Very pleased to see my undetectable PSA blood test for the ninth time but also that I had a great consult with my London MO and onco nurse where he said he would support me on a decision to come off ADT if this continues to June 23..
BUT he recommends I stay on to July 24.
Hmmm .. to be honest I didn’t think he would ever recommend anything other than lifetime ADT so am blown away that he thinks it isn’t madness ( given I had distant multiple bone mets last year!
One to think about!
Great PSA result 👍👍
Congratulations. So have your distant mets gone on a scan now?
Great to hear 🙏
good👍. What scan are you having Friday?
For my Lu177 trial I am confined to bone scans and CT. But bone scan only shows diminished intensity , so no idea whether it has zapped tumours 1% or 99%? And then what scan(s) should I advocate for going forward , particularly as non PSMA avid tumours might fill the void left by Lu177 destruction of PSMA acid cells.
Did you have a PSMA/ PET and/ or other scans after Lu177?
I agree with you. At some point everything fails and it is better to save a more advanced therapy for later. It looks that every met has a different life and made a different genome. Therefore zap with high precision SBRT the single met and save the more advanced therapy for later.
Congrats - love such messages in the morning! All the best for the next months.
If you feel fine on ADT than just stay on it. Don't gamble with your life.
I believe if you go of ADT than later if you will need SBRT of your mets it will be more problematic. Therefore stay on ADT and it anything comes out as CRPC on any of your scans you can just zap it with SBRT on MRI Linac if it will be feasible. At least I am planning to do it that way for myself.
My RO didn't recommend to go of the ADT. My first MO was actually planning that I go of from ADT. That was 4.5 years ago. I am still on degarelix ADT only and my PSA was under 0.5 last time. I am saving the more advanced therapy for the future as we know at some point everything fails with the cancer. My RO said last time that he will follow me every 3 months in the next 5 years.
Thanks Seasid, I think from the forum postings we have had you and I have completely opposite risk appetites don’t we.
You would never have done the OVM-200 clinical trial as it was ‘first in human’ but I haven’t left anything on the table of course.
I’m undecided atm. 3 months is a long time I our world of course so heavily aware it’s a decision I may not have to make.
My go to profile for optimism is Gourd Dancer who took a long time to take the plunge to come off ADT and then stayed NED.
It was very sad to me that some young member 43 years old stopped his ADT after total success like yours and went to climb Kilimanjaro and after that he died very shortly. I was very said and said that I will not go off ADT.
Treatment decisions are the single most important thing what you can do either right or wrong.
I just want to live.
I know what you mean and do want to live but also live my best life
Please read this post:
healthunlocked.com/advanced...
Yes, I read about BAT on your site yesterday and TRT scares the pants off me. All of my mets developed during Lupron holidays and appeared just as my T was approaching normal levels. I can't help but feel that had I stayed on Lupron for the past 5 years without interruption, that my spine wouldn't be a tumor-riddled mess.
Coming off ADT with recovery of testosterone could be fantastic if only for a short time. That’s why I think a course of BAT in some form might be a good choice for me after Lu177 but my MO here in Canada would not be able to supervise anything outside SOC. I have more tolerance for risk than Seasid. I want to be able to live again with a good QOL which has mot been the case lately.
You sound like a very good candidate for a personal trial of BAT if you can find a source or prescriber for testosterone. Just monitor PSA in the first months to verify you respond favorably. You can just stop it if PSA rises rapidly and progressively then recheck scans. Have your MO consult with Denmeade? Or find someone else. (Naturopath?) It’s OTC literally everywhere here in Mexico. Accepting risk with eyes open!
Is good news for you... And certainly the conundrum of our journey, whether or not we can stop therapy... And what the consequences might be.
Everyone is different, and everyone is entitled to their individual diagnosis, prognosis, etc. But does data support the path you're thinking about? Bone mets and you want to stop the thing possibly preventing more or progression? You are brave sir, I commend you!
