Wish you all the best in this hard times.nothing new in my PC journey. PSA<0.006 after 18 months of ADT.I had oligometastasis(bone) cybernife radiation in sept.2019 in Koln, Germany.The RO said no ADT to see and follow the effect of the SBRT.
BUT I did it my way and combined with ADT and here i am 18 months since then & PSA undetectable.
I don't know what to do next.Quite hesistant! Shall I have a ADT break or continue till I become resistant?
Wonder if I need any imagistics this stage and this PSA.
TA, and all the friends here any advice is appreciated .
My prayers to you all!
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Alinur
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I use 3-month triptorelin injection only.I am against using any kind of supplements except vitamin c & d and against not scientifically proven treatments .hot flashes and some weight gain so far.
Prof. Marnitz also told me to have no ADT and I had a recurrence after about nine months. However, after 18 months I would start with intermittent ADT. You can start again at a PSA value of 5 or 10 ng/ml, whatever you prefer. Or zap new mets before you reach this value.
Alinur, I recommended to restart ADT between 5 or 10 ng/ml. You can of cause get a PSMA PET/CT before that and delay the restart of ADT further be radiating the mets with SBRT.
I agree with that plan. A good way to uncover just what is and what is not still present. If you get a PSA of >0.5 a PSMA scan will be indicative and you can go from there.
If you need an ADT break for your sense of well-being, that is a legitimate reason to take a break. However, you can't rely on PSA to tell you when to stop and restart.
TA, that is why I asked if I need scans now( if PSA is unrealable).secondly, if I take a break and say , rigourously monitoring my PSA ,when it reaches around 1 have psma PETCT,radiate the visible Mets adding again ADT as long as I can support.Isn't that logically a way to reduce the burden of the cancer so that ADT can take care of remaining micomets more easily!
Maybe. There is insufficient data to say whether playing "whack-a-mole" with metastases confers any benefit. You have plenty of cancer cells floating around that you will never be able to see on a PET scan. ADT and chemo does a much better job of getting all the cells you can't see.
TA: Question for you. Doesn't playing whack a mole" confer, at a minimum, the benefit of delaying ADT and chemo? I would think that adding time has numerous benefits: delaying unpleasant SEs, giving medical science time to develop new treatment options, slowing metabolism and thus cancer growth, and raising the probability of dying from something else.
No, it doesn't, or shouldn't, as far as anyone knows. All we know so far is that it treats PSA. If you use the artificially lower PSA as a signal to stop or delay systemic therapy, you may be giving your cancer a chance to proliferate. There is no evidence that it delays progression.
By the time metastases appear on even the best PET scan, there are millions of cancer cells throughout your body. Zapping the visible cancer cells certainly kills them, but that in no way implies that it delays progression of your cancer. Maybe it does somewhat - we just don't know yet. I compare it to picking wild mushrooms growing under an oak tree. The mycelium of the fungus is everywhere throughout the soil and into the roots of the tree. Picking the mushrooms does not slow down or kill the plant. It will always produce more.
Until we have proof that there is any delay in progression by zapping metastases, it is foolhardy to put off systemic therapy (ADT or chemo). The systemic therapy is like sterilizing the soil in my metaphor.
I get what you're saying. But since zapping lowers PSA (temporarily), it's making a material difference in the total number of living cancer cells for that period of time, correct?
What if the patient undergoes the zapping once in some unit of time, say a year, for an indefinite number of years. Doesn't that confer the benefit I described, i.e., kicking the can down the road?
I'm told that I need to start IADT at PSA = 10 and remain on it for the rest of life, and I'm going to want to push that point back in time as far as I can get it.
How do you know that "it's making a material difference in the total number of living cancer cells"? There are no data to support that claim. In my metaphor, you would not be "kicking the can down the road" by plucking mushrooms.
By simply treating PSA and then using PSA as the benchmark for your decision to put off ADT, you are allowing your cancer to get established and proliferate, possibly hastening your demise.
I agree but it does take some finite amount of time for a zapped tumor to have grown to that size. Once zapped they are not going to cause any more damage. Any new tumors will take a finite amount of time to develop to a detectable size. Seems like that is time gained.
Tumors are destructive to bone and that can be a valid reason to get rid of the bigger ones. Also, if they are painful. It may improve QOL, but there is no evidence it slows down the cancer at all.
The growth rate of a tumor is exponential - slow at first, then increasing rapidly. Also, the number of tumors increase exponentially. By eliminating only known sites of cancer, you may be giving the occult sites room and resources to grow.
What is the oncological benefit of just eliminating the detectable ones? You have to treat what you can't see.
