hours, every CYP17 enzyme is found and then jammed up.
And if you add up all those molecules together, you get 1000 mgs of Abiraterone (must be a lot of molecules!).
And it doesn't matter if you are fat or thin or tall or short. Many body systems are similarly sized, regardless of overall human body size or weight. So, you either have enough Abiraterone molecules buzzing around everywhere in your body, including at every CYP17 enzyme Iocation, to do their job of inhibition, or you don't.
If you don't, some CYP17 enzymes won't be inhibited! In that case, you'll be back in the testosterone business! Maybe not full-on. But your don't want to be in the testosterone business at all.
Think of painting a room in a house. And a certain room needs one can of paint to paint it. So if you have one can of paint, you can paint the room. If you have only 1/2 a can, you won't be able to paint all of the room. And if you paint it anyway, you'll see the old wall you wanted painted still peeking through, in unpainted spots or where your coat of paint is very thin.
(Any corrections on this lay explanation are welcome, of course.)
Thanks for the response. I did like your explanation. I do think there needs to be adequate amount of Abiraterone in ones system to provide it's effect.
It does appear that the 750mg I have been taking is doing what appears to be an adequate job, as indicated by the PSA and T indicators. (we will never know if the 1000 would have done better, however the indicators of PSA and T would be the same)
I am not sure the MO will go for a further reduction, however my intent is to at least have that discussion.
"... i want to investigate that along with my 3rd Lupron shot, can i go to 500 mg of Abiraterone and same 5 mg of Prednisone... is this just wishful thinking to help reduce side effects?"
What are the side effects, and might they be from the Lupron and Prednisone rather than the Abiraterone? I am on Orgovyx instead of Lupron, and 1000 mg of Abiraterone with 10 mg of Prednisone. I don't have any objectionable side effects except thin easily torn forearm skin, and think that is from the Prednisone.
I'm on Firmagon/Degarelix (injected) - both that and Orgovyx/Degarelix (oral) are GnRH antagonists. Whereas Lupron is a GnRH agonist. I deliberately stayed with the antagonist.
Really the only bad side effect from Lupron/Abiraterone/Prednisone is high blood pressure. I wore the socks for a few months, had some fatigue and muscle loss, but in the end increased exercise and diet have kept the rest of the prostate meds side effects at bay.
Now lets talk about the side effects from the increased number of and increased dosages of Blood Pressure meds. No sense boring you with them, but i know if my BP went down from decreased Abiraterone, I could reduce the BP meds and reduce the side effects.
PSA and T numbers are and have been good for over 9 months. I year is in October.
Completely understand your thoughts and hopes to minimize side effects - a goal we all share. Unfortunately, most or all SEs you’re experiencing are likely from low/no T induced by the Lupron. Personally experienced no change in SEs (relief or worsening) after Abi was added to ADT. MO prescribed it when trials completed indicating hormonal therapy efficacy may be better or last longer with the addition.
Really the only bad side effect from Lupron/Abiraterone/Prednisone is high blood pressure. I wore the socks for a few months, had some fatigue and muscle loss, but in the end increased exercise and diet have kept the rest of the prostate meds side effects at bay.
Now lets talk about the side effects from the increased number of and increased dosages of Blood Pressure meds. No sense boring you with them, but i know if my BP went down from decreased Abiraterone, I could reduce the BP meds and reduce the side effects.
PSA and T numbers are and have been good for over 9 months. I year is in October.
Aah yes, somewhat elevated BP was the one SE directly attributed to Zytiga (and later resolved when stopped). It wasn’t severe for me, and we managed it by manipulating the concurrent prednisone dosage (3, 5 and 10mg) rather than Abiraterone. TA has described in other posts an alternative steroid to prednisone that you might consider with the Abiraterone; see if that does anything.
I imagined the SEs concerning you were fatigue, muscle loss, weight gain and ultimately cognition/depression. Kudos if you have those managed, and good luck chasing down the solution for BP issues!
Have you considered intermittent ADT? There are lots of studies that support taking a temporary "holiday" from Lupron. Might be worth a Google search...
Yes I have considered it, but would prefer to have things manageable long term, as I did not have an RP and will most likely need some medication to keep the PCA under control for a long time.
I feel like I’m going to be on these for the rest of my life and “ oh well suck it up” if you want to buy some more time ? How about a feel good story on here where one did the program with the Radiation , got the undetectable notification and was told he could stop all medication and is living his old self again ??
Generally, those MANY folks are not participating in this forum!!! Or any forum!! The 10 yr PCa -specific mortality rate is relatively VRY low compared to most cancers.
I had prostatectomy in Jan 2019. PSA started to rise and got Lupron, Abiratirone (1000mg), & 5mg Prednisone in August 2020. ALT & ALS went up in Nov 2020. Doc lowered Abi to 500mg and have been on it since. PSA went to .01 and has stayed low since then. Get bloodwork every month to keep on top of it. Just holding the fort. Did have a small spot (PSMA/PET scan) on T11 which was radiated in Feb 2023. Just hanging on and watching bloodwork now.
Ok, I guess I am asking why you had radiation. i.e why have a scan in the first place that found the spot? Glad it was found but your PSA is undetectable so why the scan? Btw, I saw Dr Jorge Garcia at CC in 2017.
My first scan was right after the biopsy. Prostate, Pelvic lymph nodes and some up higher in the Periaortic region all lit up.
28 pelvic radion session and 3 SBRT on the periaortic region later i was done with radiation.
3 months later the 2nd scan showed no uptake in the prostate, and periaortic area. All of the Pelvic region were dark except 1. Its uptake was 16.3 in the first, and 2.5 in the 2nd.
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