Five years on Lupron, and the side effects of ADT (Zero T) are getting worse with the time-release depot, and then after-injection (3 month Lupron). The fatigue is creeping into a greater lack of and loss of endurance and energy...simple activities literally wear me out. Worried that I'm moving towards vegetating, and being emotionally flat. It's getting progressively worse: with the need to rest, and limit activities.
Strength training and cardio every other day...good exercise routines continental from over 20 years. Even before cancer diagnosis. No matter how I feel, I hit the gym. Healthy diet.
The latest publications (2016) from the NCCN (National Comprehensive Cancer Network) have reported: Side effects from ADT (i.e. Lupron): 1. Become progressively worse over long term, and are cumulative.
My PSA has been 00.00 since surgery. But my Doctor tells me that with the aggressiveness of the cancer, should I stop the Lupron injections , there will surely be a reoccurrence (this was also expressed by two second-opinions). It is felt that from the pathology report description (and aggressive cell type), there is no way that that there are not micro- metastatic in the bones and other parts of the body (lesions or cancer cells too small to be detected by MRIs or CAT scans).
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• Radical prostectectomy. (No RT), four lymph nodes removed. Five yeas ago.
• Prosticent Scan: Hot spots in a few abdominal lymph nodes, also bones (?), and the lining of abdominal cavity. But the false positives run 30% with that scan, with many doctors indicating that Prosticent Scans are useless.
• Pathology: Gleason Score 7 (suspect by Dr that it's actually 8), T3a, capsule penetration, parineural extension, prior PSA 5.4, prostate lesion volume 70%.
• Lupron injections every three months for just over five years. (No other treatment.)
• Subsequent lesions have shown up, but told not to worry (???): Thee on liver, interior of a few lumbar vertebrae bones, cyst (???) on kidney.
• Bone pain (from inside bone), excruciating, comes (cycle lasting around a week) and goes away, then comes back. Hydrocodone for the pain.
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QUESTION: Are any others experiencing progressive debilitating side-effects of fatigue and the progressing depletion of energy from Lupron (specifically), or ADT (generally)? And along with that...problems with controlling emotions?
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I feel your frustration. It's only been 15 months of Lupron Depot and I notice the deterioration of energy and added emotional issues. Have started losing muscle mass and have gained weight in the middle. I have not done the exercise that I should and it has yielded a condition of Osteopenia which is just before Oteoporosis. Forgive my spelling. I need to get back into the exercise for strength and bone turnover. Another issue I have had is that when I take 1200 calcium I get horrible leg cramps that keep me up all night. Really should be getting more calcium.
My situation: Upon receiving the Lupron injection I was only told, (1) To take calcium and vitamin D3...which I do daily, and (2) the injection would "make me tired." Injection...should have been told the plural injections: every three months!
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Through research online I have found out the many things I needed to know, that were not shared with me. No problem with calcium and cramps. And for bone strength, I've been on Prolia injections for two years.
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My concern...really big concern...is that I just can't tell where the fatigue is coming from, and how to overcome being disabled by the energy being drained out of me each afternoon.
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(The topic is "Lupron and Fatigue." The growing cognitive, mental, and emotional issues are another topic! Thank God I'm retired, don't have to go to work, and can sit and cry whenever I lose control (more and more often, or get to the point of being fed up with cancer.)
I can only take 600 a day but I also have developed Osteopenia which is just prior to Oteoporosis. I know I have to work out more but we all know how hard it is to get motivated.
If the reality of smashing bones because you slept funny or sneezed doesn't motivate you, nothing will. I thank God, Nautilus inventor Arthur Jones, the gallon of whole milk I drank every day growing up, and my lifetime of hard physical play most days when I fall in my house (every day) or get hit hard in my sport (many times per day), bounce up again, and press on like it never happened.
So far.
ADT (actually, the low T) will try very hard to erode our baseline store of bone density, so it pays off to begin strong and keep at it (my baseline last week was > 1 sigma above the norm for young men at their peak bone density). The reports say lifting weights isn't good enough, that it takes impact exercise to oppose the ADT, but just what do they mean by "weightlifting"? There's weightlifting like >95% of my gym patrons do it (wave them around for 10 reps and walk away), and there's frigging WEIGHT LIFTING (taking every set to complete failure SLOWLY). The latter, done right, takes MUCH less time, eliminates ALL the risk for people of ANY age, and gets FAR better results, but takes willpower.
