I don't know any valid reason why I should continue my testosterone zero state any longer.. I became "castrate resistant" after about 3 months on my initial ADT (Firmagon) and since then I have continued having similar injections which seemingly have no reaction to my pca state. The only reason I have continued with ADT is that it seems to be on the top of the list when it comes to trials elegibility.
The oncologists usually tell me it is to mop up micro metastasis or similar bs !
When I'm in between treatments and relying only on ADT my PSA doubles in a matter of weeks and my cancer grows out of control. I've had docetaxel, cabazitaxel, radiation (3) Xtandi, immunotherapy, parp inhibitor, etc
Looking for answers from some of you smart guys out there.
John
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You will hear from others with the rationale, which escapes me at this late hour in MST. I, like you, will be on first line (Eligard, Lupron, etc.) ADT for life. Why? Because most, but not all cancer cells must have testosterone to thrive. We have to keep those at bay and attack the cells that can survive without testosterone with other treatments.
I just can't see how my psa can double any faster with testosterone than currently without it. Is it possible the cancer now has evolved to be now using lipids as its main fuel and focus should be on the fatty acid- tumor pathway.
Well, my urologist had me try a "Lupron holiday" for a year. In that year my PSA went from hovering near zero to over 2. The rest is in my profile...mets and all.
Back on Lupron now, for life, even though my PSA has risen back to around 1.5. Some variation in my PSA is likely caused by the Provenge immunotherapy I had in Sept-Oct 2019.
Prostate cancer is always hormone sensitive. The cancer initially is castration sensitive (castration levels of testosterone controls the cancer) and eventually becomes castration resistant (castration levels of testosterone can not control the cancer). One of the changes in the cancer when it becomes castration resistant is an over- expression of the androgen receptor. In other words the cancer has more AR to respond to testosterone, it becomes exquisitely sensitive to testosterone. If one let testosterone go higher when the cancer is castration resistant, the cancer could progress very very quickly.
What you don't understand is the many modes of castration resistance. One of them involves the "amplification of the androgen receptor (AR)." This means that there are multiple copies of the AR on every cancer cell. Because of this, even the tiniest amount of testosterone causes the AR to get activated, which causes cell replication. It becomes more important than ever to control the amount of testosterone in your body.
I hear you, but logic takes a back seat with cancer:
"Studies have shown that CRPC is not resistant to ADT, but rather hypersensitive to it. Treatment-mediated selection pressure during ADT causes the AR to amplify, and ensure the situation does not escalate, ADT is continued to be administered in the mCRPC setting."
We are not doctors but please send me more information as the your psa and history, gleason score and all treatments to date. My surprise is how soon you became hormone resistant-not good news to say the least but send more information.
Prostactemy July 2013 - extracapsular extension, seminal vesicles clear, 19 lymph nodes removed ( all clear) Gleason score 4+3 large tumor mass !! 12 cm3
Initially post surgery @ 10 months later psa undetectable.
As psa steadily rose radiation to the prostate bed was considered, at the 11th hour that was canned. Theory was the cancer had spread further afield remembering all lymph nodes in the groin (R) had been removed. The right side of the prostate gland is where the tumor was pushing through.
ADT was considered, psma/ pet scans were performed with no conclusive results.
The psa slowly crept up but 2 months between Oct - Dec 2014 it dropped back from 0.2 - 0.086. I think this is when I hit the juicing hard, tried the alkalizing protocol, drop off the beer etc
Buoyed by the drop in psa I went hard at all of the above, lost a lot of weight (15 - 20kg) that's from about 90 kg. -6ft tall.
Subsequent PSA readings steadily rose so I ditched the above protocol and went back to normal life.
2015/16 psma/pet scans not showing much and I can't find too many records here but I think psa got to about 2.4 . No treatment since surgery.
About the beginning of 2017 I was having issues with constipation. With this I started to experience pain around the back near the tail bone. This pain was quickly ramping up and I remember having to lie down and hope the pain would pass - after about an hour I was ok.
psma/pet showed something happenimg around the sacrum, this was out of the euroligist's field so he referred me to a Radiation oncologist, I should mention however the the euroligist gave me my fist hit of Firmagon after viewing an MRI the oncologist had me do.
Firmagon although a pain worked a treat with the pain, almost overnight I was back to normal.
