K I S S, yes trying to keep it simple... - Advanced Prostate...

Advanced Prostate Cancer

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K I S S, yes trying to keep it simple. A Lupron vacation after 2 yrs on & Abiraterone(250mg) & Prednisone 5mg? Yes or no?

depotdoug profile image
34 Replies

Well, discussions with my med oncologist June 3rd did entail the possibility of stopping my Lupron 90 day injections this Sept. Notice I said possibility.

1. I've had two successful CT scans of my abdomen/Pelvis this year(primarily to detect my severe diverticulitis) both scans showed no 'cancer lesion' existence.

2. Repeat my 90 day PSA labs 08/25. Plus CBC and Metabolic profile labs

3. August 30th I do a new 2021 NM Techicium-99 total body bone scan.

4. August 31st meet with med Oncologist for decision after results of # 2 and 3.

Doug's composite PSA Total Ser QN Year 2021 -2020 – 2019 I performed below interim PSA Lab one (~1) month before my 90 day scheduled PSA’s end of August 0.200 ng/mL Date: July 30th 2021 08:11 a.m. Testosterone Serum level < 3 ng/dL July 30th 2021.

My past two year PSA lab reads are____________________ 0.200 ng/mL Date: Jun 03, 2021 10:16 a.m. 0.654 ng/mL Date: Mar 08, 2021 08:04 a.m. 0.840 ng/mL Date: Dec 18, 2020 01:25 p.m. 0.800 ng/mL Date: Dec 15, 2020 11:20 a.m. 0.536 ng/mL Date: Nov 17, 2020 09:21 a.m. 0.485 ng/mL Date: Sep 18, 2020 10:10 a.m. 0.754 ng/mL Date: Jun 08, 2020 07:31 a.m. 1.032 ng/mL Date: Mar 10, 2020 12:00 p.m 1.100 ng/mL Date: Dec 10, 2019 08:00 a.m. 8.566 ng/mL (High) Date: Sep 10, 2019 11:35 a.m. 14.393 ng/mL (High) Date: Aug 20, 2019 04:06 p.m.

Dx prostate cancer June 2005. PSA 7.6ng/mL and Gleason 3 + 4 = 7. I opted for 42 IMRT radiation zaps Oct-Dec 2005.

Final comment: Why am I leaning on or toward a possible Lupron vacation, carefully monitored with PSA and other labs, monthly?

Improvement on my cardiac health. Reduce SE's from ADT. Reduce chances of further AFIB. Watch monitor my cardiac EF %. Help my ICD/pacemaker functioning. Not saying I will or not saying I won't stop Lupron injections without the facts. That's enough said for one night.

Doug

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depotdoug
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tango65 profile image
tango65

If the treatment with abiraterone (Zytiga) continues most probable the testosterone will remain at castrate levels since the synthesis of testosterone is blocked by Zytiga, The clinical trials were done with ADT plus Zytiga, but it is possible to reach castration levels of testosterone using Zytiga alone..

ascopubs.org/doi/abs/10.120...

depotdoug profile image
depotdoug in reply totango65

I did look at that report you provided tango65, scanned it, read glanced thru it and agree there is a need for AA(abiraterone Acetate)/Prednisone treatment for me, maybe.Question I still have is do I/we oncologist increase my AA to 500 or 750mg?

tango65 profile image
tango65 in reply todepotdoug

After stopping Lupron , the testosterone will remain at castrate levels for several months in most of the patients. If testosterone increases above 20 it may be the time to increase the dose of Zytiga.

My understanding of the cardiovascular complications of Zytiga (hypertension, edema, hypernatremia, hypokalemia and associated arrhythmias) is that these complications are caused by an increase in Aldosterone. These complications can be avoided by adjusting the dose or prednisone and/or using an aldosterone receptor blocker. Inspra (eplerenone) and spironolactone can block the aldosterone receptors.

depotdoug profile image
depotdoug in reply totango65

Interesting comparison, and facts. Yes i have hypertension, had edema or have, hypokalemia, and defintely persistent, paraxsymol, and had constant AFIB. Trying to reduce all the above, more importantly not not returning to Persistent AFIB.

