Side effects of Lupron? : Seven years... - Advanced Prostate...

Advanced Prostate Cancer

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Side effects of Lupron?

Rebel1
Rebel1

Seven years after radiation therapy my psa started rising. Biopsy showed cancer in one sample out of 12. Psa increased from 0.98 in October 2018 to 1.38 January 2019. Had bone scan and CT scan. No evidence of cancer. Nurse called yesterday and said urologist had looked at scans and wanted me to come in Monday for a lupron shot. Since yesterday I have been reading about this shot and the side effects are frightening even though my urologist had told me earlier if we went with the shots the biggest side effect would be hot flashes. This is certainly not what I am reading from people who are on the shot. I am 70 years old with CAD and wide spread arthritis. I am seriously scared of the side effects of this shot given my other medical problems. Could someone who's situation is similar to mine offer some advice based on their experience.

32 Replies
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I just had my 3rd 4 month shot and the side effects for me are more pronounced the first 2 weeks. Fatigue, stiffness, brain fog, hot flashes and mood swings were tough to deal with. A simple trip with my wife to the grocery store was sensory overload and I had to leave. I do recommend to keep active as much as possible. I go to the gym, walk a lot and go to museums just to keep moving. You may need something to help you sleep. I use melatonin plus some meds. Rest is also important. Today is two weeks to the day since the last shot and I am finally starting to feel better. Keep In mind better is all relative. You will never feel 100%.

The bad things about Lupron are that it kills your libido, it gives you hot flushes, and it reduces your energy levels. The good thing is that it may suppress your cancer. For some men it does so for years, for lucky men (are any men with cancer lucky?) it may work for many years. Between cancer and Lupron I would choose Lupron every time.

You can combat the side effects of Lupron. Daily exercise and a little extra rest will go a long way in making most of your life pretty livable. If you had an active sex life, you won't be interested in it any more but, if you force yourself to try, you may be surprised to find that some things still work and are still satisfying to you. And in any case, if you are married, be sure to be good to your wife! She will also have been stressed by your cancer and too many men become self-absorbed and turn away from their wives when they are in treatment. They push away their very best helper and partner in their struggle.

I don't think you should consider Lupron or similar drugs as terrible. They really aren't. You'll still be you and you'll still be able to do most of the things you've always liked to do. Music, books, movies, friends, family, hobbies, will all be just the same as they always were. And if worst comes to worst and you find you'd rather die than keep taking Lupron, then you can always stop taking it. You'll have to wait for the 3 or 4 months injection to wear off, but when it does, you'll be your old self again. If you are very lucky, you may be able to do "intermittent therapy", where you stay on for a year or so, then get off until your PSA begins to rise again, then start again. I knew a man who managed 15 years that way, with half of them off the Lupron.

There are other drugs that may also work with somewhat fewer side effects. Bicalutamide is sometimes used. Dutasteride is sometimes used. Various estrogenic hormones are sometimes used. But it is generally thought to be a good idea to start off with Lupron and then try switching to one of the others when the cancer has been well controlled for a while. To try something other than Lupron you'll want to find a real prostate cancer specialist medical oncologist. A lot of oncologists don't really have much experience with other drugs and aren't equipped to advise you about them. If you are in the U.S., see: en.wikipedia.org/wiki/NCI-d... for a list of the cancer centers endorsed by the National Cancer Institute.

I know all of this is very scary, but it's manageable. Be calm and do what has to be done. I think you'll find you can handle it and continue to live a fulfilling life.

Best of luck.

Alan

Rebel1
Rebel1 in reply to AlanMeyer

Great information. Thank you so much.

FCoffey
FCoffey in reply to AlanMeyer

My experience is rather different. Lupron didn't prolong my life, it started my death. It was a slow death but a hell of lot faster than the rate I was dying from prostate cancer. I went from zero symptoms to being unable to function at work, at home, or socially. Instead of jumping out of bed in the morning eager to see what the day would bring, I was perfectly content lying in the bed for 4 hours and staring at the ceiling, getting up to have a mayonnaise sandwich for lunch. I didn't just lose my sex drive, I lost all drive, all ambition, my memory, and my ability to think.

I'm young, early 60s, and don't particularly like the idea of being cheated out of my seventies. But I'm not willing to sacrifice being vigorous, active, and intelligent for the chance to grasp at a straw promise of a few more years as a depressed, hopeless, useless moron. Especially since those years will be a living hell. I'd probably drink myself to death; more fun and faster.

