Countering the side effects of low testosterone/ADT

[sandy4510]

My husband was on firmagon for 18 months and we're taking a break. He's been off of it for over 8 months. He still feels awful some days... and I know from from all your feedback that it's part of the deal. Everyone recommends excercise, and he does that.... both strength training and cardio, but many times it makes him feel worse the next day. We eat a mostly plant based diet, no alcohol, no smoking, etc. Has anyone found any supplements that help with their overall feeling of having energy and well being? CBD oil? Cannibas? Just wondering if there is anything we've overlooked. He describes it as someone turning on a switch... one minute he feels pretty good, the next minute it hits him like a mack truck. Thanks for your feedback.

[GP24]

I suggest that you measure the testosterone level. This recovers very slowly after firmagon and it may be that it has not recovered significantly yet.

Here is a list of the side effects of ADT, from what you describe I think it is depression and emotional lability. He could take drugs against depression:

Sexual

Erectile dysfunction

Loss of libido

Genital shrinkage

Physical

Weight gain

Gynaecomastia

Muscle weakness and atrophy

Metabolic

Osteoporosis

Anaemia

Hot flushes

Hypertension, diabetes, heart disease, lipid abnormalities

Emotional/cognitive

Depression

Emotional lability

Systemic

Fatigue

Lack of energy

[sandy4510 in reply to GP24]

yes, his testosterone level is still undetectable and I'm sure that's why he feels so bad. I was just hoping to get some ideas from folks on what makes them feel better.

[GP24 in reply to sandy4510]

I think the estradiol patches you may have taken during menopause will help him a lot. Most side effects can be mitigated by adding estrogen. Use a 0.1 mg patch twice a week.

webmd.com/drugs/2/drug-1708...

[WayneSC in reply to sandy4510]

Strange that after 8 months he is undetectable. I am 18 months past ADT and my T is in the low end of normal.

[Shooter1]

After that Mack truck flattened me yesterday, I took a 3 hr nap. Then up and 1 1/2 mi walk with my 5 yr old grand son that included chasing some wild turkeys around and climbing some steep streets to get the great views of snow covered mountains to the west. My wife said " aren't you about ready for a beer?". Off to the Kootenai brewing company for a nice Porter and to catch my breath....Nice to have great dark beer only a mile from my home...

[sandy4510 in reply to Shooter1]

that beer was your carrot at the end of the road My husband takes naps too... which he never used to do.

[maley2711 in reply to Shooter1]

Canadian???

[Shooter1 in reply to maley2711]

No, 30 miles below the border...North Idaho

[maley2711 in reply to Shooter1]

Kootenais chain of mountains?

[Hidden in reply to Shooter1]

🍻Salud!

[j-o-h-n in reply to Shooter1]

Next time have that beer in the daytime........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/02/2021 5:34 PM EST

[noahware]

If we assume he is still suffering the effects of low T (since it likely is slow to recover) then he is ALSO suffering the effects of low estrogen (since in men it is largely derived from T).

Some of the effects mentioned in GP24's list may be mediated by estrogen, not directly by T. This means that adding back some estrogen, via low-dose patches or gels, may offer some relief.

I frankly think this should be offered to most men, as a regular SOC option, when they undergo the chemical castration of ADT. [And if you look at the "estrogen" post that was posted an hour before yours, it's starting to look like HIGH-dose transdermal estrogen perhaps ought to replace chemical castration as the BEST SOC option for ADT.]

[sandy4510 in reply to noahware]

thanks we have not read up on estrogen. His testosterone , last time we checked, was undetectable

[Tall_Allen]

Talk to his oncologist about hCG and/or clomid to jump start his natural T production. There's no point in a vacation if his T level isn't restored.

[sandy4510]

He is 72 with no heart issues. He had HIFU 4 years ago and we thought it was contained. Then about 2 years ago his PSA got back up to 8, and an Axumin scan detected 3 lymph nodes that were lit up. So he went on Firmagon and also had radiation in the lymph node area. Ever since the first month of Firmagon, his PSA has been undetectable (.01). After 18 months of Firmagon, his dr. suggested we get off of it and monitor the PSA. That's what we've done, and after 8 months the PSA has stayed undetectable. His testosterone is also still undetectable... and I know that's why he feels so bad. To my knowledge his thyroid panel has not been looked at. Do you think we should suggest that?

[ARIES29]

Hello sandy4510. Although i do not understand a great deal about the treatments mentioned here & i can agree with every side effect mentioned by GP24.

To give me a bit of a lift i have L-Arginine when i think of it,1000mg, it gives me a bit of a lift anyway.

[sandy4510]

Thank you! We will definitely explore these options.

[Psychmed]

A couple other side effects are subcutaneous bleeding and dysgusia ( not sure of spelling) (bad taste in the mouth)

[j-o-h-n in reply to Psychmed]

FEI

Common causes of dysgeusia include chemotherapy, asthma treatment with albuterol, and zinc deficiency. Liver disease, hypothyroidism, and rarely certain types of seizures can also lead to dysgeusia. Different drugs could also be responsible for altering taste and resulting in dysgeusia.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/02/2021 5:38 PM EST

[London441]

Sandy,

I’m sorry your husband is struggling.

