How long after first ADT dose (Firmagon in particular) does fatigue hit the fan?

Vague reports imply that the first wave of fatigue hits when testosterone drops (one day w/Firmagon, 2-3 weeks w/Lupron), followed by MUCH worse, HORRIBLE, intractable fatigue a couple of months later. We know that a few men escape the fatigue almost completely. When did the first lazy day hit you guys, and when did the BUS hit? Is there some point at which we might guess that we're going to miss out on that most-common ADT side effect?

[John-carp]

Hi

I was able to offset any real fatigue with a good diet (low carbs, etc), walking daily, and importantly for me with acupuncture. Working some 70 hours per week and feel great.

[Hidden in reply to John-carp]

Thanks; sounds encouraging ... except for that "work" bit ... at ANY number of hours per week. I've never worked those kinds of hours, and retired early once I realized that I may get sick and die some day. I've been eating a ketogenic diet for a couple of years now simply because it's a GREAT way to eat and to maintain a high level of energy for sports, and has completely cured several medical problems from toenail fungus to lousy lipid profiles that MANY doctors failed to fix. Turns out that my integrative radiation oncologist is also a therapeutic acupuncturist and has studied medical cannabis treatment. (He says the latter greatly helps both the efficacy and SEs of chemo.)

He was surprised to hear that I still feel and measure (in the gym) zero fatigue (in fact I feel even more energized) 9 days into fast-acting Firmagon. He hopes it may portend clear sailing, but then there's that 90th-day bus impact many men feel ... not to mention chemo, should I decide to accept it. (Need more proof first.)

[Jvaughan0 in reply to Hidden]

I think part of any ADT start up is the mental anticipation of fatigue based on what we read on the web. Don't get me wrong, it is a big slap in the face of "all things male" perception, but the mind is and always will be what truly defines us as male. In my mind, even moderate daily exercise is critical to keeping fatigue at bay in part by encouraging the mind and body to stay positive.

[Hidden in reply to Jvaughan0]

I don't care about "all things male". I just don't want to get hit by the fatigue bus. It's not about ego; it's about QOL. If some guys can play soccer and tennis on ADT, I wanna know how.

[Hidden]

My main "male things" concerns are strength and energy (sex and continence left the building w/my RRP years ago). Low/zero T is reported in the medical literature to destroy those physiologically as it wastes our muscle tissue. If there are exceptions, and I turn out to be one of them, I would French kiss the ugliest troll I could find, tell my med oncs where they could stick my chemotherapy and its low efficacy-to-SE ratio, and slide into home plate hollering "Geronimo!". If hard exercise matters, if my nutrition is as good as I think it is, maybe I'll be an exception. After a two-hour lecture on medical cannabis last night from my integrative radiation oncologist, I plan to add that to my regimen also. Its list of established medical benefits is like no other single medicine Big Pharma ever dreamed of, and the dosage advised is "sub-whoopie" so we can actually work and think. I talked for an hour with a very vital man in the audience who has Stage IV colon cancer in his lungs, found chemo left him dysfunctional and miserable, quit it for medical marijuana, and resumed his careers as a professional musician and a tennis coach. Oh ... and the radiation techs can just baaaaaarely see his tumors any more.

[Hidden in reply to Hidden]

I am interested in medical cannabis. Blend of THC/CBD? How does one ingest a "sub whoopie" dose? I am debating whether to get a medical marijuana card. I am worried that the new AG may declare war on medical marijuana dispensaries.

[Hidden in reply to Hidden]

I expect the books on the topic will lay all that and MUCH more out in black and white. My integrative oncologist's website explains it, but I'm also a detail guy. If the AG starts a war, he'll have one on his hands. The Death With Dignity crowd is already waging it, and I plan to enlist. If I'm ever forced to use a gun instead of a physician-ordered compassionate drug to protect my wife from watching me die of one of our most horrible and prolonged deaths, I will do everything in my power to make sure the media are there to document it. My life belongs to ME, not the GD government.

[JimVanHorn]

I used vitamin B-12 2000mcg chewable tabs to increase energy after I started Lupron. My RBC count had dropped from radiation and my B-12 level was 130. Three months later my B-12 level was 760 (no shots needed). I also use a CPAP mask which increases my oxygen level to my RBCs when I sleep or nap and helps me overcome fatigue in the afternoon. My ferrin level was normal so taking iron supplements did not help. It has been five years now and I no longer have fatigue. Whenever any human (male or female) changes their sex hormone levels up or down this causes symptoms that are called "menopause". Symptoms include dizziness, fatigue, hot flashes, irritability, etc. So whenever a man starts or stops ADT therapy this reaction to the body occurs and lasts about 18 months. No big deal for me, I am very lucky.

[Hidden]

Re: "Symptoms include dizziness, fatigue, hot flashes, irritability, etc. So whenever a man starts or stops ADT therapy this reaction to the body occurs and lasts about 18 months. No big deal for me, I am very lucky."

Lucky, indeed. Those common symptoms would/will mess up my life dramatically.

• 1 nighttime hot flash = awaken = no more sleep that night. It's called sleep maintenance insomnia, and I've fought it most of my life. It could be an ADT dealbreaker.

• Dizziness on top of my long-standing very poor balance (I fall at least daily) could incapacitate me. Add the neuropathy of chemo and I may be unable to walk safely. Not gonna do that to myself.