I've had this conversation with my MO a few times, even recently. But given my unique presentation of MY PCa, he's really not warm to the idea, we discussed vacations, BAT and a few other paths. We discussed in detail the possible reactions and +/- of doing this. Given my history, my mind is in one place, but my PCa has a mind of it's own, will do what it does. And to each his own as none of our cancers are the same, so it's difficult to determine where we might fit in.
Good Luck and Best Regards
My London MO is very experienced and standard of care is his go to but he acknowledges there is no data for my circumstances.
I would like to get my antibody test results out of the OVM-200 trial sponsor before a decision but still my treatment pattern is very non standard even if I hadn’t volunteered for the vaccine.
Will be speaking to the Netherlands re results of their bullseye early Lu-177 for hormone naive and ogliometastic. patients as I had early Lu-177 x 3 ( PSMAddition trial results are a long way off I believe)
However even if these had published neither did the 3 plus 3 treatment I did with early Lu-177 followed by the more standard early Docetaxel and as far as I am aware that combo (that makes so much sense to me) has not been trialled.
Even if it had I would need a trial that followed up a successful response with a safety net of a radiotherapy ‘triple’ - SBRT, 20 x VMAT and 2 x Brachi boosts ( this last my MO was not happy with)
Plus 18 (or 30) months of ADT
Plus 12 (or 24) months of Apalutamide!
Can’t see a clinical trial will do this early and holistic approach
And then once stable and if in NED place - vaccinate you
So It’s a conundrum indeed!
Great Result. If you find any results for "Bullseye" please post them or the link as I am very interested as I tried for LU first line treatment and was refused
Its still recruiting so other than reporting a change of title and ligand no results since the pilot (I'd love to know how those 10 guys got on!)
clinicaltrials.gov/ct2/show...
My 'early lu-177' was not as early as these guys as they were not taking overseas candidates on this trial and my RO offered SBRT to my two mets saying i still had a 30% chance of a cure with SBRT to the mets and the abscopal effect.
If I had a time turner I would have opted for private Lu-177 at that point (though the world was in locked down so may have been tricky). When I final got it 6 months later the SBRT had failed and I had 6 new spinal mets.
So guess i am closer to the PSMAddition trial but my Lu-177 were given 4 weeks apart not 6 and followed up with 3 Docetaxel starting 3 weeks after last Lu-177 and every 3 weeks. I had hated idea of chemo but actually as i was youngish and fit it was fine. I was iced up and kept my hair and nails however my red blood count has still not 100% recovered. My scan at this point is on my bio.
By this time it was clear the HIFU had not sorted the prostate as activity remained so the radiotherapy 'triple' was planned - 20 x VMAT, SBRT to a met at Th9 that still showed specious SUV (though much reduced) and 2 x brachi boosts.
No trial I know of to watch!
Its tricky I do want to know my unborn grandchildren and i am coping with the ADT plus Apa in still working, going ski-ing next week, at football , gym, family time, holiday planned to Florida in May...but the HT means I am not 100% me and what if its not being supressed by the HT? And if it is the cancer will workaround anyway.
My dad had standard of care at the time when he died in 2016, HT suppressed it for 3 years but no early chemo or radiotherapy treatment to prostate nor did anyone mention the clinical trial drugs (Abi etc) and I saw him age gradually in some senses but quickly in others. Chemo at second line meant no more football matches and his QOL disappeared.
In hindsight that sequential SOC really makes no sense and never did. I wish i'd researched then but trusted his doctors.
Brysonal Thank you for your comprehensive reply I am HS Firmagon +Abi Pres no other
PSA 0.010 I believe we should be able to choose or own treatment not SOC
I was just reading about IADT so would be interested to know his protocol.
I started ADT in November 21 so this is month 16. I went undetectable after a lot of treatment in July 22 so 9 months undetectable
Thanks for your reply
I'm also interested in the protocol if you have it. Please let me know. Thanks.
I just started IADT. Hoping to learn more about how to make it last as long as possible. If there's a protocol available for this, I'd love to start it as soon as possible.
Go news!!! Now to tell you the truth I hate the expression "to tell you the truth"... so what were you telling us before?
To tell you the truth:
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 03/12/2023 10:55 PM DST
One month on alternative meds only
