Eligard failure?

[LongevityAT]

Bear with me as I list the details behind my questions. I am currently receiving radiation treatment at UCLA under Dr Kishan on the Viewray (20 treatments vs 5 due to Prostox DNA test showing high risk to long term SE's from higher dose of radiation) and only have 2 treatments to go.

Prior to coming to UCLA from Georgia, I had a 3 month (22.5mg) Eligard injection at my Urologist office. A couple of weeks later, I noticed on my patient portal it said I did in fact receive 22.5mg but on the billing paperwork it said I received the one month, 7.5mg, injection. I spoke to the Dr's office and was told they only order the 22.5mg dose and that the billing would say "7.5mg x 3" and that I received the correct 22.5mg dose. Except, the bill I received said 7.5mg x 1 (however, Aetna received a bill from the Urologist that billed for 3 - 7.5mg injections).

Fast forward to today. With only 2 treatments remaining, I asked Dr Kishan if we could check my PSA and Testosterone levels now vs waiting 3 months. In the back of my head I was still concerned I didn't receive the correct Eligard dose. The results were back this afternoon and my Testosterone, 7 weeks after the injection, is at 446.

Now, my questions. Is it possible to have a 3 month injection of Eligard and 7 weeks later have a normal level of Testosterone? I assume it is possible the Eligard was administered incorrectly. Could that cause this result? If this level of testosterone is outside the bounds of what could be reasonably expected, what are my alternatives or options?

I've sent a message to my Urologist asking for their thoughts for plan moving forward. I'm also asking UCLA to request insurance approval for a Lupron injection while I'm still here if that turns out to be the best option. Lots of moving parts here and I'm interested in thoughts on how best to proceed.

[tango65]

I would request firmagon or relugolix, to have the testosterone a castration levels by days 2 to 4 instead of taking 2 to 4 weeks with lupron or similar. Then you will have time to arrange your situation with your urologist.

You should consider to consult with a MO to manage your cancer instead of continuing with an urologist since you decided not to have surgery.

[LongevityAT in reply to tango65]

Thanks for the reply. Like the idea of Firmagon while figuring out what happened with Eligard. From what I can find, it is highly unusual for Eligard to not work in lowering T. The one study I saw it was successful in 115 of 116 men. Of course, I could be that one man.

The Urologist in GA is simply handling blood work and injections as requested by Dr Kishan. Kishan at UCLA is managing my treatment plan.

[HikerWife in reply to LongevityAT]

It sounds like Dr. Kishan might be a radiation oncologist? If so, please consider consult with a medical oncologist to manage your case & meds.

[j-o-h-n in reply to tango65]

You're a cool guy helping members......... but that doesn't mean I want to dance with you....

j-o-h-n <===<<< Senior management is about to spike my spikes....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/05/2023 1:54 PM DST

[Tall_Allen]

Get a Firmagon injection now to get an immediate effect. Even if the Eligard was the right dose, it clearly didn't work.

[Concerned-wife]

So good you looked inthe portal! Do they routinely do the Prostox  test before hypofractionated radiation at UCLA?

[LongevityAT in reply to Concerned-wife]

I assume they do since Kishan was part of its development. For me, I just happened to find it when searching through clinical trials early in my research after diagnosis. Seemed like something everyone would want to know, but other than UCLA, other doctors are not aware nor willing to put much stock in it until they know more. I've run into one other patient being treated at the same time as I am who was at high risk as well. Don't think it is common but if you are, it is best to know and adjust treatment selection accordingly.

[MiaAmia]

My partner did not respond to Eligard (leuprolide acetate) but had immediate response from Firmagon (degarelix) and has remained on it. For some, the monthly injection is an inconvenience; for us, it is reassuring that he sees the MO every month. As an aside, based on comments I've read here and elsewhere, the mood SEs of Firmagon seem to be far less extreme than for Lupron or Eligard (my observation - not science).

[lowT163 in reply to MiaAmia]

nobody in their right mind would get that shot once a month. I’d say it didn’t work.

[MiaAmia in reply to lowT163]

Pretty rude response. The monthly firmagon shot has been working well for him. It's a reasonable option.

[lowT163 in reply to MiaAmia]

what’s rude about a painful shot. Haven’t heard anyone saying it works better if you get it every month instead of every three. Fact is it hurts.

[MiaAmia in reply to lowT163]

Unlike Eligard, Firmagon must be administered monthly. It's not a choice to have it monthly; it's the way it works. My partner had a choice to take a shot every three months that did not work or to take one monthly that does. He does not find the shot terribly painful. It is given subcutaneously in the abdomen. I would say that a monthly firmagon shot that works is much better than an eligard shot every three months that doesn't is a pretty straightforward choice. I think you misunderstood. We're talking two different drugs here. That's the issue. Whatever works is what matters.

[LongevityAT in reply to MiaAmia]

I agree MiaAmia. Eligard did not work for me as well. Not sure if it was the drug itself or if it was expired, not stored correctly or administered wrong. Eligard is reaching out to my Urologist in GA to get lot number and begin the process to find out why it didn't work. Unfortunately, at this point, even if I had confidence in Eligard, it is too late to try it again as I have a short time frame to get my T down (2 weeks) and Firmagon has an almost immediate effect.

As I've told all my doctors, I can deal with any short term side effects of treatment for this disease. I'm only concerned with the long term, whether it is preventing the spread of the cancer or avoiding long term SEs.

[lowT163 in reply to MiaAmia]

have to agree with that. Still hate the shot. Hope it works. I went back and forth with lupron and eliguard mixed as my home doc used eliguard and md Anderson used lupron. Both hurt. Not looking forward to starting again.

[LongevityAT in reply to lowT163]

as they say when hiking the Appalachian Trail, "embrace the suck", because the reward is worth it!