Continue on Lupron or try Casodex? - Prostate Cancer N...

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Continue on Lupron or try Casodex?

Stellabell profile image

I was diagnosed with high risk PC and opted for radiation instead of surgery. I started on Lupron 30 days before treatments and have been on it a year or so now, 6 month shots. The side effects are getting worse as time passes. I can live with the 12-15 daily hot flashes but the fatigue, belly fat, and joint pain, especially in the fingers, is becoming really concerning. Daily exercise only seems to help a little bit. Would Casodex be a better option? I am due for Lupron shot #3 in a few weeks.

15 Replies

Casodex does have fewer side effects but if Lupron is still working my advice would be to stay the course.

thanks

1 1/2- 2 years of 150mg Casodex with 10 mg tamoxifen may give similar results, or you can ask your doctor about adding an estrogen patch (+tamoxifen) to Lupron, which may reduce the hot flashes and maintain bone strength and lean body mass.

I can certainly sympathize with you. I'm in the same boat - this December will be 1 year on Lupron (with 45 radiation zaps early on..) And I'm growing to truely hate the Lupron side-effects. Besides the annoying ones - there are other more serious ones. Lupron will throw your lipid balance totally out of wack. My cholesterol doubled, meaning the statins I take had to double, LDL all the numbers go nuts. It's caused anemia - not crippling, but that combines with the fatigue caused by Lupron to make it super tiring to do anything. You know about the obesity problem - I went from comfortable in 36" waist pants to needing 40" waist pants - and I gained almost no weight - all that growth came from muscle depletion and my butt (I had to go to suspenders to hold my pants up.) Cardiac, insulin (diabetes) are all potential issues.

Well - you know the problems - the good news is - there is a growing consensus that 18 months provides all the benefits of longer lupron regimes with a lessening of the seriousness of the side-effects. 36 months used to be considered the optimum - but that was based on a study where half the people got 6 months of ADT, and half got 36 months. The 36-month group did better than the 6-month group, so the standard became 36 months. NOTHING in-between 6 and 36 was studied.

There now have been studies with shorter terms of ADT - and the paper "Androgen Blockade Can Be Shortened by Half in Patients With High-Risk Prostate Cancer Treated With Pelvic Radiation" by Ann Jacobson, MPH, CCMEP, CMPP - found the results were almost identical to men taking 18 months of ADT vs men taking 36 months of ADT. This was reported in the "Highlights from 2013 ASCO-GU" conference. This was a phase III randomized study - so it wasn't cherry-picking.

Another study - concluded recently called the "RADAR Trial" compared 18 months to 6 months of treatment, and the addition of Zoledronic Acid to the treatment. Zoledronic Acid made no difference at all. There was a difference in 10-year results between 18 months and 6 months of ADT - 18 months was the recommended duration based on those results.

So - the good news is - if you decide to continue with Lupron - one more 6 month shot and it should be over for you.

My urologist (who gives me the shot - magic hands - didn't even feel the last one) still is in the 36-month camp but did mention perhaps 24 months. I'm unsure if that is treatment driven or financially driven (he gets paid for each shot - and mine is 3-month shots.)

My medical oncologist (famous NYC MD/researcher) is quite agreeable to 18 months. He feels 12 might not be enough given my G9 status. He's seen some preliminary results on 12 vs 18-month studies. He's also seen all the studies I mentioned.

My radiation oncologist said "We'll talk about it at 1 year, after reviewing how you're doing" - that is in December. I'm going to send him the studies I found before meeting with him in December.

So - we'll talk about it.

The balance is tough to achieve between treatment effectiveness and quality of life. I often say with ADT - it's not the cancer that will get you it's the treatment.

BTW - there are treatments to lessen the hot flashes. Mine were fairly crazy, I'm taking Megestrol Acetate and while I might have one or two flashes at night, having flashes during waking hours is pretty much history. There are warnings about Megestrol possibly allowing PCa to advance.. I tried tracking down where this came from, and as far as I could tell it was from 1 report of a patient who had slightly elevated PSA when on Megestrol (we're talking 0.2 or so) and it dropped when he was taken off Megestrol. One report - not a study - not even a retrospective accounting. One report.

I'd suggest talking to your medical oncologist if you have one, or whoever is giving you the shot.

Stellabell profile image
Stellabell in reply to Don_1213

Thanks so much for the reply. Our situation is similar in many regards, from the G9 to the radiation to the time frame. I believe I will stick it out for one more 6 month Lupron shot and be done with it.

Don_1213 profile image
Don_1213 in reply to Stellabell

18 months is pretty much my plan. Since I can get a majority opinion of 2/3rds that it's OK I'm comfortable with it. I'd love to see a report saying 12 months is wonderful, but while I suspect someone somewhere is doing a study - it probably won't have any conclusions in time for me to avoid the last 6 months of treatment.

The only happy thing with 18 months is - I'll be quitting it on my birthday, and at the beginning of summer. Hopefully, I'll be able to be more active next summer - my motorcycle barely got used this summer.

Stellabell profile image
Stellabell in reply to Don_1213

I have an appointment Tuesday with a new medical oncologist for another opinion. I am set on 18 months, just checking to see if switching to Casodex may lessen the side effects of belly fat, joint pain and fatigue. Really concerned the joint pain in my hands is a sign of permanent degeneration.