I stopped Lupron 9/19. I’m getting my T checked every 3 months and am taking HCG and Clomid to try to help the pituitary along. My baseline T at diagnosis was 700. Last month it was 36. I feel less tired but that’s about it so far.

Don’t give up! He’s in a tough spot, but Firmagon being a monthly injection w a half life of about 2 months, some of it is still rattling around in there.

Many men see a big improvement at 6-9 months, it’s still early.

What was his T baseline at diagnosis? I realize you may not know this. T recovery depends on age, biological age, time on Lupron and baseline T.

Don’t give up on the exercise either! it’s a absolute must no matter what his mind is telling him. It will help his T recover. NOTHING is more important.

[EdinBmore]

Many of us know his struggle and misery. Sorry he's going through this. It's awful.

In addition to the exercise (which is really hard to get motivated about methinks), I tried medical marijuana. It comes in all shapes and sizes - from joints (I don't recommend smoking); and small gels; gummies; etc. It's legal in MD and there are a gazillion clinics here. Personally, I liked the small gels. They take about 30-45 mins to kick in and last for hours. It's quite a pleasant mellow meditative high. I took them for several months during the darkest ADT times.

Good luck to both of you. It's hard.

EdinBaltimore

[sandy4510 in reply to EdinBmore]

Thank you have you tried cbd oil?

[EdinBmore in reply to sandy4510]

Yes. Not as potent for me. I liked the tiny gels and gummies more than the cbd,

[MateoBeach]

Yes check testosterone level. It takes on average 13 months to get back into normal range. And for some much longer or never. Estradiol patches can make for feeling much better while on ADT or awaiting T recovery. HCG ( human chorionic gonadotropin) and or Clomiphene can kickstart normal

Testosterone production and is easier to sell to MOs than replacement testosterone.

[MrCatMan]

Taking Lupron shot every month and on my last and sixth Taxotere infusion next week. Usually by third week after infusion I'm at a pretty good level of energy but not this time. Tried a walk and maybe made two blocks. Just beat all the time. I'm hoping that the chemo's cumlative effect will be some of the cause. I'm looking forward to spring and no chemo.

[Hidden in reply to MrCatMan]

Best of luck completing chemo brother ! 💪

[Horse12888]

Given that his T isn't recovering, he's really not on a vacation at all.

I'm not recommending this, but here's my story FWIW:

I quit halfway through my 24-month sentence, because I simply couldn't stand the emotional and physical misery any longer. My T recovered normally, and I started to feel better about 4 months later. Had it not, I would have had exogenous T, regardless of what my MO said about the danger of untreated high-grade PCa (G4+5=9), because I was suicidal and unwilling to live like that.

Again, this is just one man's story.

[Currumpaw]

Hey sandy4510!

I read some of your replies. Your husband has a good heart. If he has good knees maybe "breathing squats and a diet change here and there might help.

I raised my T level substantially by doing breathing squats, high rep back squats. Blood tests three months apart confirmed that my T raised. My oncologist asked if I was taking anything. I said, "Yes, back squats". I have much damage from the fluoroquinolones Cipro and Levaquin it was necessary to use light weight and high reps, at least 20 reps.

Surprisingly, vegans have a tendency to have a higher T level than those who eat animal products.

Learning proper form to prevent injury is most important. Use a bar or even just a broom stick and body weight if that is challenging enough to begin. Deadlifts and overhead presses can be helpful too.

You are eating a mostly plant based diet. Have you added any supplements such as a vegan protein powder such as Sun Warrior's which has all the amino acids? Solgars Brewers Yeast is another vegan option from which to obtain the amino acids.

I make a blended drink using seeds, nuts, blueberries and dark cherries as some of the ingredients along with some of both the powders above.

Regaining a normal testosterone level is important for physical energy and mental health and optimism. The problem is, is that when T is low it is hard to begin.

Currumpaw

[sandy4510 in reply to Currumpaw]

Thank you for the suggestions!

[RonnyBaby]

Firmagon, at least in terms of what it does to your 'hormonal system / balance takes time to recover, based on several factors such as age, duration, and how low (T) you are starting from.

The half life is stated as 53 days in literature I read - based on a 30 day 'shot'. The remaining HALF takes a reaction time similar to 'decaying' half lifes'. It is almost a 2 to 1 ratio.

It is not an 'on off switch' in what it does to your body. Hopefully, in due time, he'll feel much better as the effects wear off and his T rebalances in 'sync' with what more 'normal' looked like/ felt in the past.

Some men might never recover to full normal, but that is not typical - assuming there aren't underlying factors or conditions that could complicate things.

I didn't see an explanation as to why he is taking time OFF - so I won't add anything further.