It's great that some men do so well on Lupron. I don't. I give a lot more weight to quality of life over quantity; others feel the opposite. There's no right or wrong here.

Between cancer and Lupron I would choose cancer every time.

AlanMeyer
AlanMeyer in reply to FCoffey

FCoffey,

I'm sorry that your experience was so horrible and I understand your decision. I disliked Lupron and was lucky to be able to get off it (it was only given to me to enhance my radiation treatment) and not to have too terrible an experience. Maybe one of the other drugs will extend your life without the side effects you experienced. Have you had any luck with the others? If you haven't tried them, try to find a medical oncologist who specializes in prostate cancer and is familiar with Casodex, Zytiga, Xtandi, Apalutamide, or even the older drugs like DES and the other estrogen analogs.

Best of luck.

Alan

FCoffey
FCoffey in reply to AlanMeyer

Alan,

Thank you. I have tried and continue to explore different alternatives to the not-so-slow death by Lupron.

I'm familiar with the other drugs but also familiar with their side effects. I am discussing options with my oncologist and the rest of my team.

As for a medical oncologist who specializes in prostate cancer, I've interviewed several. Sadly, they were all horrible human beings and I wouldn't let them touch my dog, and I don't own a dog. My oncologist works in a small community clinic but she is as well informed as any of the huge egos I met, has access to the same drugs and diagnostic tools. What she has that they do not is compassion and concern, viewing me as a person with my own life and own agency. She happily reads papers I suggest (if she hasn't already) and offers ones that she thinks I should read.

When she saw my suffering on ADT she agreed to work with me to try BAT. We both learned a lot. It takes a lot of courage for any doc to color outside the lines like that. In a big-name clinic the peer pressure and institutional barriers make deviations from the "standard of care*" nearly impossible.

I understand the appeal of specialists but in my experience the benefits are overrated. Competence matters, but compassion, respect, and empathy matter as well. Those attributes seem to be excluded at most of the big-name clinics and hospitals.

*standard of care = same damn thing we do to everyone

Tommyj2
Tommyj2 in reply to FCoffey

BAT ???

FCoffey
FCoffey in reply to Tommyj2

Bipolar Androgen Therapy. Basically you stay on ADT but once a month take an injection of a whopping great dose of testosterone. I found subcutaneous injections were best. The idea is to raise testosterone levels well beyond what any man produces naturally. Typically the target is above 1500 ng/Dl, roughly 2-4 times a normal healthy level.

The ADT means that the testosterone level falls rapidly, by the end of the month your are back to near-castrate levels.

The theory is that the very high levels of T basically poisons cancer cells that have adapted to very low levels of T. During cell division a complex process is twisted and the result is double strand breaks in the DNA. That's fatal to any cell. The rapidly falling T then resumes killing testosterone-dependent cancer cells.

The practice is rather more complex, as it often is. There are multiple clinical trials underway, and a number of clinicians who are wiling to prescribe BAT for their patients. BAT definitely works very well for some men, but not most men.

Essentially 100% of men on BAT report a huge improvement in quality of life. Let's face it, life as a eunuch sucks. The monthly roller coaster ride from high to low and back again is rather extreme and unnatural, but at least for me it beat the hell out of the living death of ADT.

I found that my muscle mass increased quite rapidly during the high T periods, because I use weight lifting to keep muscle and bone health while on ADT. There's a reason body builders inject T and other steroids.

Another effect of BAT is to re-sensitize the cancer to Zytiga, enzalutamide, etc. That seems to happen even in men that don't see their PSA decline while on BAT.

Tommyj2
Tommyj2 in reply to FCoffey

VERY interesting... thank you!!! I have a suspicion that this is not very popular as a first line Tx but I'll bring it up at my first meeting with my MO ( she is relatively new to the field and might be open to the " latest" in treatment innovations having finished residency at MSK and advanced training in GenitoUrinary Cancers.... fingers crossed....

Jvaughan0
Jvaughan0 in reply to FCoffey

You don't write like a moron... just a very intelligent, angry man trying to find his way. Let go of the anger and disappointment, and seize the day.

FCoffey
FCoffey in reply to Jvaughan0

I got past anger some time ago. I am and will remain a vocal critic of butchering and torturing men for 3% or 4% chance of benefiting them, especially since there are so many alternatives.

