Last lupron

[Howard53545]

On Jan 14, had the last of 2 years of three months of lupron. It was a grind. I gained weight and was miserable. Fortunately my PSA reminded undetectable during this time. A PSMA scan showed two lymph nodes so we radiated the entire pelvic area. So my next testosterone and PSA check is scheduled on July 14. Is this too long? When will lupron clear and testosterone return. Is the PC just taking a nap and learning how to make its own testosterone.

[Rich_Rad]

Hi Howard!

Congrats on the two plus years… I know of what you speak regarding side effects of ADT!

I have been on the Lupron/Zytiga combo. I had my last shot of Lupron in September (4 month dose), and my last dose of Zytiga will be on Monday night. I too have an undetectable PSA throughout the course of treatment. I get my PSA done every two months, and I believe my medical oncologist will move that to monthly (when I meet with him Tuesday).

There is an anxiety about what will happen off the meds… even though the negative impacts have been great, it has been working…

Stay close! It’s nice to connect with someone going through the similar stage of treatment!

Rich

[Magnus1964]

July is long wait for your next PSA. I would ask for a test in March or April.

[Tall_Allen]

After 2 years of Lupron, it will probably take at least 6 months (highly age dependent) for the testicles to wake up.

[DJBUNK]

I am also finishing 2 years of ADT treatments. This week, I will receive my last quarterly ADT injection (Eligard). I also had lymph node involvement -- 1 node revealed during surgery. I had pelvic region radiation 8 months after surgery. During my visit to my MO last week, I was told that I will be tested every 3 months, at least until my T returns to a 'normal' level. If PSA remains undetectable for some extended period, PSA checks might move to a 6 month interval.

I suspect that your doctor is assuming there will be no change in your PSA or T levels 3 months after the injection, which may be true, but I feel more assured with 3 month testing rather than 6 months. Since I'll see my doctor at 3 months anyway, it's no big deal to have blood drawn too. And I definitely want testing every 3 months once my T begins to rise.

[timotur]

I did monthly Lupron shots for 18 months, and T came back to a normal range within five months after the last shot. I do PSA checks every three months.

[Hidden in reply to timotur]

I’m going to say that is better than most. Quite a bit better. I have no data but that seems very good

[timotur in reply to Hidden]

I think good diet and lots of exercise may have helped. Before treatment, T was very high, about 1100, and came back to 700, hope it stays there in the middle of the normal range.

[E2-Guy]

Nal,

You seem to be quite opposed to high E2 levels when I believe that my tE2 gel regimen is keeping me from 'bitting the dust'. After making the mistake of having the numerous 68Ga-PSMA PET/CT identified sacral lymph nodes removed my PSA dropped for about six months. After it began to rise I started applying the gel which has been keeping my PSA at undetectable levels for well over three years.

[Muffin2019]

The weight gain does suck.

[NOCanceros]

HelloYes its a long time ,do it under february month this year ,its better to check it early,iam doing my psa every month and it cost 25 usdollars in sweden.The urology and the oncology they do not care because we are numbers not human.Take care.

[tennis8285]

I had my last lupron shot in early December of last year (2021). However, I will be on keytruda for probably another four months to finish two years on each drug. My psa has been undetectable for the last 18 months. I am looking forward to eventually having my red blood cell count increase and growing a few hairs on my body (maybe not so important on the hair). I plan to follow London441's advice and keep working out, weights and aerobic. If nothing else, it keeps me sane. Good luck to you and the rest of us on ADT vacations.

[nextphase]

Good for you Howard. I’m just starting this lupron journey. I’ve been on lupron for one year now and it looks like I will be on it for a while. I’ve had the hot flashes muscle loss. Outside of that I feel good and work out all the time. Just wondering where your PSA is at and how long you have been with P.C. ? I’m 14 years out since operation PSA came back I was in a study at UW for 1 year. Anyway my PSA is at 0.03 now and they want to keep me on this. Thank you.

[Howard53545 in reply to nextphase]

My PSA has been undetectable after radiation of pelvic lymph nodes and 2 years of lupron.

[nextphase in reply to Howard53545]

Thanks Howard. Hope you can stay off lupron .

[E2-Guy]

Thank you Nal for the detailed reply and "bible" recommendation. I'm almost afraid to read it for it may frighten me to an 'early' death. If I discontinue the tE2 I don't know what I will do? The all too common side effects and the cost of Lupron are of major concern to me. Private heath insurance is an impossibility and Medicare pays for nothing outside of The States.

Confused - Cheers,

Ron

[MateoBeach]

Yes. Good for you for completing over 2 years of ADT as a short term adjunct to RT. Now is time to stop and let T recover. Only then will you know if you are cured. This is not the same as a vacation for those who are on lifetime ADT which we hope you will avoid. Good luck

[E2-Guy]

Thanks much Nal! My grandfather, father and his two brothers all did very well on DES until it was discontinued and replaced with Lupron in 1985. When I became a candidate for ADT~ four years ago my 'advanced' and highly respected urologist Robert Flanigan at Loyola in Maywood, IL suggested that I try DES along with an 80 mg aspirin. I was going to start taking it; however, Richard Wassersug persuaded me to try Oestrogel since it is readily available here OTC. I thank God every day that he has allowed me/us to still be kicking in spite of having this nasty disease. Hopefully we'll both make it to 79... my b'day is in three months.

[Scout4answers]

I have Friedmans book and he is essentially advocating high doses of Testosterone as I understand it, yet you said you are saving BAT for later and are now doing IADT. I am a bit confused

[Scout4answers]

I am meeting with Dr. Szmulewitz at U of Chicago, who was one of the co authors on the BAT study with Gatenby, on the 28th and want to be as up to speed as I can be regarding BAT and Adaptive Theory so I can ask intelligent questions.

I know enough to know that this is a direction that makes some sense to me.

One of my questions is: once one gets to undetectable PSA, what further benefit does one derive from ADT + Zytiga . Is this the time to start IADT or BAT?

[tallguy2]

Once metastatic, most men are going to be doing ADT for life. Like me. Good luck with your Lupron holiday.

[Hidden]

Great job getting through it Howard! I did the same . But then I chopped the boys and dropped the lupron . That was 4 yrs ago . Keep rolling ! 😎✌️

[garyjp9]

Congratulations, Howard. But---if your PSA was undetectable, how did you manage to get a PSMA test approved, and then have it actually show something? I had understood that the PSA level had to be around 0.2 for anything to show up on a PSMA scan?

[Howard53545 in reply to garyjp9]

My PSA was 1.41 then I had the scan.