Which is better ... snapping bones like painful twigs because you tried to lift your 2-yo grandson or spending a few hours per year lifting weights right and getting admiring stares as your muscles grow? It's your call.
Ummm... muscle gain...generated from what...exactly? I've been lifting since is was a teenager. Hard to see results now with 15% circulating testosterone or to keep any mass for longer than a three or two day break in between. Protein? Sure...but the building agent isn't there.
Arthur Jones invited the world's elite bodybuilders to his then-unheard-of Nautilus facility in Florida several decades ago, with this challenge: I'll pay your air fare if you don't put another half-inch on your biceps within three days ... my way. That's about a year's progress at that stage, so he had a lot of takers. They were pissed when they found out that his way required not exercising at all for those three days. Just sit and stare at the TV or out the window for 72 hours.
Every single man who complied put on more than half an inch.
It's called recovery. Every one of these musclebound champions had been training too often for decades and didn't know it.
I have been on Lupron for eight months. It has given me its blessing.
Definitely feel tired and worn out all of the time. Work out at the Y but I find I can only lift a fraction of what I used to a year ago and can only do cardio for about 20 minutes. Just as bad, I am having memory and thought issues that may be related to "Lupron brain". To cap it off, joints hurt and I am beginning to get man boobs.
No major problems on Lupron for the first three years, as I would cycle out of the many side effect issues after a few days, back to feeling good, and really close to normal. But after three years...these last two years, the side effects are becoming progressively worse. What a fool I was initially saying to myself, "Hey, this isn't really all that bad." Now the side effects are progressively draining my energy (chronic fatigue), my memory (where the hell am I going?), social life (I don't want friends around as much, if at all, am just too tired), and emotionally (depression and panic attacks).*
* Look it up. For emotional issues, while on Lupron, one can't take antidepressants that are serotonin and norepinephrine re-uptake inhibitors!!! Bad interactions.
I have found some calming relief with hydrocodone that pulls me out of desperation.
"I have found some calming relief with hydrocodone that pulls me out of desperation" sounds to me like an addiction in the making. I'd gnaw off my left leg first ... and I can't even REACH my left leg with my teeth.
Hi, I’ve been a “biochemical failure” for the last 6 yrs. I generally cycle lupron at about 12 mo on and 12 mo off. I just wanted to mention I’ve been on the antidepressant venlafaxine (Effexor) for nearly 3 yrs. I take it primarily to prevent hot flashes, but it does help my attitude as well. Talk to your oncologist about it. I wish you well!!
Lupron knocks it down below detectable range. I start Lupron when PSA bumps above 2.0. After 7 yrs this is still hanging around 12-15 months. I then stay on Lupron for 12 mo.
Bob, when I stop Lupron my psa stays down for a few months. Once it starts rising the doubling time is maybe 4-8 weeks so it's fairly rapid. The Lupron is slow release depo so it doesn't stop working immediately after stopping the injections. I suspect another factor might be that my testosterone level may remain below normal given my age. I don't know this for a fact, just a hypothesis.
Sorry to hear that you are having all those side effects. I wonder if my slow jogging is the reason that I don't have the tired and feeling worn out all the time.
I know I have to continue my jogging the rest of my life. Besides keeping my leg muscles strong I think it makes me inhale more oxygen to help my body fight the cancer so that it doesn't return. That's my theory about exercising
I have been a gym-rat, bodybuilder for over 20 years...continuing even after the diagnosis of cancer (the impairment of fatigue, etc. has only become a bitch gradually over the last 1 1/2 years out of the 5 on Lupron).
I continually do strength training with free weights and machines hitting the gym every other day (off day to recover). Plus cardio...treadmill, getting my pulse rate to a sustained 130 – 150 bpm.
All my friends and social relationships are centered around Fitness (strength training and cardio). Son there is a lot of motivation and support when I'm discouraged, and (progressively) feel more and more like shit.