I've been getting Lupron shots now continuously since 2013. Hot flashes were bad at first but over time they are not so bad, I have a small fan by my bed and chair which I can turn on whenever I need it. It for sure causes fatigue, exercise helps and I usually will take short naps when I need them. Cancer brain is a problem you have to live with, exercise helps with this to, it usually takes me a little longer to get going in the morning. You can get mood swings, I watch this closely. The Lupron affects your bones, my oncologist gives me a xgeva shot every 3 months to help with this. The xgeva has its own set of side effects. The Lupton pretty well kills your sex drive. But I'm still alive and have learned to live with it. I was in the dumps when I first started all this, but it is amazing how you can adjust with the right attitude and go on living.

Good luck

Dennis

I understand. I guess if we want to live we have to do what we have to do. Thank you for your reply.

Jbooml
Jbooml in reply to Rebel1

At your age you shouldn’t notice much of anything...at 65 I’m having zero side effects except a post injection T flare that had me in near rigors..thought every muscle in my body was going to cramp...just have a shot of your favorite alcohol handy...that had me on cloud 9 in T euphoria within minutes. Doc didn’t know how to inject it and omitted the local so it felt like rattlesnake venom going in...quite the sh!t show 💩..The great thing is that despite the sub optimal inoculation...the Eligard crashed my PSA to near zero. I still am having successful conjugal relations with my SO...I know...no one’s going to believe that one...I attribute it to Dr Ruth who always insisted the biggest sex organ in the body is between the ears..🤩

AlanMeyer
AlanMeyer in reply to Jbooml

jbooml wrote: "I know ... no one’s going to believe that one"

I believe it. I was also able to have sex. I had to force myself to do it each time, and I didn't do it as often as before but, once my wife was aroused, that got me aroused too and I had a wonderful time.

Alan

Jbooml
Jbooml in reply to AlanMeyer

So , are we pushing our luck getting our dander up.....i kinda view it as a contrarian FU to the creepy crawlers

AlanMeyer
AlanMeyer in reply to Jbooml

I don't see it as pushing our luck. I see it as asserting our continued humanity in spite of adversity.

My husband felt much fewer side effects from his Elegard treatment than from Lupron.

Rebel1
Rebel1 in reply to DL57

I am going to ask the doctor about that when I get there Monday. Thank you so much.

AlanMeyer
AlanMeyer in reply to Rebel1

As I understand it, there are four closely related drugs with the brand names Lupron, Eligard, Zoladex, and Trelstar. They all work the same way - by stimulating "leutenizing hormone releasing hormone" - which, paradoxically, stimulates the testicles to produce more testosterone. The testicles do that for a week or so (the testosterone "flare") after which they shut down from overstimulation. I think that most of the side effects of the drug are due to the loss of testosterone, but there are small differences in the four drugs and I'm not surprised that they have at least a few different side effects - some of them having to do with the way they are administered (for example a butt injection vs. a stomach injection.)

Another, more powerful testosterone suppressing drug is degarelix, brand name Firmagon. It works in a different way and gets the testosterone level closer to zero.

My suspicion is that most doctors pick one, or have one picked for them by the hospital or insurance companies that they work with or, in some unfortunate cases, whatever drug company salesman they have become cozy with.

Alan

Jbooml
Jbooml in reply to AlanMeyer

Funny you should mention the injection site which agreed varies widely in the various patient monographs..some insist on intramuscular...I thought that was nuts so I told my doc to put it in the fattest...and I’ve got a few...roll on my belly. She didn’t argue...Was this beginners luck because I couldn’t have had better results...sounds like most of my intuitions...indeed. The angels are always best caught in the details...lucky or not.😇

In a nut shell.....IT’s A CRAP SHOOT!!!!! ADT kicked my ass!!! When it was done, it kicked it again!!!! But don’t run away yet.....many, many others, not so much....but it will effect you in some form, guaranteed!!!

Also guaranteed is that your Urologist won’t tell you SHIT about the list of possible SE’s! Don’t know why, they just don’t!!!! I’ve read that a number of times!!!!

Anyway;

One of my (many) complaints was new joint pain / stiffness, mostly my left hip. Upon getting it checked by my PCP, they said it’s arthritis!! Funny, never hurt before XRT & ADT, but now I have arthritis.....really?!!!

So, yes....I read that many people complain about joint issues! That might be a concern for you!!

But I believe that I’ll / you’ll be a lot stiffer when dead!!! I advise that you avoid that!

