seek opinion about vacation from ADT

[Karmaji]

Diagnosed May 2019, stage T3BN0M1 had Two tiny spots on pelvis on Choline scan...oligo metastasis

Did RT for prostate 20 boost and extra for pelvis in nov 2019

ON ADT since July with Firmagon for a year and then 3 monthly decapeptyl

PSA 30 in May 2019 and 0.5 in nov 2019

from Dec 2019 till july PSA <0.03

From Oct 2020 PSA <0.006 ....

DRE is ok....nothing to worry

So my URO and ONCO say that I may go on vacation after today injection

and follow the PSA 3 monthly....

The same docs in July 2019 would say at least 3 years, if not more.

I would appreciate any opinion regarding this from our family members....

Thanks for reading.....

[Magnus1964]

I am not a fan of ADT vacations, (IntermittentADT). My problem is, are you giving a new line of prostate cancer cells a chance to find a work-around to the drug.

My outlook from having taken a long line of ADT drugs is take them one at time and stay with a drug for all it is worth.

[Hidden in reply to Magnus1964]

its not a vacation, best as I can tell. Its curative treatment, no?

[Magnus1964 in reply to Hidden]

a "vacation" as some doctors and patients call then are "intermittent androgen deprivation treatments". Meaning the doctors stops treatment intermittently, for a few months for instants.

I assumed this is what you meant by a vacation. Or where you referring to traveling to somewhere far from home?

[Karmaji in reply to Hidden]

as I understand it is not a vacation but the docs think that I am cured...as of now...'Question is how one know if one is cured....

No real marker...

Seems like stop ADT and see the show.....but with which markers...

The docs seems to follow PSA

No body seems to know...

It is guess work

so question is should I stay on ADT...

Already I am having 3 months injection every 5 months.

.....may be extend it to 6 months...Onco agrees but URO no comment...

Quite a story playing with APC and ADT

[TJGuy in reply to Karmaji]

Interesting. So you achieve some sort of mini vacation from ADT by getting a three month injection every five months. Meaning it wanes during the two extra months. Did I understand you correctly?This would be the first I've heard of this approach. I must have misunderstood.

[Karmaji in reply to TJGuy]

I was having fun with my ONCO ....and we said why not try EADT..extended time span instead of IADT...For a year we did 4 months and now 5 months lapse.....If does not work...switch backBut in remission the patient has to have supplementary therapy .... The Key to stay in remission.... Chemical docs ...just say good bye till recurrence...

1. Nutrition....avoiding fake diet gurus not easily

2.exercise...a must for 1H30 or more just walking uphills ...a sort of aerobic in forest

3.Intermittent Fasting...14 to 16 hrs ...may be coffee, MCT C8-C10 one spoon to go keto

4. And Mindfulness...the key to do all these things ...look at the body and feel it

5 Supplements a must as all diet is processed and does not have essential minerals due to industrial farming....

All this is highly personal adapted therapy as it will vary from one person to other....

No one fit all like chemical RCT protocol....

[RonnyBaby in reply to Karmaji]

I took an ADT 'vacation' after completing my primary treatment AND having an undetectable PSA reading for about 1 year.

I wanted to determine what my actual / current condition and state of my health was.

Assuming you are / were castrate sensitive and all scans are clear, it makes perfect sense to get off ADT and really find out if you need further treatment.

It is a LOW risk move to try to get some significant answers.

Wishing you the best on your journey .....

[Karmaji in reply to RonnyBaby]

Lot of unknowns on our life journey to include APC...It is very heterogeneous......

Each of us is different in lifestyle, in environment, health wise and mental wise and in beliefs...and in effectivity ....

Sharing is the key.....never follow any cure guru....

[Dastardly in reply to Magnus1964]

Glad to hear your policy of taking one drug at a time until it becomes ineffective. I have noticed many times on here that some guys seem to be taking a multitude of drugs. That makes me feel a little vulnerable as all I am on is my 3 monthly Zoladex. I have been on it approaching 3 years now and my PSA has crept up slightly to 0.25. My onco seems quite happy with this and I trust him. I have always thought that throwing everything at the cancer in the early stages leaves you very little to fall back on once the tumours start to grow again.