Through the progressing side effects from treatment (ADT), I amaze even myself how hard in push myself...mainly so as not to become disabled and vegetate.
Conclusion: (a) Keeping healthy through intensive strength training and cardio (although growing fatigue is messing with that big time). (B) Healthy diet with supplements: High protein (with added individual proteins/amino acids), vitamins and minerals, antioxidants, fiber, and low carbs (Lupron: damn, I don't want to get fat!!!). (c) Motivations for keeping active with friends, and keeping engaged with hobbies...although growing fatigue is also screwing that up (fly drones for outside activities.."DJI Phantom 4" drone, plus "DJI OSMO" video). [Check out my Facebook page: Drone videos. Plus a lot of selfies for affirmation that even though I have advanced cancer, I still can look healthy and well. If I look good, I feel good...one trick for coping.]
( Facebook: William Cooper, Savannah, Georgia. /william.cooper.566 )
Congrats! I do the same but probably not to the extent you do. I golf 2-3 times a week and work out on the golf off days. It really has helped my attitude and strength.
I have had no issue with lean, muscle mass (I do intense strength training), and haven't lost strength. I take a healthy dose of arginine and lysine. I don't have an issue with the physical (am 72 years old), but over the last 1 1/2 yeas of the five on Lupron, being totally in tune with my body... fatigue, lack of energy, and endurance is becoming progressively worse. Am following the same routines I have for the past five years (plus came into prostate cancer as a weightlifter, body builder), and can't figure out the factors contributing to these fatigue issues. "What am I doing wrong?" I ask myself.
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Am wondering if the worsening fatigue is just apart of the treatment that I have to accept...or to die? I have so many things that I want to do, so many activities, but I can see the ability fading away...into a tired-ass quality of life that I don't want. Compared to the first three years on Lupron in which I wasn't really bothered or concerned.
I was given a book to read regarding Prostate Cancer...professionally part of my job was research, so I went into depth online researching most every aspect and perspective of Prostate Cancer, the treatments, and side effect issues.
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The growing fatigue is not documented or addressed in reasearch...initial responses to ADT and Lupron is, but not the long term situation.
Have you tried to also do aerobics or doing a slow jog everyday. That might get more oxygen into your body . I also use the CPAP mask for my sleep apnea. It forces air into my lungs during my sleep at night.
There’s plenty of books which explain the importance of testosterone for a man. You just can’t be the same with low T no matter what you do. Imho this is the biggest SE of ADT. I’m looking into TRT since it’s been proven that T does not cause PCa
Gus. Where did you view this study. I'm reading that Arginine promotes prostate cancer tumor growth and that there are actually treatments that lower circulating arginine. I would like to use the supplement...but...my cancer very aggressive. It only takes a few months for its return post any treatment
I was only on ADT (Lupron and Casodex) for 26 months (on an ADT vacation right now). On the whole I feel I tolerated it well. However by the end I was feeling that the side effects, especially fatigue, were cumulative. I feel for you. Best of luck!
Just a quick note ,I was on zoladex for twenty six months and fatigue really hammered me,I started taking modifinil .. Provigil in the states, really helped with the fatigue and brain fog . A Senior nurse I worked with suggested to me she said I was suffering from adrenal fatigue because of the of effect zoladex has on the patuitiry gland ,never really thought it would help but talked my doc into writing me a script glad I did.
However it seemed every time I got a handle on one thing another would pop up . Got to the point I was taking more meds then my age:-))) I decided too hell with it I quit stopped the zoladex shots and started easing my self off the meds . It's been two years ,my Testosterone went from 0 to 500 in Six months my PSA has been rising slowly from 0.01 to 0.04 as of four months ago . When my PSA hits .2 I will go back on ADT I decided f#$@ it life is to short enjoy while I can . By the way william killer photo .
79 years old. On lupron going on three years. No fatigue. Hot flashes seem to get worse. Also on Predisone, Zytiga and xgeva. Leg cramps occasionally from pednisone. Guess I am among the lucky ones. Big problem now is to get insurance co. To approve bone scan and cat scan to see how we are doing.
