I had my biopsy 3 years ago 3/4. I had a prostectomy. My PSA stayed down up to 2 years, and started going up. I had cyber knife radiation to the prostate bed which did not impact my PSA. I watched my PSA until it reached 6, and had my first Luprin shot, 3 month dose. 2 weeks later it was like they gave me someone elses body, however my PSA was zero in 30 days, but I couldn't sleep for hours, extreme fuzzy brain, of course hot flashes every 20 min that soaked my clothes and bed sheets. Loss of muscles even though working out, and gained 30 pounds. I was forced to retire when I came down with a case of shingles. My job was a physically intense one. They said the stress brought it on. My oncologist allowed me to hold off on my next shot opting to let my PSA go to 10 before another shot or surgery. Almost there now. The 3 month shot lasted 6 months on me. Pretty much any meds I take affect me longer.
My question is for anyone that might have tried Luprin, and had similar issues, and opted for surgical castration to reduce side effects. Or comments from anyone who has had surgical castration. It wouldnt affect my sexual issues, as the nerves were damaged in my prostectomy.
Hangin in there. Glad my cancer was quickly doused for now with the luprin
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Are there really fewer side effects with surgical castration over luprin?
No. In general, the side effects are the same because they result from low testosterone and not from the method used to achieve castration levels. The difference is that surgery is permanent and you don't need to go in for shots. There is a lower risk of certain adverse effects with surgery. Here's an article that discusses a retrospective study. The authors note limitations to the study, primarily its retrospective design which relies on historical data.
Lupron has been associated with a higher rate of cardiovascular complications in patients with coronary artery disease and/or heart infarctions. The incidence of cardiovascular complications in these patients seem to be lower with orchiectomy
Upon diagnosis I chose castration. A simple elimination of production instead of the INTRODUCTION OF CRAPPY DRUGS. Very predictable anatomical side effects with no psychological side effects. Monthly blood work for checking status, continued 100+ mile a day bicycle rides, walking in competition 5K to Marathons with decrease in muscle and endurance and addition of sweats/hot flashes that became less and just accepted it. GL10 was diagnosis.
I'm the poster-boy for the cardio complications. Ended up with 3 stents. No heart attack, but some fairly strong angina convinced my cardiologist friend that I needed a workup. Lupron did cause a bump in some lipids (but I question if that makes any difference after several talks I heard by David Diamond) which resulted in more statins.
There is some info indicating that lupron may distabilize atherosclerosis plaques (atheromas) making them more susceptible to breaks. I’ll see if I can find the lnk to the artices.
It depends on what side effects you’re hoping to rid yourself with castration. All of them? Not possible.
Hot flashes and sleeplessness can be helped with drugs estrogen patches etc, though I wouldn’t do it myself.
It’s true that Lupron will pretty much exacerbate any physical problems you have. But in the same person, the side effects of the muscle loss, fatigue, sleeplessness and weight gain wouldn’t be any different with castration.
This is because those particular side effects-the ones that affect QOL every day-are the result of muscle wasting from low T-not the absence of testicles OR Lupron.
If you have 30 lbs of weight gain and substantial muscle loss ‘even though working out’ means you need to work out harder and change your eating habits-regardless of which road you choose.
Realize, side effects that affect QOL result not just from low T itself, but from the resulting level of low estrogen. You can add it back in via low-dose patches or gels, or try hormonal therapy that is NOT the standard ADT (Lupron, etc.) or castration.
One of those is bicalutamide, mentioned above by Magnus, which is what I have opted for. I works on the androgen receptor rather than on the androgen itself, so blood levels of both T and E stay high while PSA declines. Overall, this is deemed a less potent and less effective drug for the long haul, but should help me keep QoL for a year or three without assuredly SHORTENING my life by any significant amount.
I have experienced SOME minor side effects, but still easily able to keep working at a moderately strenuous part-time job with ZERO problems.
The other option is high-dose transdermal estrogen, which will knock back T levels but obviously keep E levels high. This is not an option considered "standard of care" in the US, so need an open-minded doc to pursue.
If I knew physical castration would add, say, ten years to my life, then it would be a no-brainer. But more likely it would add a year or two at the expense of diminished QoL for all of those remaining years, how ever many they are. At 60 and without the faintest of symptoms, I'll take my chances and kick the can. When mets get painful, the plan changes!
Transdermal estradiol (tE2) is doing a fantastic job of keeping my PSA down without ANY of the above mentioned side effects...only a new set of boobs. Oh, I've gained two pounds which I'm sure is in the boobs.
I opted for casodex as costs is zero with insurance and side effects are almost none so far, hop to get some milage with it along with lupron. Like you I am kicking the can down the road until it fails then move on to the more expensive stuff, just started it in august. PSA crept up to 6.4 when I started the casodex so will see what the next blood work shows in the fall.
Following this closely!!! My list of side effects were written by Stephen King!!!! I’m on a QoL vacation but my money is on Murphy (law) that I’ll be back!!
Estrogen is off the table because of previous (right!!!!) current cardiac issues. Snip snip was discussed as my only option other than leuprolides though not in any length yet!!!
Looks like (so far) that orchiectomy isn’t the answer either!!!