[lcfcpolo in reply to Dastardly]

Hi. To confirm though, it looks like after reading your profile you had x6 rounds of Doxetaxel chemotherapy straight off. It is great that you have had such a good response and long may it continue. However, anyone reading your post may just opt to take ADT only, which is not the usual standard of care anymore. Apologies if I have misunderstood.

[Dastardly in reply to lcfcpolo]

Hi lcfcpoloI apologise for any confusion. I should have mentioned having 6 cycles of docetaxel first since I was referring to all the drugs/treatments than come afterwards. I would hope that nobody would take my comments as a recommendation though.

Many thanks

[Magnus1964 in reply to Dastardly]

You are a wisean.

[MateoBeach in reply to Magnus1964]

Va ver evolves to find resistance to a drug while you are on it, not off of it. That is why continuous ADT always leads to castrate resistance, sooner or later, with a average of about two years. Though there are exceptions such as yourself.

[Hidden in reply to MateoBeach]

Is Magnus a unicorn? Or is this common?

[MateoBeach in reply to Hidden]

Magnus is a long term PC survivor who has his own perspective based on personal experience. Not all of his preferences are applicable to others. But we appreciate his presence and contributions, with this in mind.

[CAMPSOUPS in reply to MateoBeach]

Well said about Casodex. I mean Magnus.Seriously though it is great to have him here with us. Reminds us of possibility of long survival. Good for him and may his longevity continue.

[Magnus1964 in reply to MateoBeach]

You are correct, we are all different and respond differently to treatments. My experience is that using one treatment at a time has provided me with a longer survival time.

One thing that we all don't want to acknowledge is that the medical profession experiments with treatments. Combining some or trying intermittent use, etc.

I recall when I was being treated years ago, what was being done to me at one hospital, was different than treatment at other hospital, i.e combining treatments. Both were nationally known hospitals.

[MateoBeach in reply to Magnus1964]

Indeed Magnus, one of the most difficult areas of treatment decisions is whether or not to combine or to sequence treatments. The clinical trials seems to point both directions in various cohorts. Taking both standard ADT along with an androgen receptor drug has demonstrated improved survival in metastatic PC. On the other hand, sequencing advanced therapies (such as abiraterone then docetaxel then enzalutamide) with concurrent ADT has also shown to be of benefit for overall survival. For me, this is unclear how to sort out and probably needs to be personalized depending on aggressiveness and stage of disease. You

BTW, I too have had great success with casodex as an alternative to standard ADT. It was effective and tolerated well for nearly five years for me before it failed. Best regards, Paul

[Magnus1964 in reply to MateoBeach]

I'm glad you got so much out of casodex. I hope all your treatments work as well.

Best

Magnus

[Hidden]

Seems the Kwon M.O. is to call spots like that metastatic whether they meet all the definitions or not and zap them anyway and they go away after two years of ADT. Go to 3:26 in the video. It seems like a good idea to me. Hopefully for many years if not the rest of your life. That would be great.

youtu.be/DhxSwN3-5jw(Not working as expected?)

[Tall_Allen]

My question is-this- You treated PSA by zapping your pelvic metastases. So how will you judge if your cancer is progressing? You can't use PSA anymore. The only way to judge is to have annual PET scans, and even those do not tell you what is going on on the micrometastatic level.

[6357axbz in reply to Tall_Allen]

If new mets developed would they not produce PSA?

[Karmaji in reply to 6357axbz]

Maybe they are no more PC cells....change to some other form....

[Tall_Allen in reply to 6357axbz]

Metastases don't produce serum PSA until they grow to a certain size. There are already thousands of metastases that don't emit PSA and are undetectable.

[Karmaji in reply to Tall_Allen]

Interesting... That means PC cells may develop without any psa increase ?What about thinking that it is gone if no psa surge ?

Any other simple markers...CTC... or inflammation standard markers ?

