I asked this same question last year, but here it is again.
I’m 51 now, diagnosed at 46 - ADT for the entire time, except for a high-T clinical trial. I’ve run through most SOC and then got lucky and qualified for pembroluzimab. That was my Hail Mary and now I’m basically NED. I was undetectable PSA for almost a year <0.01 then it slowly crept up to 0.19 over the second year. Last PSA was a decline to 0.15. I’ve been on pembro for 2 years now. On my high-T clinical trial, I had a mixed response some pc declined and other areas got worse. I’m MSI-h so a lot of genetic variation in my PC.
Question: If pembro is controlling my PC so effectively what good does ADT do? And at 51 Is it still worth any benefit given impacts that result?
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Chugach
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It is ONLY indicated for a very rare (about 3%) type of genomic mutation called "microsatellite instabilility- high/ deficient mismatch repair." It occurs in many different kinds of cancer and Keytruda is FDA-approved for patients who have it in all of them.
How on earth can you maintain all that freaking knowledge in your head TA? So many of us have grown to depend upon you. Hope we never take you for granted or you find a new hobby. We’d be lost. THANK YOU!
TallAllen is friggin' amazing! I don't know a thing about him on a personal level but know that he is an invaluable resource to all of us on here. A big thank you to TA!!
I certainly plan to discuss with my MO, just looking for opinions here for me to consider in advance. What do you make of the slow PSA bump up that I experienced?
If your PSA is up since starting Keytruda, I can't understand why you are starting testosterone. Some of your cancer is not responding to Keytruda, and you are feeding it.
Thanks TA. So I suppose that PC wherever it is that is kicking out PSA, is likely not MSI-h? And the T-cells would not be able to find it? Is it then kind of like bacterial resistance to antibiotics, if you don’t kill it all, it might evolve and change? Or could the PSA be something else like some PC that was in bone or a hard to access area that the Keytruda is now finding?
I have no idea which cells are kicking out more PSA and which less. It doesn't help you to use a mental microscope. The bottom line is your cancer is activated by testosterone, so you need to withhold it.
Is there a laypersons guide to understanding the biochemical interaction between testosterone and prostate cancer? It seems to me that ADT currently is not controlling it either?
That is a difficult question to answer. I am MSI-hi and have been on Keytruda (pembro) for 18 months and Lupron for 21 months. Gleason was 10 (5+5). PSA has been undetectable now for 16 straight months. I asked oncologist about stopping Lupron early.
He said that we may waken the sleeping giant and do I want to take that chance. I decided to go ahead with the full two years on both drugs. Will wait and see what happens after that.
Waking the sleeping giant is my worry. Also Gleason 10, I have been on Lupron (only) for 4 1/2 years and have had undetectable PSA for over 4 years. I am strongly considering an ADT vacation, since the low T is taking its toll on my body. My MOs are OK with it, but I wonder if it's not best to leave well enough alone.
I definitely don’t want to wake the dragon again. But dang it seems I might have a chance for things to be even better (more energy, strength, better bone health, libido). It’s just not clear to me what value ADT has when the pembro is bringing the hammer with search and destroy T-cells.
Also just FYI - my first read was Gleason 10, a second opinion put it at 9. We are in a very small demographic of men with PC. Keep in touch and stay strong!
My oncologist uses the words: "cancer is being suppressed" . He never uses words like cancer is destroyed or you are cured. So my gleason score of 10 makes me extra apprehensive about what happens when I stop treatment.He did say that I could get back on lupron if cancer returns due to testosterone returning, I guess that I will find out when treatment stops about April of 2022
Diarrhea, arthritis in my fingers, and low red blood cell count. Since I was on the lupron and keytruda, I’m not sure which drug caused which ailment. However, Lupron most likely caused the low blood cell count.
Im only posting some thoughts, certainly not any qualified opinion from am expertise standpoint...
First is, if it ain't broke, don't fix it! No? I understand the ADT side effects and the wish to have a bump and enjoy a little vacation. But if for an advanced patient your situation is under control, why would you want to poke a stick at a sleeping tiger?
I think what was trying to be conveyed as well in reading above, is the mistake many of us make, is that our cancer isn't just one cell type or characteristic. There are many cells types of PCa, and also many genetic occurrences operating simultaneously. Sometimes a drug can work for one variant and yet there's another laying dormant. So when a diagnosis is made and it's based upon a particular variant, and an applied treatment is used successfully, we shouldn't ignore that there may still be danger lurking. This is one reason why I think some of the newer multi-drug or multi-modality treatments work better than mono therapies.
I learnt much with my MO explaining the difference between my two Genetic tests, one showing zilch with my RP, and another showing 11 different mutations just 2 years later when StageIV was found. The two different tissue samples showing two different type cancer cells and a multiple of differentiation in regard to risk and possible causation due to the very make up of the tissue. It was natural to find the aggressive markers present with tissue that was more aggressive, etc.
Anyways, my data may be wrong, but I remember coming across reference to something like 29+ different PCa cell types and over 500+ genetic markers being currently identified. Not all actionable, or understood, other than being associated with PCa.
My timeline of experimentation began at almost 65 in 2015 as a GL10
2015 = March first biopsy
2015 = April had bilateral Orchiectomy
2015 = May had the crap cryo'd out of right half GL10 prostate - no radiation or chemo
2015 = December being 7 months following cryo had Keytruda + Opdivo + Yervoy injected into what was once GL10 right half
2016 = January just one month following K+O+Y began biweekly injections of Cypionate *T*
2021 = another *T* injection 2 days ago and bicycled 36 miles yesterday
To ponder - might physically removing testicles/with added Adrenal control then using CRYO on tumor (where possible) with it's apoptosis effect and then inject K+O+Y combo into tumor site ultimately permit man made non-DNA specific Testosterone to be re-introduced whereby remaining circulating PCa cells do not recognize the "T" so no return of PCa but a return to a life of living ???
Beats the crap out of me but I'm trying it. NOTE - experiment is in progress with no SOC acceptance or FDA approval. Could kill me sooner rather than later but the end will be on my terms when I deem time and not governed by medical or religious beliefs. I am in control of my destiny barring outside consequences and do not intend to suffer, linger or put undue stress on family or $avings simply existing until my last breathe.
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