I'm metastatic HSPCa on Lupron/Erleada over two years now. Three periaortic lymph nodes and two ribs lesions. Sooner or later, I will go metastatic HRPCa (average about 3 years to become hormone resistant). So, my question is what kind of treatment coming next
Thanks for your input
We are learning new things every day. Ask that question when you are ready for the next therapy.
Such a lack of empathy on your answers. This is not the army or anything like that. You sound like you are tired or bored from saying things over and over. Our questions are valid and deserve a bit more of a tact. Remember, most of us are on ADT and therefore a lot more sensitive. No longer as MACHO men as we used to be.
Nailed it!…
That's a bit harsh. I agree his bedside manner is not the best but he has a point here. I thnk his advise is good. Wait and see what is available when you need it. You may be HSPC for many years. I am at six and just now seeing a PSA rise.
You are doing real good with GL 5+4 and HSPC for six years. Mine pathology report after RALP in 2013 was 4+3 with tertiary 5, and cancer came back within 6 months, rising PSA and doubling less than 3 months.
It was excellent response that should give you hope. I won't bother you by responding to any real concerns in the future.
Wowl what a response. You are going to 'punish' me! Do you keep a black list with names of people who are not in 'good Standing in it?
Thanks for the suggestion!
Doesn't AMGEN have a promising trial for a new immunotherapy drug?
Tons of promising trials for all kinds of situations! The problem is that over 90% of Phase 2 trials are ruled out in Phase 3.
T A may I ask you what do you think about BAT therapy
It's still in early tests, which have on the whole been disappointing to me. Only 30% can benefit, and that benefit seems limited to longer time on Xtandi. OTOH, about ¼ see their cancer spread much more quickly. It is unsafe to do outside of a clinical trial. Here's the data so far:
prostatecancer.news/2016/09...
Always appreciate your input.
Hi,
I was on the same treatment path for 5.5 years. I stopped Erleada due to a new S/E, not because I became HR. There are other meds in the same class; you may be able to switch to one of those. And as Allen says, new meds and therapies are always coming to the arsenal to fight PC.
Of course. Initially I had a lot of stomach issues. I also got a freaky dermatological issue called erythema multiforme that landed me in the hospital and I was quarantined. Then after being on the med 5.5 years, I started feeling dizzy all the time. I mentioned it to my PCP he said to hydrate more. That didn’t work.
I told this to my MO. He told me to stop the med right away and I needed an MRI of my brain. My doctor told me that in very rare occurrences Erleada can cause bleeding in the brain. The MRI confirmed two things: 1. There was no bleeding and 2. I DID have a brain! After ceasing Erleada, the dizziness went away.
I had to reduce dosages of Erleada and my vertigo went away, still non detectable 3+ years. Excercise
MJCA thanks. I had to reduce Erleada to 120mg instead taking 240mg because SEs. Did you took 240mg during 5.5 years
Hi. No dosage change. Once the dizziness started, my MO removed me from the med.
So are you still on Erleada? I actually had the prescription changed to the old 60mg pills instead of one 240mg in case husband needed to adjust dosage but so far so good at the full dose (though it’s only been 4 months). We are going to ask PCP next visit about getting a low dose estrogen patch for hot flashes and bone health. He’s to get the Prolia shot too. Taking all these strong drugs is scary but I guess cancer is scarier!
My husband is still hormone sensitive after almost 7 years. New treatments arise- I've been 'keeping notes' (searching here and asking his oncology team) in case he becomes HR for 6 years and am always adding to my list. I learned to also keep my eyes on HS treatments that come up since those can also be used after HR- some here have re-sensitized their cancer with chemo or other means or used these treatments in other ways.
You'll drive yourself round the bend thinking like that. Accept where you are and accept the fact you don't know for sure what comes next. Some men on this list have lived with advanced prostate cancer for 20 years. Enjoy what you have, build better relationships now with the people you really care about.
I got your point. I'm just asking questions to know what's my options. In 2013 had RALP done, later find out my prostate was removed in two pieces and SVs left inside, one SV was already with cancer. Surgeon had thousands of procedures done. Later I find out, because of my large prostate (130mg) open RP should be done.
Embrace the moment and every day that the mets remain the same size and in the same place. 4th year on Erleada/Lupron with the usual side effects and mets in the belly, but with no changes and I'll deal with the new treatments as I need to use them. I try to deal with it this way, so far so good
I would consider SBRT. If you see mets on PSMA PET Scan then kill them.
Did you ever take any drug vacations? Our MO mentioned doing that after two years but we will see as it’s only been 4 months on this same protocol.
June 2014 Lupron for 18 months. Vacations from 2016 till April 2022, than Lupron/Erleada till now (over two years). Looking for a break from ADT. My MO said PSMA scan next and we will see , if no progression maybe go off meds
I decided not to as the side effects have been tolerable, the biggest problem being the impotency and lack of sensation/drive “downstairs” as all of the nerves were removed with the entire prostate, but it’s been 4 years and still counting. So far so good and the man said to every floor after he jumped from the 57 storey building!
That's the tough one to decide.
I like your comparison. Advance PCa is like jumping from the building. It's exactly like that.
Some hospitals offer very limited options, others might offer you a good number of methods to attack the metastasis. Metastasis are what kill you in the end, kill them first if possible and prudent.
I am NOT doctor It is NOT medical advice.
I think first goal is to understand PSA doubling time and its depend on it. most of time once you become hormone resistant next goal should be systemic therapy.
if you have mets less than 5, I think SBRT is good place to start. Also talk to your MO for systemic therapy that has min or zero side effects,.
While some doctors may think so, 5 mets is not necessarily a cut off. It once was 1 then 3 then 5 so we get better all the time at treatment, Keep at it.
100% Agree
I'm 81 years old and also on Erleada and Eligard. My first experiance with PCa was in 2010 when my PSA was 4.87. My Gleason was 8 (3+5). After a talk with both my Urologist and the Radiation Oncologist it was decided an RP was the best option. One of the first things they told me was you'll talk to a lot of others who have had this done but just remember, you're you and they are them. We all react to these things differently. Two years later my PSA was advancing slowly and when it hit 0.2 I had 28 sessions of radiation. My PSA stayed undetectable until 2018 when it began a slow upward movement. When the doubling rate advanced in less than 6 months to 2.0 in 2022 I had a pmsa which showed some para-aortic lymph nodes lite up and I was started on ADT after which my PSA is now undetectable. Yes it erased almost all my body hair and somewhat changed the texture of the hair on my head along with some increase in my breast size but I feel great. Still do things like changing oil in our motorhome and playing with my Mustang. At 81 some of the normal advancing age things can be misinterpreted as side effects as well. I do moderate exercising on a stationary bike and dumbbell weights and in the words of Clint Eastwood "I don't let the old man in". Life is what you make it. In my case I feel reading to much about possible side effects can intensify any that may be there.
If you want to try an experimental option like in the STEP-UP trial you must find a MD who is willing to work with you, that can take some time.
What is STEP-UP trial. All I can find is "A Step-up Approach or Open Necrosectomy for Necrotizing Pancreatitis"
pcf.org/c/how-bipolar-andro...
You alternate between high levels of T and very low, in my case three cycles of T, then 6 weeks of low using Darolutamide.
I ask my RO couple of years ago about BAT therapy. He was skeptical, said my PSA would go right up. I will discuss BAT with my MO at the next appointment
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