I have a question to those of us using Lupron

Dan

Other than the vitamin D for bone, no supplements. For me, when I was exercising I was nit fatigued or it at least felt that way. When I was tired, I either napped if it was during the day I would take a nap and if in the evening I would call it a day and go to bed.

I also tried not to overeat to avoid that stuffed feeling and the tiredness which comes with that.

I did better at staying hydrated too which may have helped.

A good friend of mind was treated for prostate cancer with Lupron and Cyberknife radiation. The radiation was, as he put it, easy and he sailed through it. The Lupron left him so weak that he was nearly unable to walk. I researched Lupron online and found other men who also had significant muscle loss from Lupron. My friend's oncologist acknowledged that 'muscle wasting' is a not-uncommon side effect, as are type 2 diabetes onset and first-time cardiac events. My friend rejected any further Lupron infections and it took about ten months to recover to where he was before the single injection. In his case, the benefit of Lupron was expected to reduce his risk of recurrence by 1 - 2% which he felt made the Lupron side effect not worth it.

A friend of my went the same route with radiation and Lupron treatments. That was 10-years ago. He said his hot flashes were so intense that his glasses fogged up! The good news is, he is still alive but can no longer enjoy a walk with his wife in the park because he is so hobbled up.

Post-Lupron testosterone values are not given for 2018 and 2019, and finally given for 2021, and testosterone is now normal. Presumably they were undetectable, and PSA is very low. I'm only three months into Lupron post radiation and monitoring both.

Is is fair to say, given the dramatic therapy you are receiving, that in retrospect, the diagnostic process suggesting prostate-confined disease leading to surgery remains difficult? My tests suggest confined disease, but I don't know if they know the probability of confined disease.

When I was diagnosed in January 2014, other than PSA and the biopsy, the only imaging available was the MRI and CT which frankly, unless you had high volume disease, would probably not show any lymph node, bone or organ involvement.

Fast forward and today the C11 Choline, PSMA and Aximun scans can detect disease at very low levels.

The challenge is and remains (in my opinion...) twofold:

If the FDA has not authorized the use of those scans for diagnostic purposes in men who are "de novo" then insurance companies are not likely to approve and pay for them.

There are urologists, radiologists and oncologists who tread lightly when it comes to anything other than the standard of care as outlined in NCCN guidelines. I still remember my radiologist's words when I pointed to emerging studies which showed adding short term ADT and including the pelvic lymph nodes to SRT improved outcomes...her answer, we don't have long term data on that...when SET failed, I vowed never again to allow my medical team to deter me from what I wanted to do when I felt the data supports it.

There are clinical trials ongoing looking at using the newer scans in the diagnostic phase of de novo patients. As one night expect, early data points to locating what conventional imaging does not, thus changing the diagnosis and treatment plan.

My testosterone was not very high when Mayo measured it in January 2017, just under 300. Throughout the 18 months of Lupron it was <7. My last Lupron shot was May 17 so by August or September it would have cleared my system. T was 135 in October , 400+ by February 2020 and over a year later was about the same.

The short answer, yes, accurate diagnosis and staging of de novo men is a challenge, it could be easier with the dances in imaging technology and soon genetic testing.

If genetic testing had been done sooner in my treatment, I wouldn't have wasted 8 months taking abiraterone. Docetaxal shows same resistance in studies. Oncologist claims not performed in real time. Insurance companies do not want to cover costs until patient fails. Seems ridiculous imo

I’ve been on Lupron for 6 years. Dose every six months. No breaks. No pain that I can attribute to Lupron. ED yes. Low libido yes. Hot flashes yes.

Scullrower: my experience is the same. I have been on Eligard/Lupron for 3.5 years, a shot every 6 month. Low libido, ED, no significant hot flashes. No pain but some weakness in my legs (or is that just from an accumulation of birthdays?).

I’ve been on Lupron for “only” two months. ED yes, but I’m 72 and have had issues for last couple of years. Low libido yes. Fatigue yes. Pain/weakness in extremeties no. Hot flashes so many I’m trying Venlafaxine.

It’s a good idea to keep exercising. Weight training especially. Without testosterone, muscles can atrophy without challenging them. Squats are a biggie. I’m not a doctor but more and more doctors are adamant about men on ADT exercising and keeping their weight down. Weak muscles could be a source of pain seems to me