Some of you are prime examples of why I do not trust doctors. "You MAY get tired", the doc said? The literature says not only that "AT least 90% of you WILL get tired" but that "by tired we mean bone-crushing fatigue like nothing you have EVER felt before and all the sleep in the world will make no difference because it is not related to sleep or rest." It usually adds that it hits athletes even much harder. (Sounds like statins, which research shows WILL cause disabling muscle pain in virtually ANY man who does strength-building exercise. My pain hit overnight after about 12 years on a statin ... a couple of years after I began lifting and the day after I added plyometrics to my weight-lifting regimen. My doc ordered me off statins that day. Many have ordered me back on, but my standard answers include these facts based on hundreds of studies:
1. Statins' medical downsides exceed their benefits.
2. Their benefit is anti-inflammatory, not anti-cholesterol, and there are healthier ways to get that benefit.
3. Cholesterol has nothing to with heart attacks. In fact it's healthy for us.
4. Men over 65 live longer with higher cholesterol.
5. Women with the highest cholesterol at ANY age live the longest.
6. We can make FAR greater improvement to our lipids profile simply by greatly reducing our consumption of sugar and starches.
Back to exercise. Two VERY effective ways to reduce our gym time when hammered by low-testosterone fatigue (or ANY time, for ANYone of ANY age) are Superslow® strength-building and HIIT. Go to youtube.com/watch?v=jeFdYy8... for 12-15 videos on Doug McGuff's Superslow® "Body By Science" techniques and Google HIIT for interval training details. The bottom line is that in less than 5% of the time most people spend on treadmills or actually lifting weights, these techniques will make you much healthier and often stronger than the usual do. (Nautilus inventor Arthur Jones tried to get a champion bodybuilder to switch to Superslow® lifting. He tried it, pronounced it "Too haaaard", and went back to his old ways. The next year a Superslow® contender beat him out for the world title.) As for HIIT, it's how a guy too busy with his career to log high miles trained to reach his running goal. You may have heard of him and his goal: Roger Bannister and the Four-Minute Mile. For you and me, the reason for HIIT is a very long list of FAR better benefit, much less harm, and MUCH less gym time than aerobics. I'm hoping both of those will carry me through ADT much better than the old ways of lifting and moving. They both take more willpower because, as Arnold said, "They're haaaard", but they take < 10 minutes per week, not hours.
As for "controlling your emotions" on ADT ... can the rest of you guys imagine either of these scenarios if that's William's actual photograph?
1. Seeing him bawling in the gym?
2. Having the balls to razz him about it?
AS for "Am wondering if the worsening fatigue is just apart of the treatment that I have to accept...or to die? I have so many things that I want to do, so many activities, but I can see the ability fading away...into a tired-ass quality of life that I don't want. Compared to the first three years on Lupron in which I wasn't really bothered or concerned."
I hear you loud and clear. My cancer is just a few months behind yours, and I have resigned myself to giving up the most important activity of my life for ADT so I won't WISH I were dead by next winter. I'm encouraged to hear you skated for three years on ADT; that's on the good side of the bell curve. Because every ADT chapter or paper I've read about ADT said it makes us feel like road kill, I swore many year ago to avoid ADT until it made me feel BETTER. At PSA >50 and doubling every 4 months, I no longer have that luxury. Our doubling time is all-important.
Random, unexpected, powerful fluctuations between fits of anger, laughter, extreme sadness, and even bawling are part and parcel of ADT for most men. If and when I reach that point, I expect to own a fleet of T/gym shirts reading all sorts of things such as
• "I have cancer" or "I'm on chemo." ... "What's YOUR problem?"
• "In 5 minutes I'll feel better, but you'll still be [fat, ugly, skinny, drunk, whatever]"
• "I just improved my health more in 12 minutes than you did in two hours."
• "Work smarter, not longer."
There must be some funny slogans, too, rather than snotty ones. Besides, my friends know I'm fighting cancer, and who cares about the rest?