Thus the crap shoot!

* You can pass (likely not wise). Kind of “daring” cancer to show it ugly face again?!!!!

* Take a shot (literally) and take a break! You’ll get a taste of the SE’s but not for long. See what happens as you monitor your PSA levels for months after and act accordingly, they behave, go another few months test again! They don’t behave, go to next bullets!!! (sensible with minimal risk).

* Just go full blown ADT and see what you get for SE’s, maybe you luck out! Once again, you can stop at anytime!!!

* Surgical castration. No drug SE’s, same effect as chemical castration, but permanent!!! Plus you loose weight, (what ever your nuts weigh anyway)!!!

You are a lot more fortunate than I was when confronted with ADT. I didn’t know about sites like this when I joined the club! My doctors told me the same things as you and as the SE’s came on, I would wonder if I were going crazy or if dimentia was setting in, to start with!!!

Not a fun place to be but you’re not alone!!

Jc

Thanks Jc. Everything you said makes sense. I am going to print it and every time I'm feeling like hell I will read it and keep going. I will be posting my side effects as they progress.

I’ve been on lupron for nearly five years and this is what I found.

Hot flushes seem to be getting less and less now

Loss of sexual drive completely got use to that doesn’t bother me

Fatigue yes but at 72 can’t expect to be dancing all night

Weight gain is annoying although I seemed to have stopped gaining

Can’t say I’ve had brain fog (or maybe people around me are too polite to mention it)

Regular gym swimming walking etc helps as does a Vegi diet. I had minor hip pain due to mets five years ago none now.

Hope that helps just a personal experience

My PSA was 180 five years ago steadily reduced with minor blips now 6

Everyone is different. ME:

Hot flashes = no sweat (pun intended) little to none no problem.

Sex = put little willy in a cigar box.

Tits = get a size 32B bra.

Other than that, it's a piece of cake.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/16/2019 10:25 PM EST

Do you have a healthy heart?

Mkeman
Mkeman in reply to Advo__cate

Speaking of healthy hearts...recent studies show that men on ADT have a significantly higher risk of heart rhythm problems and cardiac arrest. I developed atrial fibrillation several months after starting Eligard and Zytiga. If you haven’t had an EKG I would encourage you to ask for one.

Rebel1
Rebel1 in reply to Mkeman

Thank you

Advo__cate
Advo__cate in reply to Rebel1

They also need to look for possible calcifications in your arteries before you begin Lupron. Degarelix has less risk for those with mild CDV, but the risk is still there. If heart complications run in your family please be checked before going forward with Lupron (agonists).

Thank you.

Wondering if you ever DID go on the Lupron or some other medication.... I am in a similiar situation re: arthritis and am terrified of doing anything that will make it any harder to exercise than it is already... Unlike yourself, my psa started rising a year after radiation therapy and I decided to ignore it.. It is now seven years later and my psa is at 5.9 with a rather slow doubling time. Bone Scan is clear but I have yet to have additional scans.... I am STILL undecided as to whether to let this disease go on unchecked or to use meds.... my qualify of life already sucks ( I live alone, have limited funds and many friends and family have moved away) my hobbies ( Trail Work... building and maintaining Hiking trails) are my primary social outlet and already deeply affected by my arthritis... I can't take NSAIDS due to problems with my kidneys and Lupron would be the final nail in the coffin..... I know I'm playing with fire not doing something about the progression but I'm not at the point of being TOTALLY stupid yet... if my doubling time begins to creep down , or other scans show mets in distant regions THEN I would be confronted with a choice that HAD to be made.... I know , for myself, if I was in your situation with PSA just beginning to climb seven years out from radiation and only one positive core out of 12 in my biopsy I would be in NO hurry to begin Lupron.... I'd consult a medical oncologist as well since the standard for biochemical recurrence post RT is greater than or = to 2 ng/ml from your lowest point ( nadir). You might be told that you can afford to hold off for a bit.... ( though, admittedly, most professionals are ADT happy rather than face the ire of a patient for whom they called it wrong).... Hope that whatever choice you make/made works(ed) out for you......

There are always options. How about ADT+abiraterone, administered until the PSA falls by 50%, then stop? No cutting, no burning, just manage the disease as the chronic illness that it is.

I'm not claiming that a g9 with mets faces the same choices as a g6 with a PSA of 8. But they both have choices, and they are unlikely to hear about most of those choices from people who sell cutting and burning.

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