PSA tripled in the last 30 days (but still extremely low), after doubling in the prior 3 months.
I was diagnosed with stage 4b (mets in multiple bones and nodes) ductal and started ADT 13 months ago. Nubeqa and Docetaxel (Triplet therapy) started 9 months ago, and finished chemo 4.5 months ago. Still on Lupron and Nubeqa.
Most of what I've read on doctor google says mCRPC takes 2-3 years to develop. Is that accurate in the group's experience.
Am I just "lucky?" LOL
I'm just completely bewildered in how I've gone from no indication of cancer 18 months ago to where I'm at now. I know ductal type PCa is considered very aggressive, but this just seems so fast compared to most people's situations.
We hit a "good remission" after the chemo according to my MO, but PET scan last week showed new/incrasing activity in my Prostate gland and near the "gastrohepatic ligament."
My MO is suggesting Provenge if my PSA continues to rise (recheck in November) and possibly palliative radiation for a met in my hip that might be causing pain. She says the data shows radiation to the prostate isn't really beneficial once you've had multiple distant metastases.
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I think 5 yrs ago Provenge was early in use/trials? My Dr does a lot of research as well as teaching - and of course, taking care of patients. He seems to have a lot of forward moving energy and his support staff is very good Russel Szmulewitz University of Chicago
What hospital is your doctor working? Who is getting and administering the Provenge to you?
Your time to Castration Resistance is below normal, but I might be due to the amount of cancer volume that you started with. Maybe your cancer mutated from the chemo. Hard to say. You might do a lot better on other treatment modalities, so keep having a positive attitude. It seems like you do.
I have a world class oncologist at City of Hope. I can’t imagine having a better doctor than her.
If we do the Provenge she said a local Red Cross station near my house will draw the blood, but the infusion will be done at City of Hope’s main campus where she’s located at.
She is one of the most knowledgeable MOs I have ever had the good fortune to meet. It's a good idea to send the link anyway, so she knows that you want to discuss it.
I remember my MO saying the average to castrate resistance is about 2 years. But he emphasized that was an average with some people getting much more time and some much less. Everybody is unique. It’s all a crap shoot. I’m coming up on 6 years of resistance but I know that at some point it will end. I try not to think about it.
Six years is great! Yeah, all the numbers are just averages; I wish my case would start leaning to the high end. 🤣🤣
I just roll with the punches and take the hits as they come, rather than fret over what might happen in the future beyond exploring treatment options and planning in how to deal with symptoms.
Currently nothing but supplements. I’m on an ADT vacation, my third. That could change shortly as I’ll have a new PSA test and MO appt next week to see where I stand.
Initially I was on Lupron and Zytiga for about 15 months followed by a 9 month ADT vacation.
Then I had 20 rounds of RT and about 18 months of Lupron only followed by about a 1 year ADT vacation.
Then 8 months of Lupron only followed by the current ADT vacation.
my dad went castrate resistant in a year. It was devastating and it’s been a rough ride ever since. We are starting chemo in a few weeks to knock everything out and hopefully go back to hormone sensitive, as some say this can happen after chemo. Please keep us updated 🙏🏻
I started ADT in July 2022 then Xtandi in Oct and I'm not sure I ever was truly hormone sensitive. My PSA has been consistently dropping for the year but CT scans have shown that the mets (I'm high volume) never shrunk and have been mildly growing for the last 6 months at least. Like you, I was hoping for at least a few years of HSPC but shit happens! I've stopped Xtandi and start docetaxel next week.
The first week and a half after chemo1 was pretty bad. I had severe exhaustion - just getting up out of a chair completely wiped me out and I had to stop my exercise routine. But I did have a liver biopsy 2 days before the chemo which gave me pain so didn't help. Now it's over 2 weeks since the chemo and I'm feeling a bit stronger and back into a reduced exercise routine. My second chemo is on Friday 😕
The history on my profile is currently empty as I try to edit it down to something a bit more concise, but I’ve been here over a year, and some may remember that my particular cancer never generated much PSA to begin with. It was never more than 1.1, except for right after a TURP procedure that bloodied up the prostate. A biopsy of my one of my bone mets was PSA negative but PSMA positive. I’m not saying PSA is a meaningless measurement for me, but I don’t trust it as a terrific indicator for me.
PSA has proven to be totally misleading for me and it irks me that everybody seems to talk about success being measured by how low their PSA gets and how long it stays there. It's been said many times that you should treat the cancer NOT the PSA!
I started with Lupron and docetaxel, reached a PSA nadir of 1.54 eleven weeks after finishing the chemo. PSA rose slowly but steadily after that, doubled from nadir after thirty-one weeks. Started abiraterone and had six cycles of cabazitaxel, finished the chemo in March 2021. PSA dropped steadily over the seven months that followed, all the way down to 0.01, and has stayed down there ever since. The side effects from Lupron and abiraterone are no fun, but they are doing what I need them to do.
I recommend doing genetic testing to see if you have one of the mutations that may need specific treatment/drugs. My husband didn’t have that until 6 years in and it changed the course of treatment.
I had the genetic testing my MO recommended, nothing unusual, but that was a simple blood test. I think it was more geared at looking for risk if cancer rather than making the existing cancer.
