Severity of side effects from Firmagon/Orgovyx

[rbiker]

And another question...my radiation guy thinks that I could get away with 1 year of ADT using the above drug(s) and not unduly increase my risk. I'm trying to get some anecdotal evidence on how 'debilitating' these drugs are. I understand the likely side effects, but want some real-world data. For example, it's important to me for diabetes control that I exercise 3-4 times a week. Trying to get an idea of how hard is it would be to "get myself off the couch"? Thanks!

[Tall_Allen]

It's a vicious circle - the more you don't get off the couch, the harder it will be to do it. If you can afford a trainer, that might be a good solution.

[rbiker in reply to Tall_Allen]

Thanks, that vicious circle thing is true even without the drugs! So expect a little more...

[Aodh]

I’ve recently had my last shot of Zoladex (every 3 months for 3 years), has the same testosterone lowering effects as the drugs you mentioned. The side effects profile of these drugs are very similar, what’s usually different is how each man’s body reacts to them.

If you have the will to carry on exercise, then you’ll do it. It would be normal to have an off day where you can’t be bothered, but that’s not the drugs or the cancer! I was pre diabetic prior to starting my ADT and yes the drug pushed me into the full diabetes range. I have through diet and exercise managed to get myself back to the beginning of the pre diabetic range and fully expect that once the effects of my last shot wear off in May this year that I’ll get myself back into the normal blood glucose range (although I’ll still be classed as diabetic and subject to the regulate blood checks etc.

I am a self confessed couch potato of long standing (well sitting!) and have been most of my 62 years! The side effects of ADT can be mitigated and reversed considerably once your course has completed. I have used ceiling fans to deal with hot flushes (usually triggered by stress more than anything) but medication is available if they become bothersome. Yes fatigue does hit, but if you exercise regularly (which I didn’t!), it becomes manageable. I suffered with headaches, but given that I have both classic and common migraine; that too was no surprise and again easily managed with painkillers and I’m not hooked as I only took them when actually necessary.

Not that I would recommend ADT unless for cancer! I have managed quite well; I worried that I couldn’t take 3 years of it, well I have and whilst I wouldn’t describe them as the best years of my life, they weren’t the worst; those will have to wait for the book!!

I appreciate your apprehension about ADT, but it is manageable so long as you have the will keep moving. A lot of men give in to the fatigue (that’s not a criticism) especially if they have already been living a sedentary lifestyle; those with a history of exercise suffer less fatigue especially if they continue exercise.

I hope that has been of some help to you; prostate cancer is a bummer, but once caught early, it is treatable and curable.

What got me off the couch was the desire not to let the diabetes take control of me.

Hugh

[rbiker in reply to Aodh]

Thanks Hugh, great observations.

[PingPongGuy]

I'm only a month into Firmagon (unfortunate name for a testosterone blocker, wouldn't you say?), but I've felt mostly fine. I've been swimming and doing weights several times a week. I've had the occasional (5X/day and night) warm flash (but no sweating), and without going into too much detail, Firmaintgone. I had a week-long red and somewhat painful reaction to the first injections to my stomach, but that's over. I hear that some of the effects take longer to develop. Good luck

[rbiker in reply to PingPongGuy]

Haha, didn't make that name connection! Thanks sharing your experience so far.

[1Ubspaine]

I recently completed 6 months of Firmagon, I am 65 and in relatively good health, but overweight.Pre treatment my only exercise was walking, I added weight training during treatments and am glad I did.

I had somewhat more severe reactions to the shots. The first one being a double dose caused a few days in bed, nausea etc.., not a good start. Thereafter I usually missed work the day after my shots, but would be fine the following day. My RO stated this was unusual. Fatigue and hot flashes-yes, but the hot flashes lessened over time.

J just took my last shot a few weeks ago. Glad they are over, not terrible and I know they really helped my probability of cancer staying gone.