26/04/17 - psa 0.091 Firmagon
15/05/17 - 30/07/17 - radiation to sacrum plus Firmagon
X-rays showed sacrum clear however mets now in liver and lungs
06/10/17 - psa 0.82
08/11/17 - psa 1.9
11/12/17 - psa 3.0
Jan 2018 started docetaxel
13/02/18 - psa 0.30
26/03/18 - psa 0.39
11/07 /18 - psa 7.1 Firmagon ? possibly moved on to the 2 monthly injections.
@ 11/07/18 started trial nivolumab + rucaparib. Liver biopsy was taken between radiation and chemo., genome tested Brca2 mutation in tumor.
09/10/18 - psa 0.40
03/12/18- psa 0.31
02/01/19 - psa 1.0
29/01/19 - psa 2.4
19/02/19 - psa 5.9
Trial aborted
Feb /19 - stereotactic radiation to liver mets
12/03/19 - psa 3.1
10/04/19 - psa 0.27
26/04/19 - psa 0.10
14/05/19 - psa 0.065
11/06/19 - psa 0.31
09/07/19 - psa 0.7
All bone scans and chest abdomen pelvis show up only liver mets in right lobe.
Trial started around Sept 19 : Ateluzimab plus CPI-444 ( something like that)
In general I seem to have really good response to most treatments especially radiotherapy. Hopefully with the adjunct chemo this time and the effects of the SIRT I'm hoping for a more durable response. But talk about a roller coaster !
This is a summary of the war we advanced prostate cancer guys face. The clock ticks, we can bomb the enemy as many times as our bodies can handle, but at the end, as with everybody-not just us, we will die.
This is why I wave the flag so much to live large, get things in order and rock on for as long as you take, do as much as you can do.
Dear john this has been some incredible hell for you going in and out of many treatments..I understand your desire for T to return. I’ve had none for 41/2 yrs myself ..In my case continued adt has depleted me in many ways . But without it I’d be gone by now. We are all so different in how we accept or don’t accept certain treatments . Personally I’d stay on adt if there is even a chance it might help...This dammed disease is a maize and a trap for us all . I hope that you can get some reprieve from the storm .. Do what’s best for you . Scott🌵
Thanks Scott, just had the lupron injection today, the evidence as presented seems to be overwhelming for continuing ADT plus I had a decent reaction to the SIRT operation, psa 14 down to 0.75 in less than 4 weeks which may have swayed my decision.
This is a copy/paste explanation, very seldom performed in the prostate cancer setting, usually primary liver and colorectal cancers.
What is selective internal radiation therapy (SIRT)?
SIRT is a way of using radiotherapy to control cancers in the liver that can’t be removed with surgery. It is a type of internal radiotherapy. It is sometimes called radioembolisation or trans arterial radioembolisation (TARE).
Your doctor puts tiny radioactive beads (called microspheres) into a blood vessel (artery) that takes blood into your liver. The beads get stuck in the small blood vessels in and around the cancer, and the radiation destroys the cancer cells.
As the radiation only travels a few millimetres from where the beads are trapped, it should cause little damage to the surrounding healthy tissue.
I don't mean to tell you something here you already know - I'm just offering what I can think of.
Do you exercise vigorously and as often as you can, even if you don't feel like it? In many ways, exercise can substitute for T. It helps physically, psychologically and emotionally. Even though we think of testosterone as giving us the energy and ability to exercise, it's a paradox that if you can exercise, you're in a better position to handle having essentially zero testosterone. Exercising itself can make you want to exercise. Taking the first steps can be a matter of will, mind over body, but at some point the body says, OK, I can do this.
I'm so glad you mentioned exercise in this discussion because I try to do my best by going to a local health centre /gym 3x weekly for example and I definitely have put on muscle and feel better generally in both mind and body. I have struggled lately after battling fatigue but that can be addressed in a separate post later but thanks again for your reply
I added a Peloton....the best choice I could have made...I am on Xtandi get up at 6am and go until 9:30 or 10...Feel great...and It does drive you to do more lifting .....I posted a separate blog discussing the Peloton in detail.....Blue Skies , Sky King and Penny (woof)
To play devil's advocate here. What about using transdermal Estriadol (patches or gel). If I'm not wrong they are re-looking at it in an arm of the ongoing "stampede" trial. If it does the same thing as ADT without the side effects and is much cheaper - is it perhaps that docs continue to treat with the "standard" protocol of Lupron/Eligard etc because failure to do so would land them in big doo doo? (not following accepted protocol).