Thanks for this posting. I'm in much the same boat: Gleason 9, two months of radiation, and two years of Zoladex (similar to Lupron). I am now halfway through the hormone therapy, so a year to go. I've become bloated with fluids, causing pain and stiffness in my hands, feet, fingers, and to some extent arms. I have trouble sleeping, am constantly fatigued, and am gaining a tire around my belly and some breast enlargement despite pretty diligent exercise and diet. I walk over 3 miles a day, but that' s becoming difficult because of painful edema in my feet. I might ask about an 18 month course of ADT rather than the prescribed 24, but I don't want to do anything to compromise my chances. If I survived one year, I ought to be able to survive another, but like you said, the symptoms become worse over time. I'd be interested in hearing and reading about any other research comparing the risks and benefits of 18 vs. 24 mos. of ADT, etc. Since we have similar issues, feel free to shoot me a private msg. if you'd like to compare notes and/or commiserate.

Stellabell profile image
Stellabell in reply to jazzy53

I will be consulting a new medical oncologist later this month before my next (3rd) Lupron shot is due. Regardless of the advice, I will post it here.

Stellabell profile image
Stellabell in reply to jazzy53

I have an appointment Tuesday with a new medical oncologist for another opinion. I am set on 18 months, just checking to see if switching to Casodex may lessen the side effects of belly fat, joint pain and fatigue. Really concerned the joint pain in my hands is a sign of permanent degeneration.

Don_1213 profile image
Don_1213 in reply to Stellabell

I believe that's today, I'd be quite interested in what his opinion is (and that's all it is - an opinion usually based on studies done by other people, and perhaps some treatment experience.)

Don_1213 profile image
Don_1213 in reply to Stellabell

A few papers to read:

Androgen Blockade Can Be Shortened by Half in Patients With High-Risk Prostate Cancer Treated With Pelvic Radiation

theoncologist.alphamedpress...

Shorter duration of androgen deprivation therapy reduces side effects in prostate cancer

healio.com/hematology-oncol...

RADAR Trial: Short- vs Intermediate-Term Androgen Suppression and Zoledronic Acid in Locally Advanced Prostate Cancer

ascopost.com/News/59602

It might be worth referring your oncologist(s) to these papers. I have 2 oncologists who agree with 18 months, and one (urologist) insisting on 24 months.

Stellabell profile image
Stellabell in reply to Don_1213

Discouraging appointment today with medical oncologist. Seemed like a smart, informed younger guy. Was sympathetic to my side effects from Lupron but basically said if none to them were debilitating to stay the course. Both he, my urologist and my GP are in agreement about the 24 month duration. His most potent argument was if there was a recurrence of the PC elsewhere, I could be looking at a lifetime of living on Lupron.

Don_1213 profile image
Don_1213 in reply to Stellabell

I guess you didn't ask him about the results from the 3 papers I posted?

I intend to take the papers along with me, with significant passages highlighted next time I visit my urologist.

My urologist (who I consider the least PCa specialist) always likes to quantify his answer by referring to "Level-3" studies/papers... ie - blind studies, participants chosen at random, etc. Anything else he discounts as theory pretending to be data, or as "cherry-picking" to achieve a desired result. His being critical of papers is probably a good thing - it's made me critical too.

The Radar Trial (third paper I referred to) was such a phase 3 trial.

The second paper also is self-described as being based on "a randomized phase 3 trial" - meaning it should meet his criteria for validity.

While his argument might seem potent - can he really say that by doing 24 months of torture instead of 18 months there is less of a chance of a recurrence? I doubt very much if those words would come out of his mouth. I'm curious - did he know of the recommendations of your other MD's before he made his?

I'd suggest that your GP and urologists aren't the best suited for opinions on PCa treatment regimes. It seems doubtful if either of them actually treat a significant number of PCa patients. or that they attend PCa conferences where new results and studies are revealed and discussed.

My GP doesn't claim great expertise in PCa, he has some patients who have it but are treated for it by specialists, but I find him quite valuable to bounce things off of and have a rational medical review of my thoughts. His are usually common sense answers.

Does your medical oncologist have a specialty of PCa treatment? I went to a good deal of effort to find the very best medical oncologist specializing in PCa that I could find. It's a PITA to go to visit him, but he's been referred to by other leading PCa doctors as the "new Snuffy Smith.." (I also read a quote attributed to Snuffy - don't know if it's true - where he said "He's just like me, but smarter..)

He also is primarily a researcher (4 days a week doing research, then one Tuesday afternoon seeing his very limited number of patients) - meaning he not only is attending the PCa conferences, but he's also sometimes the keynote speaker at them. The reason I considered him the key to my treatment is simple - if the treatments administered by other MD's (I had radiation treatment, so I have a radiation-oncologist) fail - he's the guy I'm counting on to guide me to "what's next.." I want a guy who is really on top of "what's next"..

Casodex has a different mechanism, it's a T-blocker at the cell AR, as opposed to Lupton, a T-reducer at the testes, so switching probably not a good idea at this point.

I would go with monthly Lupron shots from here out to lower the SE's. I'm in the ninth month doing monthly shots, and seems tolerable so far. Muscle fatigue is the dominant SE for me.

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