Break from ADT or not?: Hi everyone, my... - Advanced Prostate...

Advanced Prostate Cancer

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Break from ADT or not?

Simonapo profile image
30 Replies

Hi everyone, my Dad was recommended 18-24 months of Lupron/Zytiga/Prednisone after Radiation Therapy. We reached that time and MO said that is up to my Dad if he wants to continue the treatment or not. Lately my dad had high blood pressure over 200 and he ended up in ER, but now the blood pressure is controlled with medication. Recently he started complaining of stomach pain maybe from taking the 4 pills of Zytiga on empty stomach, but had an endoscopy and all looks good. I don’t believe these are major side effects that should impact the decision of stopping the treatment. This is a very important and difficult decision and I want to make sure we do the right thing. My main. concern is the “persistent” activity in the prostate that still shows in PSMA PET scan: “There is persistent abnormal radiotracer activity centered in the left aspect of the prostate gland which measures a maximal SUV of 10.0, previously measuring a maximal SUV of 19.1”. MO can’t tell if is activity caused by radiation and Zytiga that are probably still working since the SUV is going down or is cancer residual. The PSA is 0.025. Your expertise and advice are greatly appreciated. Should my Dad continue with all 3 Lupron/Zytiga/Prednisone or should he continue only with Lupron or should he take a break from all 3? Thank you SO MUCH ❤️

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Simonapo
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30 Replies
Derf4223 profile image
Derf4223

Does your dad exercise (resistance + cardio + aerobics)? Has he had a DEXA scan? Exercise is said to reduce PCA mortality by up to 67%. 2 years of lupron/abiraterone saps bone density and muscle (osteopenia/osteoporosis and sarcopenia respectively.) Does he have heart/artery disease? How old is he?

Simonapo profile image
Simonapo in reply toDerf4223

Thank you so much for your response, he does exercise, he is scheduled for DEXA this week on Wednesday, no heart/artery problems, he is 85 years old. Thank you.

j-o-h-n profile image
j-o-h-n in reply toSimonapo

85 and exercises? I'm 87 and just a part time house husband. Pat him on the back for me......Cheers to him (and you)...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/05/2023 7:30 PM EST

Simonapo profile image
Simonapo in reply toj-o-h-n

thank you so much John❤️

Tall_Allen profile image
Tall_Allen

Perhaps his blood pressure is elevated because he is not taking enough prednisone. He might discuss increasing the dose to 7.5mg or 10mg.

Whether he needs a break from his hormone therapy is really up to him. It depends on how well he is tolerating having no testosterone.

Simonapo profile image
Simonapo in reply toTall_Allen

Thank you Allen, he is already on 10 mg Prednisone, he is tolerating very well no complains, I appreciate so much your knowledge, but is there any benefit for continuing the treatment as is past 24 months?

Tall_Allen profile image
Tall_Allen in reply toSimonapo

He's got distant metastases, so he will always need hormone therapy. The only question is - does he need a break?

Mascouche profile image
Mascouche in reply toTall_Allen

Hi Ta, are you certain that prednisone helps with high blood pressure? Mine was still fine while on Lupron alone but became high when I began abiraterone and prednisone 10 mg. I chalked it up to the prednisone increasing my cortisol which reduced my sensitivity to insulin. Since my treatment stopped in May, I have been able to remove one of my three high blood pressure meds and my high blood pressure is now in the normal range.

Tall_Allen profile image
Tall_Allen in reply toMascouche

I responded to the OP, not to you, and I did not say that prednisone always helps with high BP. My point was that the replacement dose for patients taking abiraterone varies from patient to patient. If the replacement dose is inadequate, BP may increase, potassium may get too low, and edema can result. The patient, as I said, should discuss this with his doctor.

Ztlf profile image
Ztlf in reply toMascouche

On five mg. prednisone, my husband was having episodes of low blood ressure. They raised it to 10 mg and he normalized but then had some hypertension! Now he is on 5 mg., and seems to be doing ok.

gsun profile image
gsun in reply toTall_Allen

But prednisone increases BP.

Tall_Allen profile image
Tall_Allen in reply togsun

When one takes prednisone with abiraterone, it replaces the cortisol that is lost. This article explains it:

prostatecancer.news/2019/06...

Mascouche profile image
Mascouche in reply toTall_Allen

Nice article but I wonder if an important aspect is missed. Cortisol is important of course but I believe there is an important difference between what we normally produce and what prednisone does. Unless under constant high stress, our body normally produce cortisol only when needed. My assumption about prednisone is that it produces cortisol constantly and if so, it because as much of a negative side effect as it is a benefit. As stated, this is only my assumption.

Tall_Allen profile image
Tall_Allen in reply toMascouche

No. Your adrenals ALWAYS puts out cortisol.

Mascouche profile image
Mascouche in reply toTall_Allen

But there are peaks and lulls, no? Cortisol being higher in the morning when it takes dominance over hormones like melatonin and lower in the evening when it is melatonin that gains dominance. Am I incorrect? I am open to the idea that I got it wrong so don't take please don't take this as me challenging you. Taking to a knowledgeable people like you and others is how I validate or invalidate my assumptions. :)

Tall_Allen profile image
Tall_Allen in reply toMascouche

It's important to take prednisone in the morning, with food.

dadsdrdawn profile image
dadsdrdawn

Get as educated as possible with everything medical, AND alternative.

I say help him focus on other things than being a "cancer patient in treatment".

