I thought 20 tx imrt & 4 mos of Orgovyx from all the docs I talked to secured a pretty good chance of crushing my cancer AND a real good chance of having my T come back to Normal after " 4 mos". "
"T " should be back to normal within the same time you were on the drug " that was the wishy washy way the docs opinion of when my T would recover -"4mos on Orgovyx, 4 mos after treatment" -recovery to normal of T. DIDN'T HAPPEN!
Well my cancer looks like it's crushed (thank G-d) my last blood PSA was .2.
However , my Testosterone 5 months post Orgovyx was only 79 and I am having still the full realm of Orgovyx symptoms..fatigue, muscle waste, hot flashes, weight gain, no libido , ed, gynecomestia, joint pains, etc. you all know the horrible realm of adt-orgovyx symptoms possibly for life.
Docs say it may never get better than 79 and may be symptomatic for rest of my life.
So now it comes in full view and is clear..all the horrible symptoms of Orgovyx are not symptoms of the drug itself but really the symptoms of LOW T which may be with me (if it doesn't recover ) for the rest of my life.
what is the difference of being on ADT-Orgovyx for life and having the exact same symptoms off the drug but caused by the low testosterone you acquired off the drug and by taking the drug.
My gleason was 4-3 intermediate unfavorable ,psa 8, psma-no mets and in no SOC studies should I be on Orgovyx for LIFE , but if my T doesn't return that's exactly what I bought in by choosing just 4 mos of ADT. ( you put lipstick on a pig it's still a pig!)
Yes my MO says we can start TRT (testosterone replacement therapy ) BUT there is a whole lot of opinions that TRT will bring on a RECURRENCE and poke the bear.
Moral: Be very clear in your Treatment selection of all the consequences of EACH tx , Radiation, Surgery and above all ADT - no matter how palatable it looks like when it is being served up to you.
The offerings may have been given to you not wholly and totally in your best interest.
Sorry for the long post. Any viable solutions are welcome
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JWS13
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You seem to be more concerned with the loss of libido and other SEs of the ADT than you are the actual cancer that can potentially grow ... I've been on Orgovyx for 18 months now and other than the depressed libido, my side effects are virtually unnoticeable...
That may because I work out with strength training and cardio every day, take long walks with the old lady, stay positive and remain grateful for the life I have, which I wasn't very focused on so much before being diagnosed...
I hate to sound negative to you but if you're stage 4, you may very well be on Orgovyx or some other ADT indefinitely... And in the case that perhaps you can "crush your cancer" and it just goes away, you can always get TRT to get testosterone back...
Every one of us here are dealing with SEs of ADT, it's my observation that those of us who are doing the best, exercise regularly, have a positive state of mind, and focus on being grateful for the happiness that we all have in our lives if we look deep enough to find it...
You can ask your urologist if he is willing to prescribe human chorionic gonadotrophin (hCG) and clomid for a few weeks to kickstart your natural production. If not, TRT to normal T levels may be the only alternative.
JWS13 wrote -- " ...My gleason was 4-3 intermediate unfavorable ,psa 8, psma-no mets ...................................
Yes my MO says we can start TRT (testosterone replacement therapy ) BUT there is a whole lot of opinions that TRT will bring on a RECURRENCE and poke the bear.... "
and
" ... would you be concerned that taking TRT will "poke the bear" or trigger a recurrence?... "
Back in 2015 @ almost 65yo, I was GL10 with PSA of 14+ and no sign of mets so I chose IMMEDIATE CASTRATION. *did not want drugs* Had a non SOC treatment and began Testosterone Injections in Jan 2016. Have had a GL6 & GL7 recurrence in 2018 and STOPPED the injections THEN BEGAN AGAIN with continued PSA monitoring. Have cycled the on/off/on injections a number of times depending on PSA numbers and have remained PCa FREE. While on injections the *T* range is 500+/-ng/dL to 1,600ng/dL and when stopped I return to T<2.5ng/dL thanks to the Orchiectomy.