Re "I just can't tell where the fatigue is coming from, and how to overcome being disabled by the energy being drained out of me each afternoon"
Neither does medical science. They can explain neither the cause nor the solution. It could spell the end of ADT for me if it's severe and cannot be mitigated by exercise, a keto diet, and medical marijuana. (Seriously; it seems to be better than MANY of the medicines our doctors give us. In fact, my oncologist studies and lectures on it as a very beneficial complementary treatment. It has beaten the best care mainstream, evidence-based, Standard of Care medical practice can muster in MANY cases of cancer and in many peer-reviewed studies. Its primary acceptance barrier is its reputation as a recreational drug.)
RE the muscle and bone loss ... bone preservation w/ADT but w/o bisphosphonates (nasty drugs) requires impact, not just weight lifting. I haven't figured out yet how to achieve that w/o excessive joint impact. Even running doesn't help the upper body's bones.
I get my chest irradiation next week to help prevent breast growth and pain. Once either begins, it's irreversible. Tamoxiphen works better, but has some SEs many oncologists try to avoid. My docs all insist that chemo- and ADT-brain are very rare problems. EVERY related peer-reviewed study say those docs are full of crap. It's a newly-admitted phenomenon they didn't hear about in med school, and it is reportedly devastating to a majority of chemo pts and many ADT pts. It may keep me from even starting chemo.
Yes, that is a photograph of me. see the post of photos on my Facebook page: (William Cooper, Savannah, Georgia. /William.cooper.566). I've tried to document my trip with this cancer and treatment, through descriptions and photographs. Will be 73 years old in two months.
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Speaking of trusting doctor (what can one do when one knows nothing?):
• Refered from Emergency to Urology for a general follow-up after a urinary track infection treated and cured.
• Had digital, rectal examination, and PSA test every year before going to Urolology. And had the same diagnostics while at Urolology (digital and PSA).
• Was diagnosed with an enlarged prostate, and treated for two months with Rapaflo and Flomax.
• While at Urolology for a follow up appointment, I asked for "testosterone therapy" as I'm a bodybuilder, weightlifter and wanted to bulk up a little more.
• The doctor indicated that he didn't prescribe testosterone without a biopsy to make sure that there was absolutely no cancer in the prostate. Hey, No problem.
• A routine biopsy was performed with 12 cores, and a week later the test results came back. I sat there and the doctor came in to the room, he opened the file, read just a bit of the Pathology Report, looked up at me, and said, "Oh shit!"
• 11 of the 12 biopsy cores had cancer: Gleason 7 or 8.
• Scans and prostate surgery were subsequently scheduled, and Lupron (ADT) was started at mediately. That's when I was told nothing more than the Lupron shot would "make me tired."
• Radical prostectomy: The surgical pathology report information is noted in the first post (above) I made in this thread.
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And I've been in Lupron, ADT hell ever since for just over five years. Not many choice.
"Speaking of trusting doctor (what can one do when one knows nothing?"
I'd say you've done the right thing: start reading. You, as I, have learned a great deal since that first biopsy. Now we're playing catch-up, and some oncologists are easier to catch than others. The all understand the cellular biology and chemistry better than we laymen ever will, but many of us can surpass their practical knowledge very quickly, as evidenced by the many stories of their ignorance of things as basic as the likelihoods of each of ADT's many SEs.
I have been on treatments for four years. Was told by Roswell dr. I had a max of three years. Lupron is rough but I'm still here. Good luck to all with this bastard of a disease.
Yes, with severe cycles of ADT side effects...the literature does down-plays not only the severity, but they also reports that they deminish. Bull!
The NCCN (National Comprehensive Cancer Network) in their 2016 updated literature on Prostate Cancer therapies...they report that ADT side effects not only become more severe through progressive treatment over time, but the effects are also cumulative.
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From reading other sources, I was naïvely made to feel like a damn whimp ass, cry-baby. They reported that the side effects were most always minimal and deminished over the course of treatment. Only around 5% to 10% of patients were troubled by side effects. Live and learn. One can muster up only so much energy resources day by day, week by week, month after month trying to convince oneself that "it's all in your mind."
"The NCCN (National Comprehensive Cancer Network) in their 2016 updated literature on Prostate Cancer therapies...they report that ADT side effects not only become more severe through progressive treatment over time, but the effects are also cumulative."
