can we take a break from abirterone and predisone?

[billyboy3]

I was only IHT for 26 years until failure last December. A key to my longterm survival was the breaks in treatment so I recovered from the damage of the drugs! It obviously worked!!!

so, I have been on the ab mix for 6 months and can feel the damage it is doing. My psa is .02 and has remained low, so my thought was to try the same on-off cycle with these two drugs and see what happens!

Of course my oncologist went wild over this but when I started this journey 26 years ago, I had teo of the best start me in the three drug combo of Lupron/casadex/ Durestide and their genius worked! I did have the same negative statements from other oncologists about not going off drugs but my two boys were ahead.

I found no studies or proof that taking a break until my psa rises up and go back on will not work or result in early failure.

There is also the issue of quality of life and I opt for better quality vs staying alive a little longer but dragging my body along!

Chew on this boys, as we are all Guinea pigs being used in these last stage drugs and some of us have to push the envelope!!

Remember

LIVE LARGE AND LIVE WELL

create a bucket list and get at it!!

[Tall_Allen]

Here's the evidence we have:

prostatecancer.news/2023/04...

[billyboy3 in reply to Tall_Allen]

Thanks, what a gong show. The fact is I made it for 26 years by doing the IHT route and it worked like a dream. The question is now that I have metastasis in 5 spots as per f18 test which I finally saw, would I still get benefit from off cycles ?

Lastly, would there be a benefit to having the spots noted on the f18 test blasted? No cancer was detected with reg ct scan. Psa went from 5 to 55 in 5 months after IHT failed.

Psa dropped from 55 to . 02 while on abirterone and predisone over past 6 months.

[Hidden in reply to Tall_Allen]

Who funded the study you cite?

[Tall_Allen in reply to Hidden]

Which study? What's the difference?

[Docker53 in reply to Tall_Allen]

Just a quick question on your link. My husband has been taking Calcium supplements and Vitamin D daily along with the 1000MG of Abiraterone and 0.5MG of Dexamethasone. Should my husband not take calcium and vitamin D?He was on Xgeva for two years, then he was put on a break from Xgeva for 5 months, now once has put him back on the Xgeva injections once a month.

As well, the Oncologist changed hubby's Prednisone to Dexamethasone two months ago because he said sometimes the Prednisone doesn't do it's job with the Dexamethasone. Hubby's PSA keeps doubling every month. Last month he was at 114.2

His next appointment and bloodwork is Wednesday.

[Lieto55 in reply to Docker53]

Calcium and vit D are to maintain bone density. Taking a supplement (my choices Jarrow:Bone Up or Wellness Resources: Bone and Joint Helper) for bone density that included magnesium, D, trace elements (boron etc), was my path as we are already getting enough calcium but absorption is the issue. Calcium by itself isn't as helpful IMHO.

[Tall_Allen in reply to Docker53]

If his levels are low, he should supplement, otherwise not.

[Docker53 in reply to Tall_Allen]

Thank you. Allen do you have any comments on why they would change from prednisone

[Tall_Allen in reply to Docker53]

Sometimes it works better:

bjui-journals.onlinelibrary...

[Doctorsceptic]

Hi. I am on your wavelength. Quality before quantity is paramount.

I’ve been going since 2009 - surgery then RT in 2012, then recurrence with +ve PET bone meta about 3 years ago. Having had ADT plus enzalutamide followed by apalutamide , bad side effects, came off the lot. PSA now creeping up again and got 2nd opinion from experienced oncology prof Edinburgh. He recommended that I just go on intermittent adt; whenever my psa gets to between 1 and 5 then restart. If I become resistant then Abiraterone +5mg pred.

I am 78.5 and on that regime he reckoned the 26 bus would get me before the PCa.

So yes, intermittent is rational. There is literature on intermittent adt and little outcome difference from continuous. The other thing to remember is that testerone deprivation increases cardiovascular risk, dementia etc so that must go in the equation

Bottom line - you are the boss so hold the line and don’t let yourself be bullied by your oncologist.

PS how old are you?

[billyboy3 in reply to Doctorsceptic]

73, I have the most experience on our site with intermittent hormone treatment so know the positive impact in having an off cycle

The argument that I will create these monster cells to appear during these on/off cycles may be true but there are so few of us who have tried this with the new drugs, in my case abirterone/pred that it is not known. I will try this in another two months no matter what.

[Mike58 in reply to billyboy3]

Wow, you were 47 yo when you were diagnosed. Must have been tough at that age. It’s tough at any age, but in your 40’s - wow, what a bummer.

Anyway you’re still with us and it seems like you have enjoyed a pretty fulfilling life. Good for you.

Here’s hoping you can get another 26 years or so and hit the big 3 digit birthday. 🥳

[billyboy3 in reply to Mike58]

Thanks. I mist my best pal who died at 54. I only got tested because of his pc. I went into surgery same day he went into palliative care, died 10 days later. -like yesterday.

