Adt side effects!: Hello everyone I'm... - Advanced Prostate...

Advanced Prostate Cancer

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Adt side effects!

Prostate57 profile image

Hello everyone I'm Wes and I have had 45 rounds of radiation and now I'm receiving firmagon shots and struggling with the side effects..weight gain,hot flashes!

37 Replies

Welcome Wes! I did the same over six years ago. It worked. Thank God! My first shot was a one month firmagon. Then onto Lupron .. some fellows suffer little side effects . I was opposite . Fatigue syndrome sarcopenia osteopenia neuropathy and joint pains are my foes. No signs of pc but also no T.. Workout often if you’re able. Or else you’ll lose agility and all muscle. I disliked the shots for life and opted for an orchiectomy in 2017. Life without t is a charm . Drive and motavation are not so easily had . Stick to your reason to live . Keep moving amigo.. Hang in there. Apc treatments are a real s o b for most . We can relate . Scott

Prostate57 profile image
Prostate57 in reply to Lulu700

Thanks Lulu700 &Tall_Allen...I'm trying to muster up the strength for weight training!

Lulu700 profile image
Lulu700 in reply to Prostate57

Just don’t go dormant even if you just feel like sleeping. I had slot of that during and after Rt. But I had complications that you hopefully never will have. Pc tumors blocked my kidneys causing failure and putting tubes and a foley then stents in me for almost two years. I lost everything. That’s why I say stay active as possible. Everything is under pressure while doing treatments. Be kind to those around. Those first two years seem like a blur to me now . Get through it . And get back to healing and recovery. Be well . 🙏 Scott

London441 profile image
London441 in reply to Prostate57

Do that, because the strength training will do more to kill the side effects than everything else combined.

A0007720 profile image
A0007720 in reply to London441

Hey Wes, I followed London0441's advice on weight training, and it CHANGED MY LIFE. Weight training is by far the best of the tricks for dealing with the fatigue and depression from ADT.

Important to note that you don't need to lift heavy amounts. I just do 65 pounds for curls and 50 pounds for chest presses. I spend about an hour there at the gym. But do this regularly, 3x per week at least.

I WISH I knew about the importance of weights at the beginning of my ADT. I had been doing elliptical and bike. They're good for the head. But WEIGHTS is the secret.

I like Planet Fitness. They're cheap ($10 per month after a $50 annual fee). They have lots of machines. If you make appointments, you can have a trainer help you for free!

Working out sucks! So I listen to podcasts and youtube videos. That's helps.

BLESSINGS.

Schwah profile image
Schwah in reply to A0007720

You speak the truth. It’s made a huge difference for me. 3 days a week. Not huge weights. All muscle groups. Light weights three sets to exhaustion.

Schwah

Lulu700 profile image
Lulu700 in reply to Prostate57

Please push yourself . If we lay dormant everthing fades away .. keep moving . It good to have a push or a workout or walking partner . My wife got me up when had severe fatigue . Get through this and get back to living again . 🏋🏽‍♂️

Lulu700 profile image
Lulu700 in reply to Prostate57

Hire a trainer if you can .

Schwah profile image
Schwah in reply to Prostate57

Don’t muster. Do. Huge difference. Three timed a week.

Schwah

Exercise more, of course. Hot flashes may be reduced by venlafaxine, estrogen patches, Megace or acupuncture.

I can relate to most the side effects men have with Firmagon & now the MO wants me to go to Lupron which was worse for me years ago.Sore back, stiff joints hot flushes & now sudden loss of temper?

I can only advice exercise until the pain over comes the brain fog crap that comes with this ADT.

Pardon my negative attitude please.

Nalakrats profile image
Nalakrats in reply to ARIES29

Pardon not needed!

A0007720 profile image
A0007720 in reply to Nalakrats

Hey Wes,

I followed Nalakrat's recommendation to get a full thyroid panel blood test. Please search for Nal's post for the full details, but I think that "free T3" is the key element that Nal cited and that he himself controls for his own case TO CONTROL FATIGUE. Most docs only have thyroid hormone TSH measured, but it's important to have the components T3 and T4 measured as well.

Turns out my own levels were not far from Nal's recommendations, but maybe you'd benefit from the test just to check in your own case.

Interestingly, with the thyroid panel, I found that I was low in Vitamin D! This is a surprise since I take supplements (1000 IU=25 mcg) per day, and I eat a lot of salmon. But low Vitamin D is a known cause of fatigue and depression! Please do have it checked with your thyroid panel.

I'm just repeating back the learnings that others have imparted to me here on this group. Look at me here, am I a good parrot or what?!

Lulu700 profile image
Lulu700 in reply to Nalakrats

I beg your pardon ! ❤️

Nalakrats profile image
Nalakrats in reply to Lulu700

LOL----Nal

BluesmanNick profile image
BluesmanNick in reply to ARIES29

ARIES29If you are experiencing sudden loss of temper and a negative attitude, try anti-depressants.I find them great! Best decision for me!Also, it is possible that SSRIs (like Escitalopram, etc) have a benefit for hot flushes too.

ARIES29 profile image
ARIES29 in reply to BluesmanNick

Thanks for the advice Bluesman

Lulu700 profile image
Lulu700 in reply to ARIES29

Loss of temper!, oh no! 😳 I get that ouch!,

ARIES29 profile image
ARIES29 in reply to Lulu700

Hi Lulu, I guess mood swings would explain it better.

