Hi All, I haven't posted in quite some time, reason being, I've been OK, .
Discovered I was mCRPC at 55yo on 10/2015, Taxotere, 10 rounds starting 3/2016 - 11/2016, Started Lupron/ Eligard 12/2016 to date. Xgeva the same. 30 day shots. Started 90 day shots on 1/2020 - to date. Started Zytiga and Prednisone on 4/2019 to date.
On 1/2020 Onco decided to give me a little vacation from Lupron/Eligard.
I would get a 30 day shot every 60 days. Everything else stayed the same.
Now here is what's bothering me. From Chemo to 6 months ago My PSA was always .01. However , after a few months of "My vacation" started, My PSA started going up .01 every month. It's now .08.
We both know it still a great number and a very small monthly rise, but we both know it's not a great sign if's on the rise. It shows that SOMETHING is happening.
Last month I got back on 30 day shots of Eligard and my PSA went up .01 last month too. Onco told me last month that , If in 2 more months my PSA still continues upward, even the small .01 a month, I will stop Zytiga and start Xtandi.
I just went to Onco last week to get my shots and he said that YES I will go on Xtandi next month. I asked him if we should still wait to use Xtandi and see what happens in the next 3-6 months and see if my PSA still rises, ONLY because my PSA is still very good, considering I could go up to 4.0 and I really don't want to use all my options of treatments up "UNNECESSARILY" and quickly.
I'm aware that it is kinda of gamble as well.
I definitely won't wait till my PSA goes up to 4.0 to change my mind!
What are you experts opinions? I'll take any opinions.
Thanks in Advance, Eric
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I am not a fan of so call "vacations" from ADT drugs. they only give the next cell lines a chance for a work-around. Stick to the zytiga and eligard. It sounds to me like you're doc is rushing you through all of the ADT drugs.
I would not wait till a PSA of 4.0. If after a clear progression over 3 or 4 tests should you move on to another ADT drug. Don't get pushed into xtandi, there are other drugs out there.
My Doc did explain that the cancer cells can , after time figure a way around the blockade! Sneaker Suckers!!! I do understand that.
I brought up to him, that maybe we should wait a few months to see where my psa will go since it's still very low. He agreed with me and said it was a good idea and was in total agreeance with me. I really do like my Oncologist.
I always bomb him with questions , He likes that and expects it from me. Likes walks in the room and says "What do you have for me today Eric.
Can you please suggest the other drugs you state, so I can research them and BOMB the doc with questions!
You could go to casodex. It's one of the older ADT drugs with fewer side effects. After that then ther is amplitude, Erleada, and firmagon to name a few. If you look up ADT drugs you can probably get a good list.
I am not sure about the progression of the "lutamides". I do know bicalutamide (Casodex) is the oldest and those that followed are more potent.
Yes, two things that I have been doing for decades is 5000 i.u.'s of vitamin D3 daily On advice from a doctor and lots of Japanese green tea.
However, over the years I taken many supplements, i.e IP6, essiac tea, and selenium + vitamin E to name a few. It is my belief that prostate cancer finds a work-around for supplements just as it does ADT drugs.
I sure wouldn't stop taking Zytiga being your PSA, 0.1, is still very low. I would ask for proof of radiographic progression before stopping Zytiga with such a low PSA. I would also wait until a clear sign is presented showing you are failing Zytiga.
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I second this. For MCRPCa, it's standard procedure to not change treatments based on PSA alone, especially at such miniscule levels. And when the time comes, I'd look at second-line chemotherapy Jevtana rather than another anti-androgen (see CARD trial). In this trial, the time to imaging-based progression was more than double with Jevtana vs. a second anti-androgen.
Thanks Fran, I asked for testing and he said it's so low that nothing probably would show up. He said we will wait and see what happens and if my PSA gets to 1.5, he will order scanning.
Congratulations on that great response to chemo and the continued response to Zytiga!
I think you are taking the wrong kind of PSA test. You are taking an ultrasensitive test that was only meant for men after an initial RP treatment. You should be using a conventional PSA test (lowest value= 0.1). The test you are taking is causing unnecessary anxiety and leading you to abandom treatments that are still working for you. Discuss this with your oncologist.
Please don't give up on Zytiga until your PSA reaches 2.0, you have symptoms of metastases, or a scan shows increased metastases. You might want to discuss switching from prednisone to dexametasone in the meantime. Sometimes this adds to the like of Zytiga. Email this to your oncologist and see what he thinks:
Thanks Tall Allen, I do have metastases. Changing to dexametasone sounds like a plan that I will present to Doc next visit. I still have my Port , so more chemo could be another option too. I tried to get the Xofigo treatment, but didn't qualify because my current treat did not fail, but that was almost 2 years ago. Thanks for all these options you suggest.
I did the switch over 6 months ago and it's worked for me. My doctor last week excitedly told me he had just switched another guy a couple days ago. Before me, he only had one out of 3 that it worked on. Over 2 years now on Zytiga.
Hi Eric, I don't have a scientific explanation here but to perhaps give you some optimism, I was diagnosed in 2003. I won't go through the whole story but through a lot of therapy (surgery, radiation, ADT, diet, lifestyle, and lots of stuff that you'd laugh at...) my PSA dropped to <0.01. It stayed there for several years and then about five years ago it crept up to .0.01 and then 0.02. I decided to watch it despite the angst. Long story short, without any additional therapy, today my PSA is <0.01. I'm not suggesting to do nothing but just supporting your positive attitude that you still have great numbers. Good luck!
Not at this point. After surgery I had a PSA rise, then I traveled to The Netherlands for a diagnostic that hadn't been approved here in the US, decided there was a chance to whack it with radiation (I sat on the board of directors of Tomotherapy), combined ADT with that, and my PSA dropped to <0.01. Several years later it rose and now it is <0.01 so I assume I am not metastatic if that makes sense?
You are undetectable at <0.1. Congratulations. The uPSA assay which you are taking is causing undue worry today. Keep Killing the little bastards. No holiday. Hammer down.
Eric this my unprofessional opinion but I I know that tall Alan knows from where he speaks I would go with that advice. I would go so far as to get a second opinion from a reputable oncologist at another location like a Cancer Center and I would say that they would give you advice to stay with the current zytiga treatment than switch right now. I'm a little Prejudice towards zytiga since I've been on it for 72 months now undetectable. This is Wings AKA Dan in SoCal
I think that below 0.2 you should not even be taking any drugs. I am 74. PC found in 08, Radiation therapy. I generally think drugs are temporary manipulations of your bodily functions and side effects should be minimized. I am stage 4 since 2012 and just finished a four year vacation from Lupron in which my PSA rose gradually from <0.1 to 35 in June. In resuming Lupron with Xtandi , five weeks later my PSA has fallen to 0.8 and it appears it will fall lower with Lupron & Xtandi and certain self-help measures. My scans, in the meantime, were not showing much until June. But I tend to agree with the vacation idea as long as scans are clean and pain is minimal or nonexistent. After all, things are developing and treatments are improving.
Thanks NecessarilySo, I am stage 4 since diagnosed. Oh how I wish I could have a lifetime vacation from Lupron/Eilgard !!!!! I can handle many of the side effects, except for the SWEATING. Its UN HUMAN like the way I sweat. It's not Hot Flashes I have, It's friggen RAIN, all the time!
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Should/Can I take zytiga/xtandi et al without metastasis diagnosis
Slow rising PSA. Wait and watch?
rising psa
Still on Vacation
RO said 6-12 months