I have tried to max out every aspect of my life for him and a few others, have done lots of fundraising and or for pc,

Mr motto is live large !!!

[Mike58 in reply to billyboy3]

To die at 54 of PC is indeed very sad. But a heck of a lot of treatment improvements have occurred since 26 years ago and in fact even in the last few years we are seeing more and more improvements being made. I'm from Australia and only a few days ago there was a national report on TV saying that the way they are now treating PC and with new treatments coming up, they expect that no one will die of PC within 10 years.

Let's hope that this will be true and good on you for living life to the full and helping others with your fundraising efforts.

[Doctorsceptic in reply to billyboy3]

I find it interesting that some oncologists feel it is their job to frighten patients into accepting whatever they offer. In my view it is their job to present the case dispassionately, always offer alternatives even down to doing nothing and to help the patient through the dilemmas. So many don’t even know what we the patients really want out of life and downplay the risks of treatment. It was only after I had a bad experience that I went to the literature and really really discovered all the downsides especially on the brain. And I’m a retired doc for goodness sake.

[dhccpa in reply to billyboy3]

Don't forget about tapering the pred. Or at least reading up on it.

[billyboy3 in reply to dhccpa]

Thanks, one has to be careful and set this up carefully

[BigTom123]

Try mono therapy of Xtandi or Nubeqa?

[ulfhbg in reply to BigTom123]

Hi !

What would be reason for that if He’s still responding to Testosterone suppression and seems to be able to do intermittent ADT (26 years is really crazy to still respond)?

Best wishes - Ulf

[billyboy3]

I want to recover as much as possible and lessen the impact of the drugs.

As a side, I have cut my dosage of abirterone to hold dosage and all ok thus far. It begs the question if further reduces it to 1/4.

I can also advise that lupron injections taken over time do NOT offer the same protection as monthly!

I and my medical crew tried to get test results from the manufacturer many time over the years on whether 3/6/12 months still had same effect as monthly dosages. They refused to allow us to view any tests they said they did.

It is only common sense that a man who weighs 140 lbs and is fit is not going to have lupron work the same as a guy who weighs 250 lbs yet the dosage is the same!

Thus, somebody needs to look at the dosages we are given as some divine rule we must follow.

I gave taken monthly for 26 years and will not change to 3/6/12 month as I am being pushed to do.

Drugs cost us a fortune and it would be a game changer for some if they could take less and have the same effect on our cancer.

Last note, I went to India and hit abirterone for $180 US per 60 pills, cost here is $2400 US so why is nobody looking into this disgrace they is preventing many men from getting needed drugs because of this insane markup!

Enough bad news for today boys!

Stay well live large !!!!!

[j-o-h-n]

Not only do you have to push the envelope, you must remember to always lick it....

Good Luck, Good Health and Good Humor.

j-o-h-n

[billyboy3 in reply to j-o-h-n]

Haha my funny guy!

Lick something is now only a memory

[j-o-h-n in reply to billyboy3]

Now you're splitting hairs........

Good Luck, Good Health and Good Humor.

j-o-h-n

[billyboy3 in reply to j-o-h-n]

Very good my friend!! Haha I neeee the laugh so thanks !!!!

[timotur]

Congrats on a long run BB... quite impressive... wish you the best...!

youtube.com/watch?v=cX-4AC4...(Not working as expected?)

youtube.com/watch?v=k92ETEq...(Not working as expected?)

[Stephen399b]

Diagnosed 4 years ago (age 70) with Gleason 4+3 and PSA never higher than 8. Found mets in skull, spine, hips, pubic bone so started on Abi, prednisolone and Prostap. Reduced PSA to undetectable but progressively side effects got worse with bone pain, headaches, tiredness and awful QOL. Also have a blood cancer, so take chemo capsules, which makes other chemo more complicated.

Eventually had to start taking Oramorph for pain, which completely zonked me out, so decided to stop the 3 PC meds. Oncologist was not keen, but understood reasons and has been supportive. Stopped in April 2024 and PSA still undetectable and I feel much better and clear headed. Doing more things, although still get pain. For me there is such a positive.

I understand that PSA s going to start upwards at some point as the cancer wakes up, but we have agreed that we will deal with that when it happens.

Only my personal experience but for me QOL is as, if not more important than duration, especially on the evil morphine.

[billyboy3]

thanks and rock on my friend! Keep us posted!

I eat oxycodone immed release. Causes constipation but gets rid of pain to level I can tolerate.

I am very surprised you have that level of cancer given low psa score!!!???!

[Stephen399b in reply to billyboy3]

It was a surprise, but apparently some people don't have PSA score as a reliable marker.?

[billyboy3 in reply to Stephen399b]

Yes very odd and we need more information on this. I knew dr. Murphy who discovered psa test. He would be shocked that it is still used to the extent it is today. Most of our treatments today are still based upon psa results.