I had a ‘successful’ RF cath ablation May 2020. Only two episodes since.

1. AFIB for 2-3 min 2. AFIB for ~~ 8hrs.

Trying to reduce my weight, did drop down to 181.0#’s this Wed.

Thxs tango65

tango65 profile image
tango65 in reply todepotdoug

Atrial ablation to control AF is not a failure free procedure. The only randomize control study showed that around 30% of the patients start having AF after 4-5 months and 50% around 2 years. It seems you are in paroxysmal AF, perhaps it may be time to consider meds again since AF episodes beget more AF episodes. (See Fig 6 in this link),

jamanetwork.com/journals/ja...

If your are having hypertension and hypokalemia, it may be the time to increase the prednisone or to start eplerenone,

depotdoug profile image
depotdoug in reply totango65

Yeh i should increase my Prednisone from 5mg once a day to twice a day.

Ask me why my Onc and I changed Pred to once a day??

AFIB … no I had been in NSR for 380+ days since my super RF cath ablation 05/06/2020.

Great news and on no Anti-arhythmia drugs. Just Xarelto blood thinner of course.

depotdoug profile image
depotdoug in reply totango65

Yes bring my Prednisone back to twice daily. 10mg daily…

I’m trying to do everthing i can to remain AFIB Free… I we know that feeling when AFIB hits our hearts electrical system.

My 1st ablation was April 2015. Cryo-PVI Ablation. Not so successful.

tango65 profile image
tango65 in reply todepotdoug

I wish you the best of luck with the treatments of the PC and the AF.

GP24 profile image
GP24 in reply totango65

Do you know a similar study with Enzalutamide or Apalutamide without ADT?

tango65 profile image
tango65 in reply toGP24

No, but it is quite possible these drugs without ADT may work in controlling the cancer for a while, similar to what happens with bicalutamide. Perhaps the testosterone may go up.

GP24 profile image
GP24 in reply totango65

For me these drugs are Super-Bicalutamides 😀

I am only aware of this single arm study: europeanurology.com/article... But there appears to be no randomized controlled trial that reported results.

A few patients reported in forums that they take Darolutamide without ADT. They are very satisfied because of low side effects. This is what I would expect.

dhccpa profile image
dhccpa in reply totango65

Didn't realize that. I thought Zytiga was an add-on.

Schwah profile image
Schwah

I’d prefer to see you get to undetectable before you take and drug vacation.

Schwah

depotdoug profile image
depotdoug in reply toSchwah

Thanks Schwah. That could mean upping my Abiraterone from 250mg to 500mg or 750mg if I understand that drugs power.

What do you think?

I’m taking 250 since i have multiple cardiac concerns.

Probably could feed my cardiologist and electrophysiologost that info(250mg 500mg or 750mg Abi.

Doug

Schwah profile image
Schwah in reply todepotdoug

I can’t really speak to the risk reward equation of the impacts on your heart vs the cancer. You’ll have to speak to your oncologist and Cardiolgist and try and make that decision.

Schwah.

depotdoug profile image
depotdoug in reply toSchwah

Yes, I am going to do exactly that. In fact I'll send message to my Cardiologist(s)/cardio NP and my EP (electrophysiologist) as well.

It should be some interesting conversation insight. I do have(now my 5th EP doctor) who is very skilled at managing different cardiac/cancer drug interactions.

I have to agree with Schwah. I think that psa has to be <0.1 otherwise you won't be on a vacation long enough to gain any benefit. Have you considered moving from Lupron to Orgyvox, which seems to have a better cardiac SE profile.

While combo ADT +Zytiga has proven benefits, your situation, with intermediate risk pca, may well benefit from mono therapy for quite awhile.

Good luck!

PS, I hope your still hitting that PF several times a week.

depotdoug profile image
depotdoug in reply to

Answers: I have not seriously considered Orgyvox as of now. I have heard about it, yes. ? Does most insurance now cover most of the Orgyvox RX monthly script?

? Time to call my insurance company after lunch.