If it brings back the PCa I'll deal with it as needed and if it kills me, I and even wife of 50 years are OK with it because LIVING LIFE is better than EXISTING Being Alive. Today was a 11.11 mile bike ride began at 4AM and yesterday was a 33.33 mile ride that I began at Midnight.
Slow down buddy. The reply from GSDF above is very good. I will add that just because you didn't find any mets doesn't mean they aren't there. PCa becomes system-wide. And treatment and disease progression is very complicated. And I'm with GSDF that you need to think about longevity more than merely side effects.
Most of us here on the advanced forum have had to consider having been given a terminal diagnosis. If you have PCa with metastasis you come across the fact that only 30% will make it to 5 years.
Emotionally and intellectually this is a shock for oneself and one's family. And then you try and figure out all the things you can do to extend that or even get there. And what you want to focus on, given your capabilities. And then maybe some other things don't matter as much.
It seems you have caught the problem earlier than some. That means that, in the world of PCa at least, you are really lucky. But if you fetishize holding on to life as it was, you might find succeeding in the new reality more difficult. May I suggest you do more reading? And in the meantime you should enjoy a long life in the best possible ways.
I'm on Firmagon ADT - I prefer to stay that way for many reasons (see antagonist) - but louschu your comment about a comparison with Lupron is great.I would love to try or Orgovyx instead a.k.a. Degarelix) but it isn't moved yet in Canada and it's crazy expensive.
Being prescribed Orgovyx out-of-the-gate is amazing. The OP should count their blessings. I find myself having to restrain my comments.
(You can look up my comments on this forum comparing the three ADT options.)
I have United Healthcare Medicare Advantage PPO and pay $72.30 per month copay for Orgovyx. Stunning how full of inequity the American insurance system is.
I have regular Medicare so the approval comes from Blue Cross in my case. Don't think approval is an issue but cost might vary. It's a donut hole item. First month was $1600
For a PCa patient, you are on the young side, and all studies show the younger you are, the more probable normal T recovery after stopping ADT. Still, probable is not a prediction for any one man, and I'm sorry that youare experiencing this. Depending on your patience, you could simply follow TA' suggestion, or give it more time, and while waiting , review some of the studies you will find using Google or pubmed with respect to T recovery after ADT use.
I'm sory that some others here have in some ways attacked you for complaining about your problem...in my opinion, such comments are not appropriate, and i ope you just brush them off....understandably, there are a lot of men here who have gone thru hell merely to survive another few years, and sometimes they vent when someone who has a currently better prognosis posts about SE problems.
Maley, I appreciate your comments but did not see the posts as attacks. One thing I value the most about this site, besides the incredible amount of information, is that we can be honest with each other. That is sometimes a hard thing to do with the people in your life. It is easy to say "good" when others ask how you are doing. When what you would rather do is tell them exactly how you are feeling, mentally and physically. But men typically put on a strong face to mask what really is happening inside.
This site is the one place we can come, to get honest answers and opinions.
You are not overly sensitive. In fact you are being honest and courageous. I will address those remarks this afternoon. Suffice it to say this is an open forum to address all issues of pain and discomfort and try to jointly find a solution. I realized when I saw their remarks that they as you said have had a hard road with this disease , and I understood that. Notwithstanding , if this is to be and stay an OPEN forum all inquiries must be allowed to be addressed here not just those that align with GS and John's views. Nobody here truly knows ALL of anybody's story here,. (i.e. prior medical condition, family circumstance, etc.) Thank you again Maley for speaking up..You are a true warrior. I wish ALL on this board the best resolutions with this bastard of a disease.
I am not feeling too bad, but I have lost a lot of strength with just recently been dx with severe osteoporosis, before been dx I used to do weight training didn't seem to do me much good still got osteoporosis. been reading on here about a couple of guys using sarms don't know if I dare go down that route, I might have some sleeping cancer cells.
thanks, I have a phone call with endocrinologist on 17th October, I have mentioned bat therapy before I think it only applies to guys on adt ,last time I asked for trt they said there might be some sleeping cancer cells.
would you mine helping me? Obviously your Docs were supportive of your use of Orgovyx instead of other ADT drugs........did you have any problems obtaining insurance coverage for the Orgovyx prescription ?