I will thusgo for holistic therapy...nutrition, exercise,intermittent fasting, mindfulness, supplements and enjoy living as it is....que sera sera .......

If the immune system is healthy, micrometastatic guys will be kept sleepy...

Thanks for reflection...

[Hidden in reply to Karmaji]

Seems like that Kwon talk he said about 20%?40% ?? I forget the figure; of PCa cells turn into non-PSA expressive cells as a result of the systemic treatments. Which is a huge double edged sword. So they can’t be monitored by PSA and presumably more difficult to monitor with scans. But I don’t know if everyone agrees with that statement.

[Tall_Allen in reply to Hidden]

Not about PCa cells that don't express PSA. I'm talking about PCa metastases that express PSA but do not release PSA into the serum.

"Treating PSA" is different from treating PCa. Read this to understand:

prostatecancer.news/2020/07...

[Tall_Allen in reply to Karmaji]

Yes - the danger is being lulled into complacency by undetectable PSA. We don't have any good biomarkers yet, although CTC may be useful - we just don't know how to use it yet if it is useful.

You have much more confidence in the immune system than I do. I hope you're right.

[E2-Guy in reply to Tall_Allen]

Allen,

According to your reply, am I wasting my time getting PSAs after my PCa metastisized to my sacral lymph nodes? I did have the identified (via Ga-68 scan) nodes removed four years ago; however, my PSA began rising again at which time I started using the tE2 gel. My PSAs for the last three years have been less than 0.01. Now you have me somewhat confused?

[Tall_Allen in reply to E2-Guy]

I doubt it accomplishes anything to have individual LNs removed - lymph is a fluid and cancer cells move through it, albeit slowly. If it's in one pelvic LN, it's probably in a lot more, undetectably. You've tampered with PSA as a biomarker of progression by eliminating the biggest sources of serum PSA. So you have to use imaging instead.

[bean1008 in reply to Tall_Allen]

I went that route after my RP. Some lymph nodes were spotted in a G 68 scan and I had them surgically removed. In retrospect I maybe should have opted for radiation. It turned out that a few months later my PSA was on the rise again. Now I am on Lupron and abiraterone and undetectable for the last eight months. Good luck!

[E2-Guy in reply to bean1008]

Bean, Your journey with PCa is very close to what I have been through. Gleason 9, RP at 61, BCR a few years later, Ga-68 PSMA scan in Melbourne, AU for $600 since it was not yet approved in The States, 5 sacral LNs identified, 8 removed via surgery at UCI, PSA declined for awhile but started rising again, refused Lupron and started applying tE2 gel, recent PSA was 0.003; however, according to what TA is now saying my cancer may be progressing since PSAs are only partial indicators of what is going on. And I 'thought' that I was doing great!

[E2-Guy in reply to Tall_Allen]

So getting PSAs every three months for the last 3 1/2 years has been totally pointless?

[Tall_Allen in reply to E2-Guy]

Not pointless. If it rises, it is worse, but no rise doesn't mean no progression.

[E2-Guy in reply to Tall_Allen]

This is shocking information, if not devastating! Not one of my four doctors that I forward my blood test results have ever mentioned this. Their normal reply is, "You're doing great!" I wonder how many other people on this forum are aware of this? Getting scans here in Thailand without insurance is going to be a bitch since Medicare pays for nothing outside of The States.

[Tall_Allen in reply to E2-Guy]

As far as you know, you are doing great and you very well may be.

[E2-Guy in reply to Tall_Allen]

Thanks TA, but I guess it's time for another scan.

[Hidden in reply to E2-Guy]

That's what Kwon says in the video. Every six months a PET. and the PET results demonstrate cancer 7 years ahead of traditional imaging. Whether that is true or not, I don't know

[6357axbz in reply to Tall_Allen]

If there is progression, even in a micro level, and the patient is on ADT, would that not be a resistant strain? Is it correct that when the progressing metastices reach a certain size they would begin to express PMA unless they are of a type that doesn’t, which is fairly rare.

[Tall_Allen in reply to 6357axbz]

Yes-radiographic progression while on ADT/estrogen connotes castrate resistance. I'm just saying that imaging may be a better first indicator if one has "treated PSA."

