Dear fellows, see my post "Adjuvant ADT". My question there was what to expect after completion of 24 months of ADT (22 june 2023). Now we are six weeks later and first results are in. PSA remained <0.1, whereas my T. rose from <0.4 to 0.9. Coming thursday I am seeing my oncologist/radiotherapist. Is there anything I should ask him about these results. I see him once every six months. Isn't that quite long?
I thank you all for your attention. As said earlier you have been a great support for me.
Henk
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Hoi Magnus, I was on adjuvant ADT. Main treatment was external radiation. Adjuvant ADT stops after a certain period of time in my case 24 months. After that period the question is, will PSA stay undetectable. If not, the PC may still be lingering.
Daer Allen, as we all do, I appreciate your opinion very much. But what do you mean by "probably just some dead cancer cells". Some explanation would be appreciated.
The point of the radiation and the medicines you take is to kill cancer cells. Dead cancer cells put PSA into your serum, which is picked up by your PSA test.
Good night/morning Allen, thank you for explaning the PSA-value after treatment. But what about the T? Is a rise from less than 40 nmol/L to 90 nmol/l less than six weeks after stopping the Triptoreline encouraging?
I daily walk about 2 to 3 hours (5+ km's hourly). I do all the good things (lifestylewise) and feel rather great. Minus point off cause is the extreme low T. Not only for my sexlife, but for my body in general (fat in stead off muscles; negative cardio-vascular influence etc.). If my T won't come back, can I force it to come back and will that have consequences for the PC (PSA)?
There is a 1/2 life / time delay, where withdrawal from ADT will still be a factor. In YOUR case, it could be 1 - 1 1/2 years for the drug to stop affecting your system.
This is a 'normal' period of adjustment. (I refer to the SOC types)
Your T might be slowly restored to it's 'old' value, but there is no guarantee that it will.
I'm also assuming that you are 'finished' with your primary treatment and there are no plans to continue ANY form of treatment(s) that would affect your bodily hormones and blood.
You'll continue to monitor your vital statistics (every 3 months - maybe 6) to see if your PSA remains 'undetectable'.
IF you have a recurrence (BCR), you are in a new statistical group, with different options that go along with the 'new' Dx.
I have been down that road and speak from MY personal experience - not everyone reacts in the same way.
Other than specific types of scans, and PSA values, the only way to know your current state of PCa is to 'holiday' and wait to see the results of 'past' treatments. Your holiday would likely be at least one year and probably more - you still have some ADT in your system.
Dear RonnyBaby, You are right. No further treatments planned. I'm in the waiting zone. Thursday I see my oncologist/radiotherapist, I will have to choose between testing every 3 or 6 months. Which alternative would you choose and why?
Assuming you are a resident of the USA (I'm Canadian) you have a different medical system to operate in. At this point in time, you could change your mind later, but every 3 months will be a better guage of what's happening inside.
It could be argued that 6 months is fine - probably is - but the 3 month cycle would help you manage the 'mental / emotional' side a bit better, IMO.
A complete blood panel is in order as well (every 6 months). You want to establish 'benchmarks' - they will be useful later.
FYI - I'm taking 150 mg of bicalutamide daily - have been for 2 1/2 years - as a mono-therapy - after my BCR.
That protocol has kept me undetectable and has few side effects - I feel almost normal - muscle mass returned - no crying issues - no longer suicidal - sleeping well again - good appetite - normal weight stability - better moods - more energy and more - but I had to fight for it because it is NOT the SOC.
Works for some - I'm being monitored every 3 months and will continue that cycle for as long as 'they' want me to - Part of one of my clinical trials want's to follow up for the next 4 years - THEY are paying all the costs .....
Hi Ronny, I live in the Netherlands and the social security system here is quite OK. As for the period of checking up, I will just ask my RO to sum up the pros and cons of a 3 and a 6-month period. I do have a complete blood panel every year. It has not changed much in the course of the years (labresults in general are OK).
ADT can cause some anemia and other issues such as white / fighter cells being low. My issues resolved after I quit the medication.
Funny you mention the Netherlands - we just had some visitors from Holland and I married into a Dutch descent family - so the contact is ongoing .... small world of course !
