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adt prior to radiation treatment

FredNick profile image
13 Replies

The urologist wants to use Lupron prior to radiation treatment and I am wondering if I should insist on Orgovyx instead. Are there studies I can go into my appointment with to support?

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FredNick
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13 Replies
Tall_Allen profile image
Tall_Allen

Low testosterone is the desired result either way.

FredNick profile image
FredNick in reply toTall_Allen

I agree, but Orgovyx wasn’t even an option according to my Kaiser Urologist. Funny thing is that they do have a drug use criteria and if I have “demonstrated failure” on the use of Lupron, then Orgovyx could be considered. How do you “fail” while using Lupron? I have no doubt that it will do what it is supposed to do, but what the criteria doesn’t address is the potential negative effects of the drug overtime. I realize this is probably more of a cost issue, but the criteria seems unrealistic given the circumstances and the fact that you can’t determine long-term effects until later.

Tall_Allen profile image
Tall_Allen in reply toFredNick

I know one man who had an allergic reaction to the carrier in Lupron. If your concern is the "potential negative effects of the drug over time" and "long-term effects" you need not be concerned. You will only be using Lupron for 6 months, not long term.

FredNick profile image
FredNick in reply toTall_Allen

That’s kind of what I figured. I appreciate your response and knowledge base on all of this. I’m getting my beads placed next week. Fingers crossed, but I know this is a long road ahead.

FredNick profile image
FredNick in reply toTall_Allen

Not clear on your journey here, but as I mentioned, I had decided on Rad/hormone therapy. I live in Sacramento, but also know enough physicians in the area and outside California to do some homework. I’ve worked for Kaiser in a hospital setting as a PT for 26 yrs. My best friend in college is a Kaiser physician (Pediatrician) in Redwood City. He reached out to his Urology partners there and the Chief Urologist literally demanded to speak to me. This surgeon finished his last case at 7pm last night and contacted me at 7:10pm. He spent the next hour discussing both options with my wife and myself and why at my age, health and numbers, surgery would be the better long-term option. This guy has no skin in the game but felt obligated to take the time to discuss everything. I’ve never met a physician with that type of bedside manner. Obviously both options have similar outcomes with unique side effects but now I find myself at least entertaining the idea of surgery mostly because of the way this man felt about my situation and treated me over the phone. I know many of the responses on this forum discuss many alternatives, but what is your personal opinion? Based on my situation nerve sparing is not an option and of course incontinence is a possibility, but so is death or a long journey of looking over my shoulder or having to deal with other options downstream. Such a hard decision to make given the uniqueness of everyone’s situation. This forum feels like a review where everyone has a different opinion and they are either really satisfied or they really aren’t which is very similar to reviews on a pair of expensive headphones. Sorry for the ramble, but the struggle is real. Obviously you are not supporting my decision either way, but do you have any thoughts on any of this given your personal experience or research? I suspect the answer is make a decision and don’t look back, but thanks for listening.

Tall_Allen profile image
Tall_Allen in reply toFredNick

To a hammer, everything looks like a nail. Not surprising that the urologist recommends surgery. If he didn't, it would be surprising.

See my recent response at the link below (obviously AS is not an option for you with your high PSA):

healthunlocked.com/prostate...

When I was exploring treatment options at age 57, I was single and maintaining erectile function was very important to me, so I chose SBRT. If I'd had a partner who didn't care about ever having sex again, I might have felt differently.

Bilz99 profile image
Bilz99

Lupron and orgovyx will both meet the objective. Orgovyx takes effect quickly and if you plan to get off ADT your testosterone recovers much faster. I was on orgovyx because my plan was to use the therapy intermittently. It is a great option for recovering your T and studies suggest it’s better for potential heart issues

I am now on ADT indefinitely so I went back to lupron for convenience of 2 shots per yr vs a pill every day. Side effects were no different for me. You can’t miss pills.

Godfather2 profile image
Godfather2

My doctor was going to use Lupron injections, but I asked him to look at a study that showed Orgovyx to be more effective with fewer side effects. His only concern was that Orgovyx wasn’t covered by some insurance plans. He checked and it was covered by my plan. I’ve been using it for 4 months No side effects with the exception of fatigue. Check it out!

Norsksol profile image
Norsksol

Fred: I was put on Lupron prior to raition treatment and it did its job. I have no experience with alternatives. Had the Lupron and it did all the expected things: muscle weakness, fatigue , lack of stamina, and loss of desire and functions of genitalia. I also am on eliquis, so couldn't get surgery. Results of treatment (completed a year ago) are good, but I hated teh lupron effects. I am 75 years old. but I am stable and grateful. I have a good radiaologist.

good radiologist.

cnjaz profile image
cnjaz

Hi

I am currently on Orgovyx. I am on week 7 and will be on it for 6 months. I have fatigue, no libido, however it is very bearable so far. Have had a couple of hot flashes so far nothing bad. My doctor is also put me on 5 mg of Cialis or Tadifil to keep blood flow to my penis. I have no libido but I do make sure I give myself an erection a few times a day. Also, as everyone has said it does get out of your system quicker. With 6 months of Lupron it takes 6 months to get out your system. I do lift weights 5 days a week and do at least a half hour of cardio every day to maintain muscle mass and keep off the weight. Plus I eat a very health low glycemic diet. So far so good but I know everyone reacts differently to this stuff. However, as I have seen on these posts diet and exercise make a big difference. Have lost an additional couple of pounds which is very hard on this stuff. Plus this stuff messes with your blood sugar, cholesterol and iron in your blood. After one month my PSA dropped from 7.03 to 2.95 and Testosterone has dropped from 453 to 85. Needs to be below 50 for castration so I am almost there.

janebob99 profile image
janebob99

When you eventually stop taking Orgovyx, your testosterone will recover much faster than if you had taken Lupron. T-recovery after Lupron can be quite long.

Testosterone recovery after stopping Lupron
NanoMRI profile image
NanoMRI

Sharing differently. Both radiation and surgery are a bit of a blind shot, impossible to know if all the cancer is in the treatment field. My RP and my salvage RT missed. Today, I would be insisting on genomic testing, PSMA imaging and liquid blood biopsy (not seeing these in bio) before a treatment decision.

Also differently, I declined ADT with my salvage RT - that was over seven years ago. My decision was based on my otherwise very healthy, fit and active 58 year old lifestyle and there is no equivocal proof ADT is life-long curative. If/when needed, ADT remains in my quiver and IMO thereby risk for CR is further off. All the best!

Oldprogrammer profile image
Oldprogrammer

The following web site may provide some of the information you are looking for:

facingourrisk.org/XRAY/horm...

To summarize, it states that Orgovyx is more effective than Lupron in achieving castrate testosterone levels, and it has less heart risk than Lupron, which I think oncologists are not properly considering. I insisted on being prescribed Orgovyx due to it's smaller heart risks. I achieved a testosterone level less than 3 after only one month on Orgovyx. It is more expensive than Lupron, but the company has patient assistance programs one may qualify for. Your doctor's office should be able to forward the application forms to you.

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