WRT "poking the bear", there are two possibilities of your treatment. Either the radiation killed or mortally wounded every last prostate cancer cell in your body, or it didn't. In the former, whether your T is naturally at normal levels or supplemented, there are no cancer cells to be poked. OTOH, if there is even one cancer cell somewhere, then a recurrence is in your future. If your T had bounced back (as mine did - in 3 weeks after 6 months of Orgovyx) it will be fueling that one stray cancer cell just as much as TRT would.If normal T levels result in prostate cancer then nearly every man would have prostate cancer.
Not in your best interest? Well, what was your expectations going into the therapy? Objective achieved with the control of the cancer? But what with known side effects? Not questioning your decision, just curious if you can be honest here, and were you with yourself then? It is a crossroad we all face, it's just my curiosity in asking. That said...
There are no unicorns in cancer therapy. But there are unrealistic expectations and when that is prevalent, it is usually followed by the buyer remorse. It is a natural effect as we sometimes convince ourselves that everything will go this way or that based upon what we read or are told. But we dismiss the most simplest explanation of these occurrences in that we are all different! Therapies affect us differently, doesn't matter there was a study with tens of thousands... MY Cancer is not YOUR cancer, it never will be. MY body is not YOURS... The heterogeneous nature of the disease dictates bee are all different, period.
Seems you've had a great result from your therapy in regard to efficacy towards the cancer found at the time. You should be celebrating this! And you already seem aware of the potential pitfall of TRT in attempting to alleviate the ADT symptoms. It's always a conundrum, the choices we make as cancer patients, with no clear answers because (see above) there's no doctor that can truly tell you this is how YOU and YOUR cancer will react. And yes, your treatment worked for what was seen and found, but this doesn't necessarily mean that there isn't some micro-cellular activity unseen that may rear it's head later. This is where replacing your T may be problematic and what the doctors fear. Same as we all do, what it is that we don't know...
As noted (other posts) there are some choices in ADT that may have different side effects upon any patient, problem is we don't know until we try. Same goes for T replacement. I'm not advocating any direction, just sharing my thoughts out loud, agreeing with you about the conundrum in the decision needing to be made. I just want to reinforce the idea that nobody really knows, not your doctor, nobody here, and even you, as to what may happen. I always advocate that a patient GO for it! That they just do their homework and educate themselves and be a part of the decision process. If your team isn't enthusiastic about the choice, then find a team that will support you and also GO all in! This is one of the most important aspects of our care, being in sync with your care team and not fighting them and potential selection bias, regardless of industry standards.
My T has been <10! Fatigue, Muscle Loss, Low Appetite (lately), seem to be the experience I've encountered. But fit hasn't changed my life, I still do everything I did before! My initial therapy choices in 2017 included some serious RT with 2-3 years ADT, which I refused because I was afraid of the ADT and all that I read about it. But I chose RP and the rest is history, a long history... lol. Part of that history was RT Salvage therapy with a short course of 6 months ADT, which failed a short time later with further recurrence and eventual StgIV soread. but that's my story... It followed the SPPORT Trial if you want to examine that and results for patients. Anyways...
My only suggestion would be if you are going to have T artificially replaced, I would monitor not only my T levels, but PSA very frequently! Not every 3 months, etc. That's so if it did awaken the beast, you know right away and can then react accordingly. Monthly at the least!
On this Canadian Thanksgiving Day, I give thanks that Lupron has worked for me for close to 10 years. I don't like the side effects (fatigue seems to get worse each year) but glad I am still here (I will soon be 79). Oncologist told me after radiation failed that I would be on Lupron for life.
I would give it more time. I am guessing it will improve. In the meantime I would start lifting weights and exercise. If exogenous testosterone brings back the cancer then it was not cured in the first place. If it has not returned in 5 years or so you could try taking it.
Be patient. My T didn’t recover at all from low of 4 until 9 months after stopping Firmagon. Then it raced up to pretreatment normal of 750+ within the next 4 months. Of course, my PSA then also started slowly increasing again . .