Yes, Absolutely love my P. Fitness workouts. Once daily usually twice. Today is "Leg" strength building muscle day. Better get my body going now. Thanks for remembering P.F.

I'll check on Orgyvox after lunch.

Doug.

London441 profile image
London441 in reply todepotdoug

I’m excited for your prospects of a long and beneficial vacation, but concerned that so much emphasis is being placed on treatment options, scans etc but almost no mention of dedicated hard exercise.

The importance of this is obviously known, most people don’t do nearly enough. Most older men especially, and ESPECIALLY most older men on ADT drugs.

What is P fitness? What exactly are you doing, and how regularly? With the health issues you mention, it’s likely that intensifying your commitment to increasing muscle mass and cardiovascular fitness is the only way you can expect any length or quality from a Lupron vacation.

.

depotdoug profile image
depotdoug in reply toLondon441

Appreciate your serious inputs London441. First Planet Fitness is a national US Fitness workout exercise center I go to.Yes, I frequent my close to home Planet Fitness (Gym) once daily usually twice daily seven days a week. I do have a concerted designed workout program from one of my two personal fitness trainers.

Here is that workout routine I've been doing since Dec 2019!

_________________________________________________________________________

>> Monday and Thursday are LEG days. This is leg press, inner and outer thigh, leg extension and leg curl.

>>Tuesday and Friday are CORE days. This would be back extension, abs machine, and torso rotation. Plus, you can add in planks, side planks, and shoulder bridge.

>>Wednesday and Saturday are UPPER BODY

days. This would be chest press and seated row, lateral raise and chest fly and rear delt could also add in overhead press and lateral pull down.

>> Each day you could do cardio work twice. I had the morning cardio session at a little bit higher AM intensity 60 to 70% of your maximum effort, and the evening PM cardio session could be longer and more PM relaxed at 40 to 50% of your maximum effort

__________________________________________________________________________

Yes, I am sticking to that routine as much as possible 6 days a week.

I love my physical exercising daily, its relaxing, it's very good for my cardio health, and keeps my muscles strong and flexible(?). Strong yes.

I need to do more stretching before workout and or after.

What do you think London441? I am off to P. Fitness in 15 min.

Not gonna stop my exercise life. It may even get better on a brief Lupron break. I said may.

Thanks,

Doug

London441 profile image
London441 in reply todepotdoug

What do I think? Lol. It’s impossible to evaluate what you’re doing, but that’s not your fault. It’s kind of mine for asking.

This is because intensity, effort, fortitude, balls whatever you want to call it is truly an arbitrary thing.

I have seen fitness programs, workouts etc (especially was checking them out in early days of pandemic) that were waaaay to easy for me to get anything out of.

On the other hand, I have elite athlete friends, even older ones, that I cannot hang with.

This has always been the case for me, not just since I’ve gotten older, Pca etc.

Example: I used to be a competitive runner. I was gifted; I ran marathon almost right after I took up running, so essentially with very little ‘base’. But of course I was young (31) and full of the nonsense young men are full of (what’s that called? Hubris…stupidity…testosterone?) I trained for only about a month-totally wrong for a first marathon, especially for a inexperienced runner.

I ran a 3:30. Not elite class, not even close. But under the circumstances pretty good I’d say.

So, full of more hubris, I started training with a few badass runners I knew. These were 3 hour, sub 3 hour marathoners. They brutalized me every run.

I got better, but eventually lost interest when I realized how much work it was taking me to shave precious seconds off my pace. I took up 10k racing instead and had a PR of 36:47 at age 42. Very proud!

And yet, though I had finished 11th out of 3,000, I knew that the best runners in this race-hardly a big time one-were FIVE MINUTES FASTER than me over the 6.2 mile distance.

Of course, when I ran with my 9 minute/mi buddies it was like taking a stroll😀

So, all this to say only you know how much you’re getting done. I’m glad you have a trainer. The ones at my gym don’t push their clients nearly hard enough in my opinion. They are being safe I know. But at some point results matter too.