Hi RonnyBaby, after I started ADT my Hb and Ht values are slightly below normal, but no psysician has ever paid attention to it. I will ask my RO about it.
Did you read, The island at the center of the world: the epic story of Dutch Manhattan and the forgotten colony that shaped America. - New York : Doubleday, 2004, by Russel Shorto? I did and I found it fascinating.
Likely they will use a PSA of 2.0 (above your nadir of 0) as the threshold of concern combined with any rate of increase. So for now, you're good. I'm approaching 6 months post 18 months Lupron treatment (w/radiation and brachy). At 3 months PSA not detectable and T was just starting to move the needle. Curious as to where I will be on the test next week. Feels like my strength has improved (age 67) but I kept very active throughout treatment and continue to lift, bike, and climb. And no more hot flashes! And that erection thing - much better, but still need vitamin V.
Your scenario sounds a whole lot like mine except that I am puzzled by the length of time for ADT with some people. I was given a 4 month shot of Lupron just prior to my radiation and that was it. It actually took about 6 months to wear off but after that I was good to go. One year after radiation was complete, my PSA was .2, which it has been for the past 4 years, and my T was at 450. My T has climbed a little since then and I am probably between 500-600. I can get erections without V but having it makes it longer and stronger. I just don't see why 24 months of ADT is needed unless the doctors just want to "make sure"!
Hallo Conbio, thanks for your info. Our cases are somewhat similar(Gl 4+5), radiation and ADT), so i'm curious about the outcome of your 6 month-test (PSA and T). Maybe you coould let me know. As for that erection, I will try a penispump.
Hey there - well I'm up into the normal range of testosterone after 18 months of Lupron and another 6 months. Up to 430 ng/dL from 280, 3 months ago. Also just hitting the low end of normal for my RBC (4.37). after EBRT and Brachy (3/30/22). My baseline RBC was on the low end (4.5). First detectable PSA at 0.1 - so all good so far.
Congrats man withe these excellent results. As for the testosterone I can only hope I can keep up with you. One question: I saw your post about frequent urination at night. Is it going better? Do you have some advice?
After 24 sessions of EBRT and then Brachy - I was losing sleep, getting up 8-10 times a night. It sucked. What helped a bit (up 5 times at night) was taking both my Flomax doses at night instead of one in the morning. And of course, limiting fluid intake after 6 pm. It took a good three months for things to settle down. Now I'm back to normal, only up once or twice overnight, which was my baseline before all this PC crap. 😀
I had a similar treatment regimen, radiation (IMRT) and 24 months of Lupron. My testosterone gradually returned to normal for my age (70 now). Right after the end of the ADT treatment, 12/1920 it was 18. On 6/2021 it was 160, 12/2021 it rose to 234 and the last test I had 6 months later was 366. PSA has remained low, no worries yet.
My experience with adjunct ADT (with chemo) was that the ADT was what kept my PSA in check. I also found through an Axumin scan (today probably GA-68 PSMA scan) after stopping the ADT (Lupron), I had a bone lesion and a small tumor near my bladder.
The point is that this disease is complex and the treatments and scans are somewhat trial and error. If your PSA is high enough a GA-68 PSMA scan may be helpful to see if you have metastases.
If so, you might consider abiraterone or other similar options as you and your oncologist may decide upon. If you are only seeing a radiology oncologist, I would suggest adding a medical oncologist to your team.
Dear DMT1121, Thanks for you answering my post. I made a note about the GA-68 scan. The choise for only a radilology oncologist is my own, because he is extremely knowledgable about ADT (and my urologist is less). I read your post "A new direction" and I found it very uplifting. Thanks and best wishes from,
When you have your testosterone checked, you may want to get both your total T and free T measured. Total T may not give the complete picture. My total T bounced back within 3 months of the ADT wearing off, but my free T has been on the low side much of the time (.6 - .8%), so my total T isn't being effectively utilized and my strength, energy, appetite, etc. still aren't the same as they were pre-treatment. 🦊
Dear cancerfox, thanks for your repost. I will take to heart your advice about free T and discuss it with my radiotherapist/oncologist coming thursday when I see him.
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