Another Vacation Question

[Ron53]

Everyone, I have been following in the background for the past 6 months and have learned so much. Thanks to all who respond with their thoughts etc. While I have saw this question posted previously, the situations have been a little different than mine, I wanted to see what everyone thought about my situation. You can view my profile to get my details, so I won't bore you by repeating all of that, however briefly had PSA of 6.2, Biopsy GL9, prostrate surgery in April 2018. First visit back PSA 2.2. Scans clear except for some indications of cancer cells in pelvis and near by lymph nodes. Doctor said cancer cells too few and dispersed to do radiation. Started Lupron August 2018...PSA dropped to 0.87 in September 18, 0.53 in November 18, 0.33 in January 19. In January doctor recommended adding Zytiga, I did and PSA was 0.000 in April 2019. I ask Doctor could I take a vacation from medications, he said, if your PSA is undetectable in August, that we would "discuss it".

1. What are your thoughts on a vacation...either from one or both?

2. Can I remain on Zytiga w/o Lupron? Medicare go for that? Lupron seems to be the one that sucks the life out of me in more ways than one. Other than weight gain, Zytiga didn't do much more harm.

3. If I did take a vacation from one or both, what would be the marker to restart everything? PSA 0.5 or 1.0 etc?

All questions I can surely talk to Doctor about, but thought I would get some opinions. I would really like to get some improved QoL, even if only temporary. Have great relationship with Doctor, however, he focuses on cancer and not QoL except for giving me another pill to take when I complain about something.

Thanks for your input.

[tango65]

Do you have a Radiation Oncologist? I would discuss with a RO the possibility of doing whole pelvis radiation including prostate fossa and lymph nodes up to the aorta bifurcation, Your treatment if correct for hormone sensitive metastatic cancer, but your profile said that you were classified as N0M0. Urologists and medical oncologists are not really qualify to decide about radiation treatments.

[Ron53 in reply to tango65]

I have a UR who teams with an Oncologist. But not a RO that I am aware of. Will bring it up at next weeks appointment. Thank You

[Break60 in reply to Ron53]

I agree that you’re a candidate for whole pelvic radiation. The statement that mets “are too few and dispersed “ is inappropriate. A good RO knows how to spread out the radiation to get at the entire pelvic region to stop those from spreading which they eventually would if left untreated. As far as Intermittent ADT , TA is correct: there is no formula cast in concrete. In my case I simply stayed on adt for 13 months then waited til Psa increased to around 2.0which is the optimal point where the new ct pet scans can locate mets then I hit the mets with sbrt and went back on adt. My vacations were short due to fast Psa doubling time.

As a result of short vacations and hating Lupron or its ilk I switched to estradiol patches .

[tango65 in reply to Ron53]

Best of luck on this journey,

[Tall_Allen]

1. The Hussain study on intermittent ADT suggests that continuous ADT may be preferable when metastatic burden is low. But that was before we had Zytiga. So very much a judgment call.

2. A very small recent study suggested that Zytiga may be equivalent to Lupron+Zytiga, but that was among men who were already castration resistant

urotoday.com/conference-hig...

3. There is no fixed protocol for iADT. Some use a PSA benchmark, some use PSADT, some use new/enlarged mets, some use a time, some use testosterone recovery.

[Ron53 in reply to Tall_Allen]

Thank You for the response, If its a judgement call, at this point I am thinking to go off just the Lupron and stay on the Zytiga for 3 months or until PSA rises to something, not sure what. Will include that in the discussion with the Doctor.

[Greatfaith in reply to Ron53]

I’m thinking the same thing. I finish chemo on sept 5th & had my second 3 month Lupron injection last week. Lupron is horrible but I’ve been told it keeps you alive, not really living but existing. I’m hoping my psa will go lower than 0.177. Hang in there!

[grahaminator63]

Thank you Ron for the questions because I have been on Lupron/Zytiga for the past 2 years (this coming November). My PSA is undetectable. I am planning to go off the Zytiga in November depending on what my CT & Bone scans return. So far, they have been clear of cancer.

My wife asked me, why do you need to wait until November, why not stop now? I have an appt. with my oncologist Aug. 16 and plan to tell him that I would like to stop with the Zytiga at that time instead of wait for November. I don't think it makes much difference.

My question as a follow up to Ron53's is, what would the difference be stopping either Zytiga or Lupron? Your thoughts?

[MichaelDD in reply to grahaminator63]

Ron did you go off of Zytiga last Friday?

[Ron53 in reply to MichaelDD]

PSA was still 0.000, so really wanted to dump it all. I was due another 6 month Lupron shot on that day as well. Told Doctor that I would like to stop all medications, He convinced me to stay with the Zytiga and not take the Lupron. I also reduced Prednisone to 5G. Its only been a week today, so can't tell too much, but the hot flashes had already began to reduce in qty toward the end of the 6 month (but not in strength, maybe even stronger?). I'll let you know as the Lupron starts to fade away. Not sure how long it will take.

