Anyone on Intermittent ADT??

[Tommyj2]

More specifically... is anyone on it and finding that their QOL is imporoved by doing it? My MO has proposed it... says that sometimes there is a linear relationship between stopping ADT and rise in PSA but that in other instances PSA can stay reduced for much longer periods of time.......

[Drcrunch]

I was on intermittent for one and a half years. I let it rise into 20, started lupron again,, but the psa went up and down fo six more months and finally kept increasing. Started zytiga at that point.

[Tommyj2 in reply to Drcrunch]

I am getting from this that you did not particularly benefit from the IADT??.... thanks for the reply... all info is a help

[Tommyj2]

Thanks for the info Nal.... I guess the real problem would be knowing that you have to go back on again after feeling better for a year : )

[tango65]

You should monitor your testosterone and see what happens with the PSA when the testosterone is above castration level. These values could give you the dynamics of the PSA in relation to testosterone levels . You could get an idea of how long you could stay without ADT.

People may stop ADT and there are not PSA changes for months but their testosterone remains at castration levels. They had continued in "free" ADT (no lupron). It takes several months for the testosterone to recover depending on the age and the lenght of the ADT. I stopped ADT and the testosterone never recover.

[Tommyj2 in reply to tango65]

Good point... in effect you have never REALLY stopped ADT if your testosterone doesn't recover.... on the other hand if T DOES recover and PSA remains low..... success.... a useful intervention...

[tango65 in reply to Tommyj2]

I agree. It could be a good thing if there is a real intermittent ADT. Perhaps it could delay the "trip" from hormone sensitive cancer to castration resistant cancer.

[alephnull]

I've been on it. Both times I felt better. I felt more "manly". But unfortunately PSA rises have stopped me in my tracks. The first time PSA went up to 0.71, I know that doesn't sound high. But it went from undetectable to .71 in 4 months. About the same the second time.

[Tommyj2 in reply to alephnull]

Sorry to hear that... Always hard to know what to do with this damn Tx...

[Schwah]

I’ve been .01 to .02 for over a year after 21 months of lupron Zytega chemo. Started a vacation two weeks ago and got a psma test just as a baseline to use going forward. To everyone’s surprise two spots lit up. Now discussing the next step. Stopping vacation, biopsy , new treatments, SBRT ??? You may want to do a psma test even at undetectable levels to help you decide.

Schwah

[Hidden in reply to Schwah]

I’ve been told that psma test can’t detect anything unless psa is .2.

[Schwah in reply to Hidden]

Yea. Me too. I was just doing the test to have a baseline going forward. My MO said I didn’t need to do it. The radiologist at Ucla that talked to me before the test said it was highly unlikely that they’d see anything but if I could afford the test then it would give them a good baseline. My PSA two weeks before the test was .01 and it had been between .01 and .02 for a year. I’d even done the test at two locations which shows the testing was correct. No clue what to do now. Stop my vacation , get the spots with SBRT, try a new treatment , do a biopsy ? My MO wants me to do an mri. I’m in uncharted waters.

Schwah

[Hidden in reply to Schwah]

I talked to a hospital in Australia that does them a lot and they told me I would be wasting my time. My psa is

.03/04/05 for last 24 months.

[Schwah in reply to Hidden]

Well they are wrong. I can attest to that fact first hand. If you private message me I can send you my report and my PSA history to show them if they day it’s not possible. My MO was shocked as was the radiologist at Ucla. In fact the incorrectly showed my PSA on the report as .2 not .02. Probably because they couldn’t believe it. But I have my actual last PSA report in hand (2 weeks prior) and had given it to them show a PSA of .01. Maybe they do so few at that level and therefore were not aware how precise their test is? Or I’m just a freak?

Schwah

[Tommyj2 in reply to Schwah]

Well that certainly sucks!!... ANY possibility that it's artifact?

This forum is both very informative AND scary as things that are taken for granted in the larger medical world out there are found to be false with the experiences of some in our group..... You think you could be safe and then....POW!!

[Schwah in reply to Tommyj2]

Probably not artifact in that no psma expression on the three spots I had SBRT. I’m waiting to discuss with Ucla drs Monday to see if a false positive is possible

[Schwah in reply to Hidden]

See my new post on same. The radiologist made a mistake and now says not cancer. 🙈 un fricken believable

Schwah

[Tommyj2 in reply to Schwah]

A lesson to ALL of us to check and double check.... mistakes DO happen.... These guys are professionals but it's also a " job" and no matter what one's level ( dealing with life and death or stacking lemons at the fruit stand) concentration is sometimes lost... sorry for your scare but glad to hear that THAT is what it appears to be?

[rococo]

Research scientists and mos tell us the longer your on hormone therapy the more mutations so intermittent cuts the duration. The key is to find the right on/off cycle that works for you. Rocco

[keepinon]

Very much looking forward to your post on getting after those dormant f*&#^%ers!

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

did you mean fuckers?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/20/2019 5:12 PM DST

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

I see you speak *&^#*.