Keep it up-and know your numbers! Lipid panel, glucose, fat percentage, blood pressure, resting pulse, max heart rate, recovery rate, all of it! That helps you to train as hard as you safely can.

As my old trainer liked to say, ‘If it doesn’t suck, we don’t do it’

Not for everyone, but I can say from much experience that most older people are way too worried about ‘overdoing’ it.

depotdoug profile image
depotdoug in reply toLondon441

Like my Cardiac NP Leah tells me, she knows me way to well, "listen to your body".I can say that I've got the strongest legs, calf's thighs, upper chest muscles, arms(biceps/triceps) that I've ever had in my adult life.

If I could just conquer the endurance exercises a little bit more.

Never ever though I would see Doug(me) jump on an eliptical machine for 30m or a stairmaster(stairclimber) for maybe 15-20 min.

Yes, when I had my 1st PFT early 2018 Sydney did push me, encourage me, test my endurance... but at that time I was not taking Lupron Depot injections, Abiraterone, and Prednisione. 2nd PFT did kind of the same giving me the workout routine I'm doing now. By the way 2nd PFT Sue was also a Cancer survivor(breast) so fit in well with my life beginning my 2nd round of ADT treatments, Sept 2019 with Abi added.

London441 profile image
London441 in reply todepotdoug

Good. Do you use a heart rate monitor? If not it’s highly recommended. It’s your best ally for building that endurance.

depotdoug profile image
depotdoug in reply toLondon441

Yes two. Apple watch S4 on my left wrist. Accurate abd easy to read. Plus i’ve got high HR limit set so i dont go or try not to go over my ICD/pacemaker HR high trip limit of 164BPM.And I have a FITBIT IONIC on my left ankle for HR as well.

Yes i have an ICD/pacemaker my 2nd implant device since 01/17/2019.

1st ICD/pacemaker was stuck in my upper left chest May 17,2011. 5 days post SCA.

London441 profile image
London441 in reply todepotdoug

You are likely to go past 164? I’m going to have to get me a pacemaker.

depotdoug profile image
depotdoug in reply to

Forgot. What is the standard dose of ORGYVOX per day or month??

in reply todepotdoug

Dosage I do not know...you could pm georgeglass. He has heart issues and I do believe he switch several months ago. It may be covered in you case due to cardiac related SEs from Lupron.

depotdoug profile image
depotdoug in reply to

I did check my Humana pharmacy drug list. Yes, they have it a a Tier 5, prior approval required. Ok I understand that. Dose listed is 120mg 20 tabs per day. Cost is high, very high. But it would not hurt to call my Humana pharmacy expert rep.

jbskiatook profile image
jbskiatook

I was on intermediant Lupron for 10 years, but now have become castrate resistant. 10 years ago I was told intermittent was good since it would postpone castrate resistant and that the rate of doubling of the PSA score was important for determing length of vacation. If you Google PSA doubling you will find some important information to know for your own peace of mind. If they can not see your cancer with an Axumin scan or the latest Galium scan that is very good to know also for you and your doctor.

depotdoug profile image
depotdoug in reply tojbskiatook

Thxs jbskiatook,I will checkout PSA doubling info after lunch.

Plus why not ask for another 68GA - PSMA-11 PET Scan.

I had my 1st one Aug 1st 2019 as a baseline within a Clinical Trial at IU School of Medicine Neuroscience building. Yes they did that CT//PT scan because my PSA was high, also because I was a failed re-occurrence from Radiation treatments way back in fall/winter of 2005.

Plus failed ADT Lupron/Casodex treatments after 2013.

jbskiatook profile image
jbskiatook in reply todepotdoug

I'm guessing 68Ga is the Gallium 68 scan which is top of the line to my knowledge. Great

depotdoug profile image
depotdoug in reply tojbskiatook

Yes it is. As far as PET scans with nuclear 68Gallium radionucleotode is concerned. Problem is youve got to have PSA lab results of 2.0 to 3.0 to make that PET scan effective.

SeosamhM profile image
SeosamhM

Thanks for the post, Doug! It couldn't be more relevant to my current situation and decision points. - Joe

Good luck Doug , whatever path you choose . 👍

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