That's more in line with everything I've ever read about ADT, not to mention that ultimately it causes PC cells to become castrate resistant ... a fatal condition. i.e. ADT kills us through any of several paths it leads us down, including castrate resistant prostate cancer, diabetes, cardiovascular disease, and more. The big question in each case is whether it was the ADT or everything ELSE in our lives that actually led to that final blow. That's one reason I'm so strongly considering Dr. Bob Leibowitz's Three-Pronged Protocol, which includes 9 or 13 months on ADT and other FDA-approved drugs, followed by -- everyone hopes -- many ADT-free years of MUCH milder drugs, super-high testosterone, and no cancer symptoms.
If you think we're being sold a bill of goods on ADT, wait 'til the chemo-brain reality comet hits the atmosphere. It's already in low-earth orbit, so to speak, as its severity and likelihood are just beginning to hit the press. That, or the recent spate of peer-reviewed studies on it are proved wrong. I consider it a more frightening prospect than my cancer(s), and will weigh the evidence very carefully before accepting chemo.
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I had heard about getting irradiation to inhibit breast growth from ADT drugs. When I mentioned that to my urologist he just scoffed at it. Weird and distressing side effects aren't HIS problem.
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Our gynecomastia (man-boobs) and mastalgia (permanent breast pain, possibly severe) choices include prevention and double mastectomy. Prevention has virtually no side effects, mastectomy certainly does have SEs. Our prevention options are pre-irradiation of our pecs or lifelong tamoxifen. Extensive research says tamoxifen works twice as well as irradiation. My med onc listed 8-10 very serious tamoxifen side effects from head to toe as long as we're on ADT, but EVERY study says he's full of crap, that it is a very benign drug unless the pt is prone to blood clots.
The docs say the two related breast problems occur in maybe 10-15% of ADT pts; extensive literature says at least 75%. The docs say irradiation or tamoxifen prevent maybe half the cases, the literature says well over half. Since irradiation takes but minutes and is imperceptible except for maybe a mild sunburn, it's a no-brainer for me. "Weird and distressing" don't begin to describe the issue; the pain of mastalgia is sometimes so bad that it forces some men to abandon ADT altogether, and you'll find medical photos online of men with D-sized breasts from ADT. The biggest ones I've seen in the gym locker room were B's, but then would YOU go to the gym sporting a pair of C's on an otherwise trim body?
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Thanks for that info. I hadn't heard of tamoxifen.
Yes. And when I reported bone pain to my urologist who is managing my cancer situation: "Don't worry, we'll just keep monitoring it." Then much later when it was severe pain, said he doesn't prescribe pain meds, referred me to a neurological surgeon. Scans revealed lesion in the vertebra, so referred to spine specialist and pain management.
I'm under the impression that culturally it's immoral to seek relief from pain: "Buck-up you whimp ass, cry baby!"
Insurance pre-approval is a pain in the ass. My Dr. has one insurance specialist to deal with that issue. It would be interesting to find out what guidelines the insurance companies are following when in opposition to the diagnostic and treatment recommendation of the physician. The patient becomes a playing in the triangle: insurance company, physician, and patient.
At times when claims are denied, I just say, "What the hell?" Often when claims are refilled, they are accepted, but over the months and years, one gets tired of, worn-out from the cancer, the treatment, and the insurance bull-shit.
I spent over an hour on the phone with my insurance company. They were dragging their feet on authorizing my first ADT (eligard) shot. WTH? Standard treatment for prostate cancer and they are delaying while the cancer is busy growing? Even the gal at the insurance customer service was shocked that this was going on.
Mine has rejected every chemo, ADT, Lupron claim over the last five years...each claim has to be appealed by the doctor's insurance specialist. Then they pay after many months...I'm on Medicare...soon practices won't want Medicare patients.
I was informed that a "third party actuary" is sent the claim and that "third party" that is actually contracted by the insurance is the one that makes the determination. They are in the pipe-line to save the insurance company money.
I'm no expert but I have some thoughts on your post.
First of all, it sounds like there are good reasons to suspect that you still have prostate cancer, but it also sounds like you don't think it's been proven. So my first thought is that you should get proof, one way or the other. I suggest asking for the following: No more ADT for a while. PSA and Testosterone level tests at least every three months, maybe even one every one or two months.
