hello,
I was diagnosed in march with a very aggressive and advanced case, with many skeletal lesions - high volume/high risk. I’ve been on degarelix/Firmagon and Abiraterone for the past 3.5 months and it seems to be working well - just had my 3 month scans. And the terrible fatigue is under control. Anyone else on these two drugs? What’s your long term experience been?
thanks
Robert
Have you de-bulked yet (RP or RT to prostate)?
I looked up de-bulking - no surgery planned in my future.
Everyone advanced PCa is different. Your prostate gland is apparently filled with cancer. Your metastatic so your prostate is shedding PCa micro timers into your system.
My view is to remove your prostate (surgically or via radiation therapy).
Hi - my husband's Dx is very similar to NewGame's - high-volume and lots of bone mets. De-bulking is not recommended for this situation. Treatment is systemic.
I had chemo and then radiation. Systemic then debulking. I thought it was the best approach two years ago. Now triplet therapy.
What is the use of that? The cancer is already out of the capsule and the cancer in the system is doing the same shedding. Once the drugs get hold, the prostate is also under control - until it isn't. But until then, why have all the SE's of an RP?
Then do RT. I did with minimal SEs. Then I had MDT to 4 Mets, ribs, iliac and para-aortic lymph node. Going on 2 years asymptomatic with undetectable PSA.
Of course you can do that. The cut off, here anyway, is five mets which I have. So no radiation. As well, my hip is full of it so the radiation would be big there.
The 2years I mentioned above is medication holiday
I envy you
Just saying, when I elected to radiate my prostate it wasn’t standard of care. Biopsy had shown 12 of 12 segments of my prostate were filled with G8 cancer. Even though I was metastatic I wanted it either removed or burnt to a crisp. I figured nothing good would result from allowing that lump of cancer to remain. Very glad I did it. I never bought into the once it’s metastasized out of the capsule it didn’t make sense to do either RP or RT
Everybody has their own opinion. I'm glad you are happy with it and I guess your SE's from RT were minimal.
I asked my surgeon if you find cancer in my lymph nodes during surgery will you continue with RP. He said yes he planned to take it out regardless 2017.He didn't find any affected lymph nodes at that time.
Later had five spots in pelvic all successful removed by whole pelvic radiation in 2019.
Recent scan in June 2023 showed one lymph node in pelvis. Will be scanned again in Oct to verify ureter not causing false positive. This lymph node is just outside of the original radiation field so can be radiated.
So I was very pleased to remove the mothership and stop any further proliferation of cancer from it. As my doctor explained. Cancer roots itself and has to grow in size before it will further seed more matastis. He said it doesn't behave that way.
Why not triplet? Was docetaxel precluded for some reason?
prostatecancer.news/2021/05...
oncologist really doesn’t believe there is research that proves adding docetaxel will increase efficacy any more than my current Abiraterone/degarelix combo. We’ve discussed this numerous times, and at my 3 month scan he said the results were the same as he would have hoped for if I was on a triplet regimen.
Might be worth getting a second opinion. I’m on triple therapy with multiple bone Mets after having RP that didn’t catch the rapidly spreading Gleason 10. My understanding is that triple therapy with Docetaxel is a standard for cases such as you describe. (also on Eligard, Nubeqa, and Zometa for bones).
I second maybe getting a second opinion on the triplet therapy. My husband's Dx was very similar to yours, and Dr. Baca at Dana-Farber in Boston recommended triplet for him. Lots of clinical studies showing increased lifespan. Triplet is now SOC for de novo, high-volume metastatic PCa.
My understanding is that Chemo works best on cancer cells that are multiplying quickly. If there’s no change in the spread of mets after 3 months then it sounds like your current treatment regime has rendered the cancer less susceptible to chemo intervention at this point.
Maybe not a terrible thing to have the chemo in reserve for later on when your current therapy becomes less effective, I’d guess. That’s become more of an ‘old school’ protocol since the studies on triplet therapy were released, but it doesn’t mean that it’s less effective in all cases.
I‘ve been on ADT plus Abi & Pred for more than 18 mos., post Chemo. And the fatigue is a real bear. I was pretty inactive before being diagnosed and the chemo didn’t make it any easier, so building more activity into my routine has been a real chore at 70 y.o.
You’re a bit younger and hopefully not as out of shape as I was at Dx. The research supports exercise as an important therapy for improving QOL and OS, so whatever you can do now in that regard will likely make chemotherapy less debilitating if you get it later on.
Advances in new therapies have been coming forward at a fairly good clip in recent years and hopefully we will both be around when one that’s more curative for Stage 4 becomes available.
Wishing you all the best along the journey!
Your doctor may be right. The analysis of the Stampede trial in 2022 about ADT plus abiraterone vs SOC showed a median overall survival of 72 months.!!
Hi I was DX Dec 2021 de novo Firmagon ,Abi Prednisolone No radiation chemo or surgery. PSA now undetectable last F18 Psma pet no bone or lymph uptake only suv 2.2 prostate but remember we are all different
I had same diagnosis in August 2018, but have only had Lupron since that time. Stable PSA, bounces but under 1 in late June.
I did major diet/consumption changes in July 2019 and started fiddling around with alternative things in Feb. 2020. Hard to say what's doing what.
I would recommend studying the Peace1 and Arasens clinical trials. The evidence that triple therapy extends OS is overwhelming. Best to you!
I was diagnosed in 2022 with Gleason 9, lymph node Mets and only one bone met. (Oligometastatic). I started on Eligard and abiraterone initially but then was changed to Nubeqa (continued Eligard) and started Docetaxel after getting my second opinions.
Tall_Allen encouraged me to push for starting triplet therapy after I got my second opinions. (Kaiser did not suggest this for me and wanted me to stay on abiraterone.) My outside second opinions recommended triplet therapy and fortunately my Kaiser MO agreed to stating me on triplet therapy.. After finishing chemo I had radiation to the prostate/lymph nodes/bone met. However, I understand why they would not do this if you have high volume disease. I’d definitely push back though and ask why they aren’t considering triplet therapy with Nubeqa instead of abiraterone.
Also do hard weight training. Without it your muscles will turn to mush with zero T and you’ll feel horrible. With it you’ll feel pretty good and you can even gain muscle mass. Numerous men on this site swear by it.
Schwah
Serious dating a special woman?........ MAN, GET A SECOND OPINION RIGHT AWAY...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 08/06/2023 2:58 PM DST
My case is very similar. 18 months now. But also did Docetaxel. There's a lot at stake here - some people have suggested triplet therapy. This is my experience as well. And the research seems to indicate from multiple trials that piling everything up at the beginning is a really good idea. May I suggest doing some reading on this. And inquire as well as to whether there are financial incentives to not do Docetaxol.
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