[MMMayhem]

Another factor here is what is the cause of your QoL issues? If it's side effects (which I know is likely the lion's share) them stopping the meds will improve it. However if it's low T, it takes time for the body to recover. I did 9 months of ADT with Lupron and zytiga with 40 radiation treatments from Sep to early Nov. My last 3-month Lupron was Jan of 19 and i stopped Zytiga at the beginning of April. After almost 4 months off everything, I just got my first labs done last week and thankfully my PSA is still undetectable, but my testosterone had only recovered to 75 so far. Anyway, just some extra data to add into the equation if you think it will help.

Lastly, the weight gain is actually most likely due to whatever steroid they have you on with the zytiga, another variation to consider.

[Ron53 in reply to MMMayhem]

I really hate to complain too much as I read of guys here who are struggling with much more serious issues. But you are right I suppose...there are the hot flashes of course, but they are mostly an annoyance, the brain fog which is tolerable, the difficulty staying asleep are all things I won't complain so much and I work hard on keeping the weight off, so not too big a deal. But the low T, you know, when you can't decide which is prettier, your wife or your new pickup...then you know somethings wrong and its the low T. I just want that old feeling back for a few months if nothing else and I hope coming off the Lupron and keeping the Zytiga would allow it to return for some period for time,

[MMMayhem in reply to Ron53]

I'd definitely discuss those goals with your Dr. My understanding is the Lupron eliminates the testosterone from your testicles and zytiga eliminates what your adrenals create. Whatever you end up deciding, I wish you luck.

[j-o-h-n in reply to Ron53]

That depends.... How many miles on the pickup and how many miles on the wife?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/01/2019 4:50 PM DST

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

Both virgins

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

I'll take the truck....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/01/2019 5:13 PM DST

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

Hahaha....

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

I'm guessing that would be your choice too...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/01/2019 5:48 PM DST

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

I like your sense of humor! Thanks

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

And I appreciate your comment....... Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/02/2019 5:55 PM DST

[Hidden in reply to Ron53]

Go for it .... I’ve had 3 “T” for over four years now . Chopped my balls 9-16 but still on test adt drug Tak-700. I am scared to take an adt break fearing the dreaded return of the beast.. plus I would need to inject “T” because I shut down the factory ... My docs say keep doing what I’m doing . Nobody is telling me to take a break . Hope if you do it ,that it’s all positive for you . I will follow your progress if you report back please . Good luck !

[Greatfaith in reply to Ron53]

You took the words and thoughts right from my chemo/Lupron brain. I know exactly what you’re going through. So frustrating.

[Hidden]

Ron - I know just what you mean. Oh to be a MAN again! Even for a short while! I can understand why some prostate cancer victims prefer to "go out like a man" when the time comes. Fortunately, Lupron cannot kill love or an appreciation of beauty.

Logically, the major part of the Testosterone production is from the testes, and Lupron suppresses that. The Zytiga suppresses the rest - a far smaller amount. So if you stop the Lupron, the Zytiga is not going to do much as the cancer cells will get plenty (after several months) to make trouble. It makes more sense to stop the Zytiga which will also give your body a rest from the cortisone that goes with it. It's not good for you and unbalanced.

With such good numbers, what makes even more sense is to stop everything and see if your immune system can take over. This may be your one chance to get "free" - but you would have to work hard and be diligent that this is working. Read up what some have done to "escape" - raw food diets, Vit C via IV, lifestyle. If that starts to lose ground, and from what I now know, I would go for a very low dose Xtandi/Vit C combo to keep that PSA down, and that may last for years (nobody knows how long - it has never been tested - but 20 months for me so far with Lupron). This has just about zero effect on the body and the immune system so at least does almost no harm. Once you bring in larger does of Xtandi and/or Lupron, the immune system is compromised and side effects kick in.

There is a legal problem here - some bright sparks decided that Xtandi was a "post Chemo only" medication sold only by the box, so to use it as the very first medication for treating prostate cancer using "not in the book" low doses (a box can last a year) requires an "under the radar" approach. Xtandi does not act as an effective testosterone blocker at such low levels, but somehow weakens the cancer cells and makes them much more vulnerable to being killed by Vit C via IV. Once the cancer is growing at more than about 1.5% a day, the Vit C on its own will not easily keep it under control.

[tallguy2]

Please keep us posted on this journey. I may have a similar decision to

Make a year or two down the road. Thank you for posting!

[abmicro]

Took a break for a year in 2012 after my super sensitive PSA was undetectable for 2 months. I thought I was cured, but Oncology knew better. A year later, PSA started creeping back again. Went back on meds. That year of freedom felt good. I worked out at the gym, I traveled. I danced, I got married. Good things happened that year.

[Ron53 in reply to abmicro]

Thanks, I'm thinking the same thing! , it might be the worst decision of what's left of my life, but going to give it a shot.

[Greatfaith in reply to abmicro]

Happy to hear you enjoyed your break! I wish you the best.

[Greatfaith in reply to abmicro]

Also wondering, did you change your diet while on the break, eating vegetarian by chance?

[abmicro in reply to Greatfaith]

no but I avoided pork.