If the T level rises and the PSA stays down, that's a hopeful sign that there is no more cancer. If the T level stays down and the PSA stays down, then there may or may not be cancer, but there's no harm in staying off the Lupron for a while. If the PSA level goes up, then there is reason to believe that you really do have cancer. Personally, if I were in that situation I'd want to continue testing for a few months to find out how fast it's rising.
If it turns out that you do have cancer and it needs treatment, how about trying a different kind of hormone therapy. As I understand it, Casodex does not block the synthesis of T but does block its uptake in the tumor cells. It will give you a different set of side effects but may be worth trying. Estradiol is a completely different type of hormone therapy that also fights prostate cancer and is said not to have the Lupron like side effects.
I suggest that you research these options.
If you try an alternative type of hormone therapy you would benefit from having a doctor who understands them, probably a medical oncologist specializing in prostate cancer, NOT a urologist. Since these are more or less non-standard treatments, you might do best looking for a doc at one of the research hospitals. If you're in the U.S., have a look at: cancer.gov/research/nci-rol...
By the way, estradiol is one form of estrogen. It's been used for prostate cancer for many years. People stopped using it when it was discovered that taking it orally resulted in serious side effects, but skin patches are now available that, supposedly, completely avoid the negative side effects. The famous PCa specialist, "Snuffy" Myers has said that he prescribes it to men who have become sick and tired of Lupron and it has both relieved their symptoms and continued to hold down their cancer. I presume that, like everything else in this disease, each patient's mileage varies.
Again, for this kind of treatment, it's HIGHLY desirable to find an oncologist who has experience with it, knows how to figure a proper dose, and knows what to expect and knows how to recognize when something is going wrong.
Alan
The day I couldn't carry a six foot ladder from my truck to the job site, was the end time for me. I was about four years on Lupron when that happened. Now, three years later, I can't do much. No T absolutely destroyed any manly-man I had. Some men like yourself are quite lucky to be able to do some sort of work out while fighting the debilitating effects of the ADT. Unfortunately for me, I wasn't one of them. When it hit, it hit hard, I feel like I've been through the wringer. You'll now when, when you just say I can't do it anymore. Very demoralizing.
Joe
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Joe, I'm going to go off on a tangent. I went to my endodontist yesterday for help with an intermittent toothache. I felt silly when the problem tooth wasn't identified. Today, a Saturday, I am sitting here with a raging toothache. It has taken my mind off ADT and PCa.
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Ed,
I have three wisdom teeth left. One has a huge hole made by a 100K bar. I still have the rock that did it. Suck some whiskey through the tooth. It doesn't matter whether you like it or not, it works.
Oh, yes. I've been in many situstions where by the energy just depletes right out of my body (as you describe)...leaving absolutely no physical energy at all!!! And then along come no energy for even thinking, or any mental activity.
And we're told: "It isn't so bad the side effects will go away." Oh. My God!
And there I no way you can explain to those around what is happening to your body.
There was a post a while back that I can't find, but I found it very interesting.
It had to do with body odor, or the lack of it. So, to be manly, you would want a normal T level, say 400. On the other hand, a young boy has no T, and will not until puberty, so he may sweat, but not stink. Those of us on ADT regress back to being just a big boy it seems.
Now, I wouldn't go blabbing about this, it could be quite embarrassing.
Fatigue come with the territory. Please keep up your exercise routine. I lost my resolve for working out years ago and I regret it. I had 30 EBRT in spring of 2002 for stage 3c PCa they could not get to during the radical prostatectomy I had in November 2001. January 2003 I had to have a TURP to remove a section with a scar tissue urethra blockage. I've been on a succession of anti-androgen hormone blockers ever since. Did Lupron every 3 months, then switched to Zoladex every 6 months, then to Eligard every 4 months, then Trelstar every 3 months, now back on Lupron every 3 months. This is augmented with daily Casodex since I began Trelstar. I do not have much pain from cancer, but it has caused a cascade of other problems beginning weight gain that lead to Type 2 diadetes, sleep apnea, CAD, peripheral neuropathy, and the beginning of connective tissue degeneration. I was declared disabled (SSDI) in 2011. I still get up every morning. I am very active in my church. I volunteer tutor k-5th grade kids from a local very rough housing project and spend a lot of time with my grandson. I can't stress the importance of staying active enough. Giving back to your community goes a long way towards keeping you spirits and self esteem up.