Once again, I fully advocate zapping them if it is safe to do so. Why not? I'm just saying that proof of benefit is lacking so it would be foolish to put off therapies (like ADT and chemo) that we have definitive proof slows progression and increases survival.
I stopped Lupron and Zytiga/prednisone after about a year when my PSA went to undetectable. After about a 9 month holiday, which was very nice (I dropped all the weight I gained during Lupron), my PSA started creeping up. Scans showed the PC was active but had not spread any further, still just pelvic bone mets and clear lymph nodes. At that point I went back on Lupron-only so it didn't spread further and then had radiation. That was about a year ago. I'm still on the Lupron as a matter of protocol. The MO and RO want me to be on it until October. Assuming all is well I will come off Lupron in October and we'll see what happens.
Just commenting - I am amazed at the guys on here that say they gained weight on Lupron. When I'm on Lupron, I lose weight because the ADT is deteriorating my muscle mass and my ass and legs get a lot smaller. I don't understand how people gain weight while on Lupron unless it causes them to stop working out, exercises and staying active. What do you think?
I was surprised to hear of people losing weight while on Lupron. I was warned that I'd most likely gain weight on it. I run, swim, and weight train, and watch my diet, and I still gain weight. Regardless of what I do I can't seem to stop gaining weight. Of course, I'm rationalizing that part of it is muscle gain from the weights. I do feel and look like I have more muscle mass but I realize that all my weight gain isn't from muscle. Rationalization is a lovely thing ....
I have wondered how after 5 years the question has never come up. At least you hormone sensitive sti right? That must mean your one ofnthe lucky ones that could go varying before becoming castrate resistant unless I am mistaken.
With double adt and imrt I went into an undetectable mode immediately after treatments and have stayed there until now. I do tri monthly testing and I’m
Still taking four little pink pills per day. It said to stop adrenal production of T. I did the orch in 2017 allowing me to drop the Lupron. I ask my MO . He says I can stop the adt and they will see me once a year. I’m personally afraid to only test yearly thinking that the inner hiding 3 millions pc cells will activate and eat me for lunch .. living with no T has its own set of devious delights . But I’d rather do that than have an agressive pc chomping me down at will.. been there , done that. Don’t ever let the tree down🌲 I liken my status to treading water . Five years shit, I’m going for ten. I’m in gods capable hands . Just a passenger in this game of life . Seek out the things that we love daily. Stay afloat In this leaky boat .. The captain always goes down with the ship. My goal is not to go down feeling shorted or angry with life. Row row row your boat 🚣♀️ gently down the stream . In full knowledge than no man will avoid Niagara Falls in the end .pluck the day . That’s all we have .Hope you have a good day today and years ahead of love on this earth..
Thanks Scott I have always appreciated your perspective since the first post of yours I read early last year. Got my test results this morning and PSA still undetectable. I think my anxiety is increasing with each new test. Ok for 3 more months fir now. My day started out great and I refuse to let it be anything else . Looking forward to a nice bike ride this afternoon.
Don’t let the anxiety be so . I do admit that each time I’m getting the test done , I say many prayers .. The more test that you do the anxiety should lessen.. ? 26 Psa test for me so far . The first three with a high of only 20 were the worst . Once I went undetech there was no looking back . On the other hand , the longer that I go clear ? isn’t the inevitable return getting closer? It’s a hec of a thought . I try not to think about it . We are ok until we aren’t .. live for today .. 😷✌️
Time difference! Thank you all, friends. I think I will have a break from ADT and see what happens!!Another good news. I received my after vaccination Antibody Anti-spike test result...1224U/ml. So it's time to restart Zometa which I stopped last year avoiding hospitals because of COVID.Bad idea??BTW did anyone had that test?
I took what turned out to be a 9 month ADT break. After which my PSA started coming up and I'm now back on Lupron and have undergone radiation. I don't regret taking the break.
Can only speak for myself but I have been taking a vacation from ADT for 1.5 years & my PSA is still undetectable. My life is much better without the side effects. If/when my PSA begins to go up again I will have to decide between a longer, more miserable & a shorter, more enjoyable life.
Hi, thank you for your post. It has been six years since my diagnosis. Today my PSA and testosterone are both unreadable. My Oncologist is worried about my bones. I have some disease in my back bone. Currently receiving Prolia 6 month injection. She now wants me to start raising my Testosterone . This worries me as I don't want to wake the dragon. Any thoughts out there.
what if the beast is happy in one location and doesn't want to take over the whole body. Let it live there comfortably and it won't want to expand it's destruction🧐 I know Tall Allen will love this comment. lol Don't use it against me if I croak faster than expected.
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