He he thanks for the reply - question mark noted - I was sort of hoping for more opinions on this - in my case I pay everything out of my pocket so 1000 Malaysian ringgit every 3 months for an injection for the rest of my conceivable life on earth will eventually add up. I could see my onco's face light up when I showed him the gel I was using. However he recommended the Lupron injection despite a steady drop in PSA. Now down to 0.16 after DX in 2018 at 425. (all the while on Lupron and a bit of Zometa).
The Lupron has done its job... Thats a great drop .. now keep it going. Done gave used Lupron for 17 or more with success.. it sure takes a toll on is recipients though doesn’t it ?? We need hang in until they discover something new. Lupron has been around for forty years. As long as it’s working . Be thankful. I’m sorry you didn’t get more feedback. It’s the same with me . My MO say” nobody knows exactly what We should being doing with you now”? I dropped Lupron shots with an orchiectomy 9-17. I take 4 pink pillls per day to keep me undetectable with t=3... an altered state of affairs for us men . Take care Alicat..
Thanks for that... I did consider orchiectomy... And still am I believe though the side effects are similar to Lupron, hot flushes and sweating like hell. All that has gone with the use of transdermal gel.
I'm curious about the 4" pink pills"- may I ask what they are?
They are a defunct test adt drug called tak-700 from taekada japan . It failed most but for some odd reason I’m doing well . No visible signs of pc . Good job with the gel. I dream of a change. My dr is apprehensive to make any changes because my blood work is so good. We know that with apc nothing last forever. We all are on borrowed time. Take care Alicat 1..That’s a beautiful Buddha in the pic . 🙏🏼🕊
OK I see. Well you're either "lucky" or the pink pills really are doing some for you! There's so much going on behind the scenes in research etc. I guess we'll never know the truth.
Just so everybody understand, ADT is deadly and not some walk in the park. The longer one is on it, the greater are the side effects, and even for those who get on IHT, wherein we have breaks in which to recover some functions, the fact is, we are in rough, very rough territory when we make the call to start ADT.
The facts are that we will live longer by doing this, however, we will suffer from the treatment as well, so there is a tradeoff to make, as with fighting any serious illness.
The choice is live longer and have a lower level of quality of life, or not. I think it would be foolish to NOT start on ADT at the earliest time possible, use the IHT process for as long as that works before you have to remain on ADT.
Exercise, as well as good eating habits, will help to ward off the side effects but you will not bounce back to your former self, that is the reality.
remember that you are fighting a killer disease that CANNOT be killed, as of today, so expect that whatever is thrown at is, is going to tough on you that is the sad reality of getting advanced prostate cancer!!!!
ADT works, it does prolong life, if lucky for many years, so there is NO option that works, so not great news for us, but it is what it is, we are very sick guys.
Thanks all for your replies. I'm still left wondering though, why some docs don't get brave and say "hey you know what? Instead of ADT meds which are going to Fuck royally with your QOL, you can just use Estradiol transdermal gel or patches". Is it a big pharma thing?
Alicat, it is not abouting getting brave, most of us will die of advanced prostate cancer, how would you like to be a doc in knowing this, that NO matter what he does, you/we are still going to die??!!
THE REASON THAT WE ARE GETTING THE SCIENTIFIC MEDS THAT WE GET IS BECAUSE THEY WORK, get it, they work, not great, not forever, but the drugs of today give us the BEST and ONLY option to prolong our lives, and perhaps reduce our suffering in the process.
There is NO conspiracy to stop with that nonsense, please, you are only creating fear and diversion in terms of treatment options that new guys new to consider and get on.
Unless you have evidence of wrongdoing or some conspiracy, stop saying these things on this site, please, have consideration for your fellow man!!!!!!
Hi break60 - I've been using Estriadol transdermal gel for 6 months. It's worked wonders. My onco advised me to keep on with it but nevertheless reccomended the Lupron injection. He is a specialist in his area (PC) and I felt he was giving me the standard treatment with a nod to the Estriadol. It has been discussed before on this forum so I won't pop in links to the relevant studies. Suffice to say the industry seems to be taking a new look at what was once a common protocol but discontinued due to blood clotting problems. For those unsure have a good look at the various arms of the ongoing "stampede" trial.
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