IT PISSES ME OFF how many patients are not told what SEs to expect before taking meds. I try to tell them when they ask (in support groups, for example), but they either don't want to hear it (well, my doctor didn't tell me that), or they don't really want to know (yeah ... you DO, if you want to expect any semblance of a normal life), or they don't believe it for any number of reasons.
Just last night in our local PC forum, some guy was asking why he was getting so tired. Ummm ... HE'S BEEN ON ADT FOR THREE MONTHS. Apparently his oncologist hadn't bothered to tell him that bone-crushing, nightmarish, relentless, incurable fatigue is the NORM for ADT patients, that few escape it, and that there is no known cure for it besides a testosterone level of several hundred. Worse yet, he starts chemotherapy next week, and hasn't even heard of chemobrain or neuropathy, both highly likely and both very often disabling, often permanently. His oncologist is an incompetent ass who should lose his license. (Of the guys represented in this forum, two have had chemotherapy. Both got chemobrain -- just as the literature suggests -- but only one had recovered.)
All these guys would have to do to make MUCH more informed decisions is read a few chapters in even one bookstore PC book. What a tragedy, at least with men with ANY options, which includes most of us.
Good thread. A couple thoughts from me (I've been on Lupron for 11 months:
- I've read that it's recommended to get about a 1 to 1 ratio of calcium to magnesium. You can get the supplements of 1:1 plus eat lots of nuts and seeds for increased magnesium intakes. If you don't get enough magnesium then the calcium might not be absorbed into the body and can be stored in kidneys, heart arteries etc.
- I don't know if food has an effect on cancer but I'm eating all the foods that some say are helpful in fighting cancer growth. I have Coronary Artery Disease too so this eating helps me keep my arteries clear but the Lupron is working against that since it shrinks/weakens the arteries. With that said, I recommend eating mostly vegetables and veggie protein and stay away from other forms of protein and meat, poultry etc. I still have lean muscle, lift weights, play tennis etc but Ive only been on the Lupron for 11 months, not 5 years so take it with a grain of salt but I actually have more energy now than when I was working full time and eating meats, carbs and higher calorie loads. The reduced amount of calories keeps me more energized.
- Matcha green tea powder - culinary grade USDA organic - gives me sustained energy drinking it in my tea, improves my mood, antioxidants galore.
- Observation - I didn't know that the cancer could cause bone pain while the PSA is at zero. What's causing the pain: the Lupron effects or the cancer? That's a scary thought that you are getting so much pain even while your psa is at zero.
- Michael Milken has been on ADT for around 25 years and supposedly nothing else. Its rumored that he's done intermittent ADT so you might want to try intermittent treatment. Also, try to reduce your stress if possible through the use of meditation, yoga, prayer, laughter (funny movies and TV etc), massages). Listening to your favorite music on great headphones or in your car on a leasurely drive.
- Think about trying Zytiga and Pregazone when the times feels right.
yes and yes......mood is like a woman going through her changes sweats chills pain like you said goes away comes in waves...this drug sucks...I hope to be off after taking it a little over 2 years at the end of this year.....check close....hopefully cancer don,t come back if it starts s to but it wont..back on FIN LUPRON......this drug is freakin EVIL
I've been on Lupron for about a year and a half. The fatigue and bone/muscle pain come in waves (lasting about a week, I guess). More distressing is a more recent development of ridiculous, out-of-control panic. That, and the burning sensation when I pee now, is reducing my quality of life (but better than not being alive at all). I had been on 60 mg of Cymbalta and was getting some breakthrough sadness, so the doc put me on Prozac. I get the 6-month Lupron injection, so it is what it is. The insurance company is telling me that the side-effects are coming from the Lupron. All the other meds have been adjusted and readjusted, so I can't really disagree.
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Starting PSA was 5,006.4
New G10 to the group
Ok to take a Lupron Vacation?
Lupron lifespan and just a little more!
1st post - ramblings for future treatment decisions & so much research info to digest