Sadly, learned I’m stage 4 metastatic after RP and full pelvic IMRT. Full history is in my profile, but luckily managing extremely well for 8 years now and hoping for many, many more. PSA currently undetectable on Darolutamide monotherapy; couldn’t handle SEs of long term “standard of care” ADT.
🤞for you that you’re truly rid of the cancer and have only transitory SE issues to worry about. Best of luck.
Most men recover their T naturally a month or two after stopping Orgovyx; that's why it's so dramatically superior to injectable LHRH drugs in terms of QoL. There are those, however, and it appears you are one, for whom T doesn't recover naturally at all.
That makes you a candidate for T replacement. It is not at all dangerous; you're simply replacing the chemical that your testicles would have made themselves.
so..by doing trt you are not triggering a reoccurrence of any microcells or cancer cells? I hear this debate going on and it worries me? I am despairing because I am symptomatic of Low T just like I was still on Orgovyxx..no libido, weight gain, fatigue, osteo, metabolic syndrome, etc.etc. if my t stays low like this forever, then there is no difference between having low t for the rest of my life and taking orgovyx with it's castration t for the rest of my life. you are giving me hope horse that it will return . thanks very much..
The answer is no, you are not triggering cancer, in any way different than the natural recovery of your T from your reawakened testicles would have. You may want to YouTube Dr. Mark Scholz on this subject.
If I am reading you input correctly after 4 months you have seen a rise of testosterone to 79. You did not mention what your baseline T was. You maybe one who just needs more time.
I had a T baseline of 784. As I approach 80 I do not expect it to return to that level ever again. From my under standing your are out of the castration range which is good. As mentioned be careful for what you wish for. Low T has a tendency to keep the cancer at bay at least for a while.
You did not mention your physical habits in regards to diet, exercise, etc. It has been my experience and the experience of many here that diet, resistance training and aerobics are critical to overcoming the SE you are having. There is no magic pill.
As you are finding out most of the doctors “practice”, honestly they are parroting back to you what they have been told or researched. Unfortunately your doctor should or may have said “NORMALLY T recovers in the amount of time you are on it but there are no guarantees.” Sometimes we hear what we want to hear not what is said.
never heard the "but there are no guarantees" isn't that generally what's left out. notwithstanding my baseline prior to PC and treatment was 279 and that was working just fine. is it going to return? is t replacement an option or do i trigger a reoccurrence? i work out on a spin bike 1.5 hours a night, i watch my weight, not much meat, or carbs, no alcohol, etc. I am a blackbelt in martial arts and have run 6 marathons.. any thoughts please?
That’s my thought as well, sit tight for another cpl months up to 8 and if it doesn’t return naturally or w natural supplements then consider trt. Like mentioned earlier it’s no different than having your natural t recover, also latest studies are finding low t is one of the main triggers of Pca… alternating high t with no t is much better than having low t under 300…
Haha, John that’s just fringing hilarious, keep the humor coming. I and hopefully most of us find it absolutely amusing and puts a big smile on our faces…😁😂😎
With T not recovering after ADT, that is very common. Many take 18 months. Others, never. Since youy are no longer on your adjuvant ADT you are entitled to normal testosterone. It does a man's body (very) much good. Start the TRT. Then just monitor such as monthly PSA at first then extend to 3 months if okay. Scans perhaps annually.. You can always stop the TRT if you need to. But you can't get the time back. (Just my opinion. I'm on BAT.) Paul
BAT is alternating cycles of very high testosterone (supra-physiologic) with periods of very low/castrate levels of testosterone and androgen signaling. There are varied regimens. In some (such as me) it can effectively control prostate cancer while preserving the advantages of maintaining testosterone/androgen benefits overall. I currently use 3 months of high testosterone then alternate with one month of Orgovyx ADT and Darolutamide. My PSA is undetectable after 2.5 years on my BAT regimen. (I am mHSPC but many use it for mCRPC).
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When ADT fails, we continue it anyway... why not Zytiga?
Would like an opinion on how I’m doing.
Is there seasonality to testosterone levels?
Vacation from Lupron/Zytiga - Temporary or Permanent!