Lulu700 profile image
Lulu700 in reply to ARIES29

My first year i was full of rage and self loathing. At 53 how could I have screwed up so badly.. at some point in the grieving process I accepted my lot in life of weakness. 😎✌️

ARIES29 profile image
ARIES29 in reply to Lulu700

As I see it, It takes inner strength to go through this & we all have to accept our lot in life or perish.

Lulu700 profile image
Lulu700 in reply to ARIES29

Every living thing will perish . Today we live 🏋🏽‍♂️👏👏

Exercise helps of course. But exercise, diet, and medications will, at best, minimize a few of ADT's side effects. Don't obsess too much about these things. Try to think of this as the new you, the new Wes. Don't keep comparing to the old Wes. These things are bothering you only because the old Wes didn't have these things.

I think this strategy is similar to or part of Mindfulness.

Apologies if it sounds like psychobabble.

Prostate57 profile image
Prostate57 in reply to Gearhead

I'm trying my best...FYI my Psi before yesterday's shot was 0.008..It has me wondering!

Wes, I too had radiation and also brachytherapy six years ago in 2015, then the prostate cancer came roaring back after four years. so I then had chemo. Two years after chemo/docetaxel, it came back again. metastasizing on my spine. So after a year of Eligard and Firmagon shots, I am now on the daily Orgovyx tablet. Since the chemo just over two years ago, my PSA has been undetectable, but the side effects of ADT --- fatigue, loss of sex drive, hot flashes, etc. --- are here to stay. Exercise is helpful, and you'll find helpful tips as well in this community. Struggling with side effects is much better than the alternative!

I'll second Tall Allen's comment about Megace for hot flashes. It helped me a lot, reducing them by about 75%. I was on it the whole 3 years of my primary treatment's ADT duration.

I never took anything for the fatigue, but it was the worst, just debilitating. I have read about using Ritalin to help, but never tried that. Exercise does help some.

One more item not usually discussed anywhere is low dose estradiol skin patches. They can offset most, if not all, of the typical side effects. Something else to discuss with your doctor, though he will typically have a knee-jerk negative reaction to the idea.

Atlasjack profile image
Atlasjack in reply to VHRguy

I used an estradiol .1mg patch and in about a week all traces of hot flashes were gone. No regrets.

VHRguy profile image
VHRguy in reply to Atlasjack

That's great! I've read that a blood E2 (estradiol) level of 50 pg/mL or a bit better is about what it takes to protect bone density and relieve a lot of side effects from no T. Getting it up higher, 100 pg/mL or better, may help a person feel their best (mine's a bit higher than that, and I feel great). Generally, the patch dose is numerically pretty close to the blood E2 level, tweaking for the units. So a 0.050mg/day patch more-or-less yields a 50 pg/mL blood E2, a 0.100mg/day patch yields around 100 pg/mL blood E2, and so on. There is a wide variation though in how different people absorb it.

I've been on lupron, firmagon, and Orgovyx at various times. My personal experience has been less side effects on the Orgovyx versus the other two.

You may not be eligible for Orgovyx, which is a pill, and depending upon your insurance it could be quite costly.

On Orgovyx my hot flashes are minimal requiring no medications, I do not experience any brain fog, I have noticed mild loss of strength and stamina and muscle mass but I also work out 3 hours a day 4 days a week at the gym as well as do a lot of walking and hiking while I hunt. At one point several years ago I needed back surgery while on Lupron and was unable to work out for a number of months. I noticed an immediate increase in the Lupron side effects when I stopped working out.

Scott

naples2021 profile image
naples2021 in reply to wilcoxsaw

Hello Scott,Interesting the fact that you needed back surgery. Did the surgery help?My father always has complained of sciatica nerve and back pain but after 5 months on Eligard he started to experience hot flashes and more back pain and joint pain.

wilcoxsaw profile image
wilcoxsaw in reply to naples2021

I had a ruptured L4 L5 disc. Too many years of weightlifting. Did the surgery help? I think it did but I still have numbness in my right foot but I am much better than I was before the surgery. The back issues had nothing to do with ADT.

Control your diet, try herbs, see a Chinese doctor.

A0007720 profile image
A0007720 in reply to winkoliu

Hey Wes,

Winko is right about diet. He told me his history and tricks. And he's a pro on handling ADT side effects! There have been other posts here about the benefits of the Mediterannean diet. I believe this diet has helped me.

As to Winko's good suggestion on alternative medicines, please do try 8 weeks of American Ginseng. I was skeptical about this until I read published Mayo clinic research stating that it helps the fatigue. Will cite the references after work today.

The side effects are from low testosterone...and any of the ADT drugs will have similar because low T is the goal. I switched from Firmagon as the shots were very painful for me. The oral pills now available for antagonist ADT are much easier for me.

ARIES29 profile image
ARIES29 in reply to JPnSD

I will ask for them next visit & I bet ORGOVYX is not available here like the patches & other treatments that appear to work.

Greetings,

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/22/2021 10:54 PM DST

Lulu700 profile image
Lulu700 in reply to j-o-h-n

❤️

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