No!!!
My profile has the diagnosis details, I'm fortunate of being treated by a Dana Farber Oncologist, which we have a great collaborative relationship.
I've been tested every three months for the last two years at PSA <0.02...
So, we've agreed to go off the Androgen Deprivation rails, and monitor if my cancer, will it go into "progression" status? Excited to get my testosterone back, the risk is a no brainer, all the best...
Lead the way into the dark....i may follow keep us updated..b.w.
Yes sir, will do...
Starting out with a PSA of 1000 and many visible mets I think you should not start with intermittent ADT. It can happen that you do not get the PCa back under control. I would try Bicalutamide instead. The testosterone will rise more quickly than without it and you still fight the cancer with fewer side effects than before.
I did start with Bicalutamide, it killed the tumors, then Lupron systematically cleared the rest and held PSA <0.02 to date. Of course, this is risky, but the chance of getting T back for me is worth the risk.
Lupron did kill only part of your tumors and stopped the rest from growing, therefore the low PSA value. A CT/bone scan will show smaller metastases now but they are still there and wait for their chance to grow.
Bicalutamide will not lower your T, therefore the recommendation. It did double my T each time I took it.
Understood, I've done extensive research about "Metastasis" and "Circulating Tumor Cells" (CTC), once the primary tumor is born and anchored, it sheds its cells into the bloodstream, thus the "no cure" rule.
So, if the cancer cells are weakly defined, the heart pump would obliviate it, shred it to non-existence, but, unfortunately, PCa finds a way to survive...
Well, you know very well, this is the first step of getting my T back. I will super charge it back, stay tune...
Yes, we'll make the decision based on next lab results, if PSA <0.02, then cancel the Lupron shot.
Happy Trails
Without looking at your profile, I am making an assumption. That assumption -> you have responded well to treatment and you are in a situation where 'curative' was sill on the table in terms of staging.
I deliberately went on an ADT 'vacation' after 16 months -after 'primary treatment which consisted of ADT and radiation (still have my prostate) I wanted to see how effective the treatment was and I wanted to know if I still 'had cancer'.
Without the vacation', how would I know ? Maybe I was cured and there was no point in continuing a treatment I no longer needed.
That should help answer your question - what are you trying to determine ?
OR, perhaps you want to cycle ADT on and off - that is the other possibility - as long as you remain castrate sensitive.
"Without the vacation', how would I know ?"
Yes, moreover how would the docs know, ADT for life is a fake punt for docs, some of us are inquisitive, we challenge the status quo, PCa is lost with the docs...
Rb:..dont chide me...but i looked at your profile after reading ur response...and saying u took adt vac. Would like to know where u are now as i see your latest post talks of further treatment?that said . The vacation resulted in pca return with vdngance?...i would love to take vac. But ductal hystology and g9 wmets....is almost certainly prohibitive...me psa <.02....is sign double blockade has put up formidable defense...guess no need to tempr fate....wondering iif glad you did....b.w.
I have never had 'mets' - and at Dx, I was node positive. There was a SLIM chance that it could be curable. I had a miserable time with ADT and had every BAD side effect one could imagine, including becoming suicidal.
I wanted to know the state of my cancer, so after 16 months of ADT, I quit outright. It was not advisable (they wanted me to do it for 28 months) - but I did it anyways.
I have had a BCR (no surprise) but I've been on an AD vacation for over 2 1/2 years. By the time I re-start ADT, it will be about 3 years OFF -and worth every minute of it IMO.
I 'fully' recovered from ADT and played the best GOLF of my life - I achieved a lifetime objective - walk off the course knowing that I played really well.
Well = a score of 83 - not bad for a lifetime amateur !
Anyways - back to PCa -> My PSA is 'probably' about 6.0 - that is a rough estimate, based on my previous readings and trend.
I am in NO rush to do anything - except I'm waiting for a PSMA/PET scan - I was accepted for a clinical trial.
I feel good and fully expect to be around for a long time. In spite of my bad experience with ADT, (it was the 'Lupron' that did it), I will be going to a mono-therapy - Casodex, which is much milder, in terms of side effects - I expect to manage that much better..
I have a 'genetic' condition - hard to explain - but I'll put it this way - I am a 'super responder'. I react 'strongly' to many medications - I responded really well to ADT - in fact, I over responded - so mono-therapy of a milder nature makes sense.
I recently had a bone scan, CT scan and MRI- everything is 'clear' - so the hope is there is a small HOT SPOT or lymph node that is causing the PSA reading to be elevated.
We MIGHT be able to ZAP it, or I could cycle on ADT for as long as it takes to be forced to change directions.
I'm not even close to 'mets' - at least not yet.
Hope that explains .....
It does and I like you have a very hard time on ATT good luck man
So happy to hear you're getting a chance to try this experiment of one! As you've previously mentioned, we had similar diagnoses around the same time and similar treatments. Unfortunately for me, my cancer turned neuroendocrine and based on symptoms that started happening just short of a year since diagnosis when my PSA was <0.01.
I say this because you probably already know the risks involved with taking a treatment vacation, but there are anecdotal cases like mine that show there may also be risks to overtreating the disease. Studies only show what works best for populations, which may or may not be the best option for specific individuals.
Prostate cancer is unique to our biology, so the experiment of one is spot on!
Actually, my doc agrees of going off the ADT rails, since my PSA <0.02 is holding for awhile, and stopped taking Abiraterone about 6 months ago.
But, I'm still covered from my last Eligard shot a month ago, so in two months the big decision to make...
Then after stopping Lupron, what will my cancer do? Can we proceed with inducing T, I hope so, but if my cancer is roaring back, then time to throw in the towel and choose life over you know what...
Well for you it's best just sitting in the dark, you look excellent in that light....
And if you get your T back (make up for lost time)......
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 11/29/2020 7:31 PM EST
Yes, getting T back and gaining on it will be amazing...
Did you have a baseline CTC test? That would provide tracking data for the next phase of your journey. I've been getting the Biocept CTC test and have also had Cell Search. Good luck with getting your T back🖖
I hope you have a fantastic vacation which then turns into permanent holiday 👍
Hope things go well for you.
I stopped ADT in early 2017 and so far I'm glad I made that decision.
Since mid 2017 my life has been back to normal, but I dread the day when I might have to go back on ADT.
Very best wishes for the future.
Dave.
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