Isn’t there something that looks more specifically at your actual cancer cells? It’s not something I’ve done a lot of research on.
Hello dhccpa - Interested in your Lupron only stint - did they just give you Lupron and then monitor to see if it was enough? I am low volume and PSA max was 2.2 prior to Casodex and Lupron 4 weeks ago. After 1 week on Caso it was already down to 1.5. I started Abi this week because my MO said, "everyone that does both L and abi do better" but I definitely notice the extra side effects of abi and want to suggest L alone and maybe cut a track like yours.
When diagnosed the urologist gave me a book that indicated abi started when Lupron failed. Apparently using them together from start was just beginning and hadn't filtered to my area yet. After I had been on Lupron a year, I spent the next year getting other opinions. Docs were split 50/50 on whether to add Abi given the good results from Lupron to that point. My oncologist, whom I stayed with, was one who said stick with Lupron alone. That's still his position.
So abi is supposed to complete the circuit of testosterone depletion with Lupron in the adrenal glands area as I understand it. Extra, so far, is only that the hot flashes are more significant, ie instead of a mild warmth w Lupron I have the beginnings of breaking a sweat. I hope it means its doing good work!
i got to castrate resistant in around 19 months; but i guess luckily so far, the resistant bastards, instead of spreading everywhere, started with one lesion in my neck. Radiation brought me almost back to Non-detect in April this year; now recent PSMA-PET scan shows two spots, one in my T12 vertrebrae and a possible 1 CM tumor near the prostate. waiting for the Radiation oncologist to respond about when we can zap those spots. i finished my Provenge infusions about the same time the lesion appeared in my neck. is Provenge helping? i hope so. had a PSMA-PET scan just a week and a half ago, and discussed with MO on the 3rd. so i have only been waiting to hear from the RO for two days.
This is going to sound trite, GI448, but it's absolutely true: Your cancer's course is normal for you. Our potential position in the Great Distribution Curve o' Treatments 'n' Outcomes means nothing, because at any point we could be an outlier (great OR poor) or smack dab in the middle of what's "expected" by the data.
My PSA was never stable, and I never reached non-detect or the oft-quoted "<0.1" on ADT and early chemo and radiation. There were indications of castrate-resistance (CR) around 18 months via PSA rise. I was largely asymptomatic. There were perhaps new mets in ribs or feet (it was - and still is - tough to tell with all of the old met echoes in the scans), but the official CR label didn't come until a bit later.
Since I am a good trained engineer and quasi-scientist, I naturally thought I was, well, screwed, because that's what the stats predicted. That was over 5 years ago (I am 7 total years post-diagnosis of Gleason 9) and I am now completely uninterested in applying statistics to my condition.
I've accepted that the enemy is aggressive, always at the gates and that, somehow, I need to live with that and strive for QoL. The only thing that matters to me is how I feel right now and how I am going to treat what comes next no matter what time it is identified. "Having a plan" is the best I can do.
So, rather than read something into how quickly you've been labeled CR, I can offer up that I (as a matter of personal opinion based on my experience) would be comfortable with your MO's short term plans. I got my own "Provenge" achievement badge, because why not?...it's proven to statistically (there's that word!) extend life despite not being able to be directly measured via a decline in PSA or mets magically disappearing. Over the years, I've zapped a few mets because I like the idea of taking a direct, focused fight to my cancer (last month, it was radiation to one in my right scapula).
As Tall Allen pointed out, you can consider Xofigo. I don't know what your tumor burden is, but maybe Pluvicto is out there next. It was for me, even though it turned out to be "meh".
Anyway, you've got a good MO, multiple options, and (most importantly) time, brother. Good luck! - Joe M.
That doesn’t sound trite at all. I appreciate the candor and great information.
I’m not an engineer, but I dealt with data and statistics and trends most of my working career. I don’t dwell on it, but it’s definitely a “habit” to look at it and question it.
I became castrate resistant in just about a year. Initial gleason 9 (5,4) I have the cdk12 mutation. I am awaiting ct and bone scans in a few weeks and then will have an appointment with Dr. Aggarwal at UCSF to decide what treatment is next. Had 10 doxytaxal that the CDK mutation should have suggested was not worth doing. I am very impressed with DR. Aggarwall but do not know how the CDK12 info was overlooked. The mutation was found in biopsied cells from a lymph node met.
Should I contact Tanya? Is it possible by virtual visit?
Tanya Dorff at City of Hope in Duarte. I'm not sure if she does virtual consults for new patients or not. She's tough to get an initial appointment with...when I first reached out to her, they told me like an 8 week wait to see her, but had me forward all my medical records for her review. I got a call back a couple of days later and they said Dr. Dorff agreed to see me in just 3 weeks (right between Christmas and New Years no less). That was an indication (to me) that at the time I had a pretty serious/urgent and/or interesting case.
She only does clinic two days per week, she's in the lab or admin functions the other three.
Edit: When I thanked her for seeing me so quickly she said "compassionate care with urgency" is our motto.
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My MO suspects that I am non-metastatic, castration resistant but will not approve any treatment until metastases develop.
RO said 6-12 months
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