[wilcoxsaw]

I just finished 12 months of ADT which included 10 months of Orgovyx. I worked out 4 days a week, 3 hours a day, mostly weights with some cardio. There is no reason why you can't continue to workout. It may be more difficult and you will not have your regular stamina and strength but it certainly is something that can be done if you have the right attitude. During that time I also kept my body weight within 2 pounds of where it was when I began. I am 66.

There will be many men that will talk about how tough ADT was, the majority of them likely are not serious about maintaining their weight and working out and as TA stated above they are caught in that vicious cycle.

[maley2711 in reply to wilcoxsaw]

3 hours/day ?????????????????????????????

[wilcoxsaw in reply to maley2711]

Yes sir. 20 min stretching, 40 min treadmill, 2 hrs weights chest/shoulders/triceps M/Th and back/biceps/legs T/F. Been doing so since 1975.

And you question me why?

[maley2711 in reply to wilcoxsaw]

Didn't intend to question....sorry. Amazed actually..... few would have that determination, or ability !!! I guess if I saw a randomized trial that showed some amazing improvement in overall or PCa survival. .....I might consider giving over my life to such a rigorous program.....even then, probably couldn't do 3 hr. I average , hopefully, 45 miutes walking...some days up to 60 minutes, some just 35, some few zero. Even that much seems like a chore . But, maybe not a chore for you...different strokes.....

[wilcoxsaw in reply to maley2711]

Any exercise is good anything you can do will certainly help.

[wilcoxsaw in reply to maley2711]

Exercise is something that I have always enjoyed long before cancer came into the picture, I've always tried my best to keep in shape

[Horse12888]

There is no way to know in advance how difficult the SEs will be. I heard an MO say that 15% barely notice, 15% are totally miserable, and everyone else is somewhere in the middle.

Hiring a trainer is a great idea.

If you use Orgovyx, your T will recover much faster at the end. That's a Godsend; I wish it had been available when I did ADT on 2015/16.

[Boonster]

I think TA has captured the challenge well. In effect, use it or lose it. I say this as a 74 year-old male and life-time exerciser who has been on Orgovxy for seven months. I have experienced hot flashes and fatigue, some muscle weakening and a strong loss of libido.

But, and I think this is important to stress, all of these have been manageable. For me, it takes more discipline to exercise. but I have continued my exercise routine. The libido is almost gone, but not enough to prevent me from remaining sexually active. But I'm in a relationship with a black magic woman, so there's that!

Good luck to you, whatever course you decide to take. B.

[Scout4answers in reply to Boonster]

Have one of those black magic women on my team as well, they should not be underestimated.

[Boonster in reply to Scout4answers]

HAHAHA, wonderful post, Scout4. So true!

[Hidden]

i used a trainer for 9 months. Still do actually. its frustrating seeing your muscles melt away, even though you're training. But its not as bad as not training. I shudder to think what would have happened if I did nothing.

[London441]

The more you exercise, the better you’ll feel and the more likely you’ll be consistent with it. Both lifting and cardiovascular exercise are essential. All old guys need it anyway, regardless of the presence or absence of disease.

A trainer is a excellent suggestion if you can afford it.

The hot flashes, the fatigue, the rising blood sugar, the blood pressure, fat gain, muscle loss, cardiovascular issues, cognitive function- all of it is a threat. Exercise is by far the best antidote, and the ultimate quality of life enhancer.

Christina Dieli-Conright at Dana Farber does a lot of research on the topic. June Chan and Stacy Kenfield at UCSF are but a few other examples. They all have presentations with plenty of data. Great luck to you!

[Scout4answers]

7 months into ADT - Lupron and Zytiga I have never felt better

Sex life continues unabated

I attribute it to a daily exercise program- (weight lifting and indoor recumbent bike) and love and support of a good woman.

Started taking swing dance lessons, we practice several times a week.

I was not a couch potato but neither was I a regular exerciser. My mindset is my good life now depends on it.

[rbiker]

Thanks everyone for the words of wisdom and experience! The clear answer is "exercise"! I feel now that I have a better idea of what to expect if I go this route.

[JRPnSD]

I had taken both drugs. Firmagon is painful....side effects due to low T are the same for both. Exercise has to be constant....really helps.