I know that is hard, but have him try to be active to build muscle and prevent it's loss, and try to get him to eat nutrient dense foods, and stay hydrated.

What does he like?

Art? Music? Movies? Comedy? Old Newspapers or stories? Games? Building or drawing?

Focus on HAPPY things.

My dad passed this August after 17 years of prostate cancer, never doing chemo, and with a VITAL life at 88.

He danced at his birthday party with his walker after having a spontaneous hip fracture. He was told he had to do 3 weeks in a facility and he said HELL NO, and started doing push ups on the counter next to his walker in the hospital after pulling himself out of the bed to show that he was strong enough to rehab at home.

He DID do a lot of meds over the last 8 years, but STILL let the doctor stuff be in the background.

He was on the Lupron/Zytiga duo and only later on Pred.

He REALLY was helped with medical marijuana gummies. They helped him eat, sleep and reduced a lot of nausea.

It's legal in Michigan and I had him taking a CBD/CBN/THC combo so he never really felt high - but stayed VERY active until the last 7 days of his life.

He had 6 doses of radiation to a few large "spots" on his spine earlier in the year, but still powered through another 4 months.

He was still talking about traveling to Africa and Antartica this past July!

I will pray for your dad - he is lucky to have you.

Sent with love,

Dawn

Simonapo profile image
Simonapo in reply todadsdrdawn

Thank you so much Dawn, so sorry about your dad’s passing, but what an inspiration, the way he lived his life and his strength and happiness, thank you again for sharing his story, it is truly inspiring ❤️

swwags profile image
swwags

I would imagine at his age, his testosterone output was low before cancer. There are alternatives to Zytiga. If he has distant mets, yes he should stay on. MO should have told him the consequences. We are all different but ADT just puts the cancer to sleep. It does nothing more than that. The cancer will come back on its own over time. How much time is anyone's guess. Yes the side effects suck. Ask him why he wants to go off of them and then the real question. How long does he want to live? Harsh question but a necessary one that he should ask himself.

Also get a second opinion from a radioncologist as to the state of the tumor and whether the treatment is working. Radiation takes time to kill

Simonapo profile image
Simonapo in reply toswwags

Thank you so much 😊

Lettuce231 profile image
Lettuce231

You have locked the beast up, Dad is doing well, why let it out again to attack him.

I've been on it for ten years and as long as it works I won't change it.

I wish you well.

Simonapo profile image
Simonapo in reply toLettuce231

I agree, thank you so much 😊

raoulmaher profile image
raoulmaher

Hi Simonapo - would it be worth asking your M.O. if a change of hormone removal therapy is a good idea ? - there appear to be a lot of products and combinations - I am on full strength Xtandi and Goserelin injections / implants and although side effects are sweats and brain fog they are managable although one or both may be losing their efficacy <- last testosterone was a bit higher than normal although PSA < 0.03 - also I agree with Lettuce 231 above - I personally will not give Cancer the chance to get a better foothold than it has already so I think find a treatment that works and is tolerated - we sufferers are all different as are our treatments apparently - I hope this helps kindest Raoul

Simonapo profile image
Simonapo in reply toraoulmaher

Thank you so much Raoul 🙂

ImDD profile image
ImDD

Zytiga isn't usually the cause of stomach issues. The Prednisone is. Does he take it with sufficient food?

Simonapo profile image
Simonapo in reply toImDD

Good to know, probably he is not taking it with enough food, I will make sure he does going forward, thank you for the great advice.

RMontana profile image
RMontana

Here is a study on intermittent ADT treatment and its effects on the onset of mCSPCa (resistant PCa). It also deals with TET recovery. If my PSA comes back (one year off ADT as of this month) I will go on intermittent ADT treatment; not going back to full time ADT again. Check this out;

healthunlocked.com/active-s...

Also, PSADT (doubling time) is more important than PSA levels alone...check this podcast out on when to react to rising PSA.

healthunlocked.com/active-s...

Last, my blood pressure went crazy when I was on my 21 months of Lupron; told my RO this and he told me to "see my cardiologist." He did not believe that Lupron affected BP but it does. I was able to control it without medication but it would spike, then go back down, then go up again...drove me crazy. There are a LOT of metabolic side effects to ADT that we are not aware of when we start treatment . This may help;

healthunlocked.com/active-s...

Good luck. Keep on top of the PSA rise, measure its DT, then use the scans to catch any regression as early as possible...PCa has the one advantage of multiple attempts are "cure." We sometimes get a 2d and 3d wack at this thing if we can find it coming back early enough. Rick

Simonapo profile image
Simonapo in reply toRMontana

Thank you so much Rick for the great info, I really appreciate it.

Ztlf profile image
Ztlf

My husband has been on Lupron/Zytiga/Predisone since 01/2023. His PSA has dropped from 51 to .08 (last measured in November). He dropped the number of pills from four to three in October, and the MO has agreed for him to drop to two. He has had some issues with his BP since beginning treatment (first hypotension then hypertension) but other than that is doing well. I am of the opinion that if it is working, he should continue, but the MO was ok with the reduction and even eventually taking a rest from Zytiga., so I bow to the experts. FYI, my husband has a pacemaker secondary to a left bundle branch block and is taking an anti-seizure drug as well (Keppra).

Simonapo profile image
Simonapo in reply toZtlf

Thank you so much for all the info, best of luck to your husband 🙂

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