I have a question to those of us using Lupron

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.

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

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.

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.

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.

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.

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.

Just wondering if you took any nutritional supplements to help with fatigue?
Thank You
Dan

My brother gets Lupron injections. I don't know the dosage but I do know he gets them every 3 months. He has never complained of pain in his arms or legs. He has back pain that was present prior to prostate cancer and his back pain has not changed. He walks multiple times a day for an average of 6-7 miles. He is prescribed other medications and he feels his muscle tone has decreased since starting these medications.

I am very aware of all you said. Have been for a long time. Since I have just completed my 5th.round of treatment with 4 failures behind me I have become quite knowledgeable of the basic treatments and drugs involved. I think you have missed my point. The drugs you are on will not cure you,they will only neutralize the cancer for the time being and that comes with side effects. And yes there is chemotherapy available they just use it later as a last resort when the other drugs such as you are on quit working. By then the body is so run down from the years of ADT that no wonder the chemotherapy doesn’t work well. They don’t do that for breast cancer do they? They hit it harder earlier. Why not do that with prostate cancer for the higher grade disease with early reoccurrence. This was discussed by some doctors including doctor Kwon from Mayo during the PCI summit.