There is a trial going on in England revisiting the use of Estrogen as the method of suppressing testosterone. So far the SE are less and no increase in cardiovascular symptoms
You had me at “There is” but lost me at “symptoms”!!!
Thanks
I had forgotten that some others had commented about picking my poison! Weigh the risk of patches to stop cancer, with the risk of heart issues. My luck is I survive both and then get hit by a bus 😮😧😦)!
Diethylstilbesterol (DES), a synthetic estrogen, was used extensively in the 60's and 70's as the ADT, with good success,in depressing Testosterone and thus inhibiting prostrate cancer growth, until It was found to cause an unacceptable high incidence of cardiovascular disease.
ADT using Lupron et al also successfully suppresses Testosterone, but without the cardiovascular problems noted above and thus has become the standard of care in the USA
Normally, some of the testosterone in our bodies is converted into estradiol naturally, and so, If testosterone is not present (suppressed by ADT ) this conversion does not happen. and a resultant deficiency of estradiol occurs. This deficiency results in, among other things, hot-flashes, cognitive decline, osteoporosis, mental fog, increased fat deposition, and increased insulin resistance. These effects, to me, relate directly to quality of life and I for one don't want to go there if there is an alternative.
The link I shared is the Stampede study occurring now in England looking at using Estradiol instead of Lupron as the ADT for treating prostate cancer.
The advantages of this treatment are the elimination of the deficiency effects noted above and by using estradiol (naturally occurring in our bodies) instead of DES and changing the route of administration to a patch, instead of a pill, they appear to have eliminated the cardio vascular problems associated with the use of DES.
Castration is the most effective form of ADT because it lowers your testosterone to the lowest possible level.. It also is the cheapest..The side-effect issue is hard to predict because it can be different in each patient.. I would not do castration unless my prognosis was terminal...There's no going back...
Welcome MT aka Empty. Here comes more grief, Would you please provide us with more of your bio data: Age? Location? Treatment location(s)? Gleason score? Doctor's name(s)? Thank you!!! All info is voluntary but it helps us help you and helps us too. Keep posting here for valuable information. BTW you didn't mention your manboobs?
Its sad to read that ADT caused such terrible side effects. I have no clue if removing testicles would be better, but that surgery means that ADT chemicals are not needed. One wonders what things are affected by ADT applied continuously once testosterone is kept at very low level equal to having ball removal.
The surgery to remove balls is fairly easy and cheap, but ADT costs about usd $3,600 per year, and I've had ADT since 2010, so that's usd $36,000, which has all been paid by our Australian Medicare. Cutting balls out would have saved taxpayers quite a bit of dough.
Have you asked any doctor about this?
I had virtually no problems with hot flushes after getting ADT. I had one or two flushes daily but they were not severe, and my mind worked just fine, and flush frequency went to zero after a year. But I was 63, and I cycled 200km a week+ and maybe it was my exercise that stopped me having any bad side effects. But adrenal gland also makes some testosterone, and maybe my exercise stimulated adrenal glands to make just a little more that normal with balls normally functioning.
I cycled 100.0km today, part of my 200km a week cycling at age 73, I had good speed, maybe a little slower than if I had a "full bottle" of testosterone but over last 5 years, nobody over 65yo has ever overtaken me on my long cycle rides around Canberra where I live.
I was diagnosed 2009, Gleason 9, inoperable, Psa only 6. I am currently getting Lu177 therapy after ADT, Cosadex, Zytiga and chemo all failed to keep Psa from rising after a nadir. I'm now having a second round of Lu177.
Its probable that ADT won't keep your Pca in a coma forever, and at some time, Psa will rise, despite low testosterone. Pca can learn to make its own testosterone which is when Cosadex or Zytiga or Xtandi is added to ADT to prolong the hormone manipulation to stop Pca growing fast. But grow it does, and I watched how my mets and their size increased despite all these anti hormone drugs. I had scans and saw what happened.
Lu177 has been best yet to reduce size or completely kill many mets. But if there are countless other little bone mets that are not killed by Lu177, then eventually I'll have so many bone mets that nothing can reduce them. That's my biggest fear, that countless bone mets become impossible to treat, and I cannot have continuous Lu177 treatments. I am waiting for DNA analysis results, maybe I have Olaparib if docs think it might work, but Pca is a sneaky beast, and can outwit the doctors given enough time.
But I have survived 10years+ since diagnosis, and had a good QOL.
Had similar terrible SEs from Lupron the first year on it. So discontinued it and used alternative:
1) Bicalutamide 50 mg/day together with dutasteride 1.0 mg/day. Very few to no SEs and kept PSA around 0.1 for 4+ years at which time it failed and needed to be stopped.
When it was then time to resume ADT:
2) I went on estradiol patches per the PATCH study protocol cited above. Used tamoxifen 10 mg/day to prevent gynecomastia. Feel great on this regimen and very happy with it. No increased cardiovascular risk with transdermal estradiol as the study demonstrated.
Would now choose transdermal estradiol gel over the patches for convenience.
You can also add moderate doses of transdermal estradiol to regular ADT or orchiectomy for the same better SE profile and physiologic benefits.
At least until very advanced stages when the AR may begin “feeding” on estradiol just as it my do with other hormones and with bicalutamide etc.
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