Another stop ADT question.

[7OaksTom]

My profile is up to date. I am coming up on the 18 months of ADT for my Gleason 9 OMCRPC. Treatments : 18 months ADT + 10 months Xtandi+ successful IMRT to pelvis for tumor and lymph nodes and successful SBRT to rib met. Last PSMA PET showed possible nodes . I now have 9 months of undetectable PSA (due to Xtand). I am tired of the hot flashes and fatigue. I am meeting with my VA MO next week and my Kaiser MO a couple of weeks later. Can I make the case for a vacation from at least the Eligard? Would that make a differnce in SEs?

[PCaWarrior]

Maybe. Either one is going to give you fatigue. Xtandi perhaps more than ADT. ADT is going to give you hot flashes though.

Perhaps try to switch to Nubeqa? Easier to handle for most of us. For me it was night and day.

And perhaps talk to your MO about adding a low dose E2 patch?

[Stevecavill]

I would definitely ask about taking a break. Stopping the eligard and increasing T should improve your SEs. But T recovery can be very slow

The key on a beak is to check psa frequently so you can act quickly when/if it starts to rise again. I’ve been doing intermittent ADT for 12 years

[petabyte]

Hi Tom

On a different topic entirely. Have you ever had a DEXA scan? One of the hidden adverse effects of ADT is bone loss and osteopenia/osteoporosis.

I ask because I see you broke 7 ribs on falling (i just broke my wrist in a fall and think osteopenia probably contributed).

If you do have osteopenia, E2 patches as suggested by   PCaWarrior should also improve bone health (I will discuss this with my MO next month)

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

May you wrist in peace (and all in one)....

Good Luck, Good Health and Good Humor.

j-o-h-n

[leo2634]

I've been on Eligard six months injections and Zytiga Prednisone since 2018 with no vacation while my life style has definitely changed I've really adjusted myself to the new me. Ask your MO to possiblely look into those for you. I get side effects but they are few and tolerable. Never give up never surrender Leo

[SteveTheJ]

Consider your choice carefully and do not fail to get regular PSA and testosterone tests.

I started ADT (Erleada and Lupron) in April 2020. After 2 consecutive years of no tumors on scans, I started a temporary break from Lupron July 2023. By January 2024 my testosterone was still 4 and PSA unmeasurable.

In 2023 I had another good set of scans and by probably mid-2024 my testosterone was coming up. My most recent testosterone was 200 and PSA was 0.11 so I'm having both tested again in June.

As to symptoms, I definitely feel better although every single day the fatigue and brain fog hit around mid-afternoon, usually ease up in the evening. Never had hot flashes.

Your side effects won't go away but you'll feel better. I'm prepared to go back on Lupron to preserve the best QOL overall and best chance of survival.

[London441]

You don’t need to ‘make a case’ for a vacation, it’s your decision. The doctor is free to agree or disagree, but no one knows what will happen, including him.

It’s basically (supposedly) letting the disease proliferate vs keeping it off balance and getting some relief. There would be no consensus on your specific case at this point if hypothetically presented to 100 different MO’s.

What to take away (Eligard or Xtandi), what to sub out with (eg:, Orgovyx, abiraterone, Nubeqa etc), and when to resume is PSA rises all decisions you hopefully make together, but at the end of the day you are still driving the bus.

I’m sorry about your fall but agree it’s crucial to get a DEXA scan if you haven’t had one for a year or more. You may even get push back on that, but definitely get one. It’s not expensive if any coverage issues.

It’s especially important to know your bone density going forward because the best solution for your side effects isn’t the vacation or switching drugs, it’s the exercise. It’s more important now that it’s ever been. Whatever relief you get from a vacation is going to be uncertain both in degree and time of onset, and depending on it to restore you on its own is not a good plan.

This is what a doc will definitely not tell you, but forget about that.

Find out what you can return to safely and start working out again if at all possible. Broken ribs are a tough one but they do heal. If you can get back to lifting in particular, get a trainer and up the ante. You may be quite pleasantly surprised.

Remember, exercise is the one thing in your control. As for the drugs, agree that the Xtandi may be the main side effects culprit, but either Induces them. Just taking away the Eligard as an attempt to restore your energy via return of testosterone is on the far side of optimistic. Removing/replacing the Xtandi probably a better bet .

Augmenting whatever path you choose with increased exercise increases your odds dramatically.

[Mgtd in reply to London441]

Great response!

[westobutch123]

Been on Drug holiday for over 15 months. Just had labs/PSA/T level checked last week, along with oncology visit office Friday. I'm enrolled in A-Dream clinical trial, just being studied but no magic drugs. Until recently my T stayed low (<3) and my PSA 0.01. Since Jan, T now risen to 54 (still low rel to normal) and my PSA went from 0.14 (Feb 27th) to now 0.43. No panic yet, but healthy concern. I still have my prostate which might influence my PSA rising. We will do another PSA in 4 weeks, and my 6 mos CT/bone scan and labs (part of clinical trial) in June. My onc office does not feel a PSMA scan right this minute will provide useful info and are comfortable (for now) with June scans coming up. What has been emphasized in these posts...you can be the captain of your own ship (decision wise) and sometimes it can be more "art" than "science" when deciding which meds and when to use. I just want to always feel I am on the front line of decision-making working along with my care team. Take care one and all.

[j-o-h-n]

I know less than nuttin.....but if you ask me, and you didn't..... I'd say go the course (all 19 holes)...Take care............

Good Luck, Good Health and Good Humor.

j-o-h-n

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

In my experience the 19 th is always better then the first 18 so start there and skip the rest.