• Fatigue: Almost universal w/ADT. I've accepted that expected blow to my normally high vigor, and will be trying everything I know to minimize it, from medical pot to glutamine to hard gym workouts ( extra sleep doesn't relieve ADT-induced extreme fatigue.) That's why my biggest question in this thread is how the fatigue curve looks for others. e.g., Is my complete lack of fatigue well into T suppression promising or meaningless?

• I've always been irritable. Lange, in "PC for Dummies" (an excellent book, BTW) says"can transform Mr. Nice into Mr. Extremely Irritable". Other books say ADT will exacerbate normal emotional swings. That scares the crap out of me and my wife, as I’ve always been quick to anger. Sleep deprivation exacerbates that. (My local med onc says it mellows us out. One of them, on average, is wrong. Time will tell.)

[Hidden]

I got hit by the ADT 'bus' on the way home from getting the shot. I'm glad the wife was driving. I felt really sick and was tempted to go to the ER. I recovered a bit but was still unsteady on my feet. I felt better the next day. I've had no really bad problems with fatigue or hot flashes although I have had trouble waking and then falling back to sleep. My diet isn't all that great. I do exercise at a gym and walk the dog most evenings. I take lorazepam to help me sleep. A ceiling fan in the bedroom helps when I do feel warm. My internal thermostat does seem finicky -- I am forever adding a layer or taking away a layer; go from too cold to too hot and back but no night sweats or anything. I'm retired so I sleep as much as I want. I use soy milk in my cereal after reading that soy is helpful in battling hot flashes. ADT (eligard) has been tolerable. I am looking forward to my six month shot wearing off in a few weeks. As far as feeling grouchy, I seem to be in better spirits than ever. PCa will give you a new perspective on life. No longer working for a crappy corporation and having to deal with office politics also helps.

[Hidden]

LORAZEPAM??!!! ARE YOU AWARE OF ITS "MAJOR SIDE EFFECTS" (You should check with your doctor immediately if any of these more common side effects occur when taking lorazepam)

Drowsiness

relaxed and calm

sleepiness

Oops. Never mind.

I retired decades ago, but insomnia still messes with my life. I'll just have to see how that goes for me on ADT.

[Hidden]

I'm way ahead of you on all that. Became a dedicated wintertime gym rat (the warmer 7-8 months are dedicated to windsurfing) soon after my surgery 12 years ago. I'm just trying to find out whether, when, and how thoroughly ADT will knock the vast majority of active men flat on their backs for the duration, as all the literature claims it will. If I find that I'm capable against ALL published odds of high-level windsurfing while on ADT, I will forego chemo altogether and call my treatment close enough.

Of course, I won't know whether that's possible unless I postpone chemo until "that bus" -- the bone-crushing, intractable, total fatigue the literature almost guarantees -- drives by and misses me. I'm just trying to determine its schedule, if it has one. I've read three months, and my med oncs are going to say I'm nuts to wait that long. (My integrative onc, OTOH, has already hinted at his agreement that a 6-month life extension is a debatable victory if it's in chemo hell. Sorta makes me envy people with faster demises that give them little time to think about it and question their doctors.

BTW, I cut my workout time by at least 95% and get better results by working smarter and harder than my first few years. I'm convinced that Superslow® lifting and HIIT provide FAR better results than Ye Olde Three Sets of Ten and all that harmful, counterproductive aerobics/cardio crap that even Kenneth Cooper admits was a mistake. I now lift (i.e., time under tension) about 3-4 hours per YEAR and pack my "aerobics" into a dozen flat-out 30-second sprints. Each of those very short sessions takes a week to recover from, so I get best results hitting the gym about twice a month for each of those two workouts. Strangers often comment on my endurance and physique, so it's not just my own impression that it's working. Some pro weightlifters and bodybuilders are experimenting with going 2 to 3 weeks between their Superslow® workouts, because many of them gain strength and size more rapidly that way. Some college football teams work out that way because it works better and gives them more time to work on football skills. (BTW, a study showed that weights are not sufficient to prevent ADT-induced sarcopenia, that we must add impact. I'm working on that.)

Food? Not a problem. Keto nutrition for a couple of years now with excellent results on many specific issues. Just recently studying intermittent fasting for both general and cancer-specific health. It's totally effortless on a keto diet; you simply stop eating until you decide to eat again. In ketosis, you don't get hungry, you feel great, your basal metabolic rate increases, and you shed fat rather than muscle. If extra protein helps prevent sarcopenia, my 125-175 gms a day, depending on exercise level, should be plenty. The rest is mostly fats + heaps of colorful vegetables + a few berries. The good part? I get to eat all I can hold any time I want. My wife has shed 80 excess pounds that way. (We have eaten "supper" -- our biggest meal of the day -- at about 6 AM for decades now. It has MANY advantages.)

From what I read, that's all gone with chemo, because it turns our sense of smell and taste into a psychedelic swirl of unpredictable horrible tastes that even nausea-preventing drugs can't correct for. That may be strike 3 for chemo for me.

[Hidden in reply to Hidden]

I'm going to have to research that keto-genic diet. I hope I never need chemo. The scary part there would be the "chemo-brain" effect others have talked about.

[3100connecticut]

Sorry I can't help with your question. Just started Firmagon five days ago. But...What exactly is BUS? Something else to watch for? Thanks.

[epfj3333]

That's good advice and I do all the things you mentioned. My problem is more specific. I can handle the hot flashes and fatigue any time of the day except on the golf course. This may not sound like a big deal except that I'm a professional golfer. I don't mind the sweating but the fatigue makes it very difficult to finish a round and it's really affecting my level of play. I'm looking for something that could boost my energy for just the four hours I'm on the course that will not counter-act the Firmagon, which is working well.