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

Only in mixed company....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/20/2019 5:19 PM DST

[jfoesq]

I was treated intermittently with ADT (and some of the time with Zytiga as well) for several years for my Metastatic PC. I think I went off the meds 3 differentiations times but after 5-6 years of intermittent treatment, I am now on ADT continuously, and without the Zytiga for the last 2-3 years. I think my energy was improved over time when I went off the meds. I was off of them the first time for 20 months and for maybe 12 and 6 months the following times. It is my understanding that intermittent treatment may be equal to continuous for NON Metastatic PC, that studies have shown continuous leads to better outcomes for those with Metastatic

[keepinon]

I doubt you will disapoint. Most of us will never have the knowledge you have accumulated and the information you pass on will be received gratefully. But then it is up to us to decide what to do with it knowing not everything is scientifically proven. We know youvspend a ton of time on researh and this website. We thank you.

[Break60]

I had increased strength after stopping adt which helped my golf game. Unfortunately my Psa rose quickly so my vacations were no more than six months or so.

[Longterm101 in reply to Break60]

Did u break 60?

[Break60 in reply to Longterm101]

Never gonna happen. Breaking 100 is my current goal! lol

[Longterm101 in reply to Break60]

Practice the short game!!!

[Tommyj2 in reply to Break60]

Did you keep up any kind of regimen of resistance exercise while on the ADT?? My biggest fear is the drop in strength which will put an end to my enduring hobby of trail building.... I am hoping that with continued workouts I might minimize my strength loss. Don't have it in me to workout 7 days a week like some folks here but not looking for world class musculature : )

[Break60 in reply to Tommyj2]

It’s even more important to work out while on ADT even though you may not feel up to it.

[Tommyj2 in reply to Break60]

I'm aware of this.... my question is...did YOU keep up with an exercise regime that preserved a large measure of your previous strength??

[Break60 in reply to Tommyj2]

I believe I lost some strength and definitely muscle even though I worked out vigorously at least 4x per week . The amount of weight I could lift actually increased but I lost endurance and length in my golf swing.

[Tommyj2 in reply to Break60]

Well...that's not TOO terrible considering the side effects others are reporting here.... I'm about to start ADT and not at ALL happy about it.... less happy, however, about the alternative : )

[Mazdaguy]

I’ve been on IHT close to 10 years. I usually go on for like a year...and have been able to get 2.5 to 3 years off HT and normal T. When I’m off HT and PSA begins to rise I attempt to find anything using the newer scans and spot radiate if we find anything. I think it helps extend my time off, but no way to prove that. I tolerate HT pretty well, but look forward to the breaks in therapy.

I’m a g-9 guy with a history of low volume bone mets and very low PSA. Most MO aren’t crazy about IHT in that setting, but I guess a close eye on blood work is how I’m able to work with the doctors and do IHT.

[Tommyj2 in reply to Mazdaguy]

These are the kinds of stories I am anxious to hear....with all the horror stories about ADT it's nice to hear that some people are handling it reasonably well.... I'm hoping to be able to do IHT and have some success with it.... thanks for the response.... BTW... why " Mazda" guy.... ? Do you sell them or are you just a fan??

[Hidden in reply to Mazdaguy]

How high do you let PSA go before stopping vacation?

[Mazdaguy]

I guess I’m just a fan...have had a ton of them...My Miata and CX-5 being my favorite so far...

[Tommyj2 in reply to Mazdaguy]

No argument here. Great cars. My Mazda Truck was the most trouble free vehicle I ever owned...

[FCoffey]

I started intermittent ADT after 5 months on ADT. My MO wrote that "patient exhibits multiple grade 3 toxicities." (Grade 1 = major annoyance, Grade 5 = death.) I wrote in my diary that "This life is not worth living. Either we change treatment or I stop it."

So IADT. The improvement in QOL is immense and quite rapid. The severe cognitive impairments vanished in about 3 weeks, the hot flashes held on for 6 weeks. After they were gone I was finally able to sleep through the night.

It's not just sex drive that comes back, but ALL drive. All of my adult life I've jumped out of bed in the morning, curious as to what the day will bring and anxious to find out.

As a eunuch I could lie in bed and stare at the ceiling for 4 hours, and be just fine with that. I had no drive to cook, to eat good food, to exercise, to dress in clean clothes, nothing. Life without ambition and striving is pretty damned boring, and that's before you add in all the truly bad stuff that comes with ADT.

When I hear docs and others say things like IADT is "a waste of time" I KNOW that they give ZERO weight to quality of life, and I suspect that they don't want to lose the $ from repeated clinic visits, injections, etc. Cancer is very big business. There are a lot more people making a living from cancer than dying from it.

[Tommyj2 in reply to FCoffey]

I don't envy you the side effects you had from ADT and I am hoping against hope that I am among the lucky ones that has few of the lesser known SE's that make life so onerous....... I just had a jump in my psa that makes it necessary for me to push up my start date a few months ( was hoping to avoid summer hot flashes).... Seems there is no way to predict how one is going to respond to this tx beyond just doing it..... BTW... are you still holding stable with the IADT... how long are you able to stay off before you cycle on again????