[Survivor1965 in reply to Tall_Allen]

When you say PET do you mean C11 Choline PET/

[Tall_Allen in reply to Survivor1965]

PSMA, Axumin, Choline - all good (PSMA is best)

[Purple-Bike in reply to Tall_Allen]

I believe even the best PSMA PET/CT requires a minimum level of PSA (0.5?) to be able to show mets - so how can it help in when metastasis occurs in the near-absence of PSA?

[Tall_Allen in reply to Purple-Bike]

Because the 0.5 level you refer to is based on men who have not had met-directed therapy. Met-directed therapy lowers the serum PSA level. It is still possible that the untreated micromets are still growing and not contributing detectable amounts of serum PSA. As long as ADT is used systemically, those micromets are probably under control. But sometimes they aren't, so it is prudent to check every so often.

[Purple-Bike in reply to Tall_Allen]

With psa consistently less than 0.1, should measuring ALP and LDH regularly be enough to discover met growth? Combined with an annual or so FDG PET which I believe detects mets in the absence of psa?

[Tall_Allen in reply to Purple-Bike]

Bone ALP also depends on met size. LDH is not a great biomarker but should be checked. FDG PETs can detect metastases that don't express PSA. There are some experimental PET indicators (e.g., FAPI) that may prove more useful.

[Karmaji in reply to Tall_Allen]

Fully agree.....unless lifestyle change gives necessary back up...I am not the same person after Cancer... My whole lifestyle has changed to include diet, exercise and mind...... After Bandage style therapy, I have to attack the cause of cancer..my lifestyle....which takes me to individual integrative therapy.....

[Hidden]

Curious what the uptake level was to begin with on your pelvic spots. Or however it was denoted

[Danish-patient]

With a T3 prostate cancer I would not assume ADT can cure the disease, only keep it in control. Which it is doing very effectively, based on your PSA result. I would never, ever stop taking medicine that keeps my cancer under control.

[Karmaji in reply to Danish-patient]

ADT is palliative...I do not want to be in palliative journey...RT is curative as my URO says....

I have nothing against scorched earth therapies, but we can do better...

I use them knowing well the killer effects of these drugs...

100 years ago medicine took a wrong to develope toxic molecules , do not care for patient

Soon we shall have human adapted therapies with holistic approach...

These docs know nothing about diet..see what they eat...

Nothing about exercise

Nothing about intermittent fast

Nothing about mindfulness.....

I did not get one minute of advice on these items... a shame

neither from URO,ONCO,RO, family doc...all short of time and looking at the computer screens...

How many docs really know how to read scans and do correct Gleason evaluation

I take my treatment in my hands...

No protocol is there which fits all..

No diet is there which fits all as these diet gurus talk....

Actor is me and I am the one who coordinates the treatments...

docs are there to serve me and please do not blindly trust the docs...

Educate yourself and enjoy the ride till it is all over ...

My mindset does not accept that a cancer is not curative....

I do not care about clinical stuff which is reducing adaptive therapies to a lifeless number...

An immune system is part of me and keep it active....

[Hidden in reply to Karmaji]

Some of the more aggressive cancers apparently delete a immune system response, PTEN, so its definitely not a one size fits all

[nonm in reply to Danish-patient]

U could never know,,,,,,

[j-o-h-n]

Vacation? Sacré bleu!!! You live in France.... that's a permanent vacation......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/14/2021 5:52 PM DST

[Karmaji in reply to j-o-h-n]

sacré Azur...sipping Rosé...

[Hidden in reply to Karmaji]

s'il te plait, puis-je avoir un verre?

[Karmaji in reply to Hidden]

OUI un bon verre de rosé de Provence

[j-o-h-n]

I drink to your health.........mon ami...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/15/2021 7:19 PM DST

[Karmaji in reply to j-o-h-n]

To friend of 3 Goods...whatever happens

Drink! For you know not whence you came, nor why:

Drink! For you know not why you go, nor where

notre copain O Khayam