Fatigue getting worse over time

[daysbetween]

Hi All, want to poll some folks on how there side effects impact them over time. I am a G10 diagnosed in 12/2017. Been through beam radiation, ldr brachy and 2 years of lupron. After a 2 year break and my PSA rising, I restarted on Lupron and Albiterone and have been taking for additional 3 years. I've been working since diagnosis, but I feel like the last 6 months have been much more impactful on fatigue and brain fog. Was wondering if others have experienced hitting a wall on side effects ? I suddenly find my self reading up on disability and am concerned I may not be able to work as long as I had hoped.

[j-o-h-n]

It eventually takes over. Many members suggest that exercise helps quite a bit... You should stick it out until you reach S.S. Medicare qualification age.

Good Luck, Good Health and Good Humor.

j-o-h-n

[3putt]

I experienced much the same. I’m now 2 months into a break from all meds and can’t believe how great I feel. Guessing after almost 8 years I totally forgot what normal feels like. I ended up taking an early retirement as I was always too tired to give a damn most days. The as now I spend as much time as I can staying active. Makes the journey much better. Good luck!

[Lettuce231]

You have been through a lot and I admire you for the fact you have somehow continued to work through all of this.

Fatigue and brain fog are a worry, we have to confront that, when we said goodbye to our old selves and are now this version, the things we had before to carry us through aren't there any more.

I've been on Lupron from day one, I was 56 years old at diagnosis, I'm now in my 69th year. Without doubt due to this medication, we lose our physical strength, despite our best efforts not too, we tire much quicker and recovery time takes longer. I walk and continue much as before, but I've lost muscle and stamina, I was splitting wood this morning and the axe weighs twice as much as it used too. Yes I do feel more fatigue than I did, it annoys me.

The brain fog is another issue, when women go through the menopause, they often experience it, but they come out the other side, we won't. The last time I saw my Onc, I also had a dementia test, like you I'm concerned that thinking and completing a task is getting harder. I came through it okay, but we arranged another meeting after 6 months, if I can remember were to go. I find stress makes it worse.

Try not to put the cart before the horse, you are actually doing very well, also try not to stress, it will make matters worse, after all we're still here and that's the point of the exercise.

I wish you well.

[daysbetween in reply to Lettuce231]

Thank you for your kind words. You make a great point about recovery time. I recently contracted norovirus and I read online it was 1-3 days to resolve. I felt like crap for a week. Part of my job concern is I am in a leadership position in computer architecture and the complexity of tasks have gotten harder and harder to work through. There are things like certifications on different technologies that are now off the board given my ability to absorb and recall training sessions. Thanks again for your reminder about not stressing and staying positive....that is the only way I have made it this far !

[Lettuce231 in reply to daysbetween]

Welcome.

Norovirus, 1 to 3 day's to recover, that would be amazing for most people. Last year, my wife and I had Covid, it has taken a long time to recover.

You have a complex job, absorbing information becomes extremely difficult, I live in Europe and am now having trouble recalling my native language, I can see the expressions on peoples faces when I stumble over the language of their country and automatically think that I haven't bothered to learn it. The truth is I once could, I worked here before this happened. Now I can forget a word as soon as I've heard it.

One question what frequency do have your Lupron jabs ? I was on 6 monthly to begin with and it wiped me, I switched to 3 monthly, a much better result, I think you can have them monthly. Just a thought.

[daysbetween in reply to Lettuce231]

My most recent injection was 6 mo, however I have been receiving 3 mo injections for the prior 3 years. I just received the 6 mo earlier this month, so probably to early to tell, but I will be diligent in determining if my body experiences it differently. The reason I went back to 6 mo was that was what I received in my first 2 years of treatment, and I want to see if there was a cost benefit to doing 6 mo.

[nitefly70 in reply to Lettuce231]

well said

[Chadsdad]

I’m gonna agree with the other 2 comments. I think over time the SE’s become cumulative. After 8 years I can feel myself needing more nap time, takes longer to do small projects, thinking process is slower and body continues to deteriorate before my eyes. I have also turned 69 and not sure how much of this is age related. I exercise, stay active and eat healthy as a guy from the south can. Maintaining a 0 PSA and a <10 T level keeps me going.

[daysbetween in reply to Chadsdad]

Thanks for your feedback, I think you have accurately captured my current situation.

[Lettuce231 in reply to Chadsdad]

Hi, Your description is right up there, everything you have said is correct.

Age related is such a difficult question to answer, because we just don't know what we would have been like at this age, had we been able to continue as normal. If for example you compare yourself to other men without this malady, how do you stand ? Often people say I look good for my age and didn't think I am this age ( I pay them ). Some people think I've been cured, unfortunately I didn't get to touch the robe.

I guess we all have good days and bad days, but as long as we stay positive and fight the beast, we are still in the race.

I wish you well, keep going.

[SteveTheJ]

Ask your doctor about Provigil. I have taken it for about 3 of the 5 years of my ADT so far and it helps a lot with fatigue and brain fog. Every single day without fail it happens, there's nothing you can do to avoid it, but Provigil helps.

[Carlosbach]

I was diagnosed in Sept 2020 at 64 and started on 3mo Lupron jabs (along with Zytiga) in late October of that year. My fatigue and brain fog were debilitating. Exercise helped my fatigue, but did not help as much with the mental SE's. I I eventually was switched to monthly Firmagon (Degarelix) implants and the fatigue and brain fog lessened.

After my son passed unexpectedly (43 years old) my GP put me on the 75mg of Effexor (venlafaxine). The Effexor helped with my brain fog immediately. Since then he has increased the doseage to 150mg and I feel better mentally than I have for years.

That being said, I struggle doing complex mental tasks and calculations that were once second nature. Also, my ability to concentrate has improved, but I can no longer maintain an intense focus for more than a couple of hours. One thing I have found is that when I push myself mentally or physically, my recovery time increases exponentially over what it was 4 years ago.

Side note, I have also tried several alternative treatments (ginseng, acupuncture, ice bathing, etc.) without noticing any long-term benefits.

Best of luck

[32Percenter]

I found after about 18 months on Zoladex + Nubeqa I hit a brutal wall. It came on very suddenly, and I'd felt mostly fine until then.

After that moment, it became really tough to sleep. I'd get up after 4 hours to pee and could never get back to sleep. You'd think this would make me tired and I'd sleep like a log the following night, but no it just compounded and my waking hours were hell. Emotionally things were very tough, between low hormones and sleep deprivation.

I've seen a similar sequence after neutering my 2 male dogs. Each time they were neutered and recovered they were still little destructive and aggressive punks for months! Around the 6 month mark though, in a very short time they became very docile and slept a lot. I think a similar thing happens to us with chemical castration, and you may be feeling that.

Someone recommended trying Provigil (Modafinil) for energy levels, and I can vouch for this. Just keep in mind that the stuff is pretty much legal speed, and should be used occasionally when you have a high-stakes day at work or something. Think putting a Ferrari engine in a Honda Civic, not good over the long run at all! I manage to get by at work with strategic timing of caffeine, with very occasional use of Moda.

[jfoesq]

I have been on ADT for more than 12 years and am now age 66. do feel lethargic from treatment but am unable to tell if my lethargy has gotten worse.The same is true for my memory and attention to details. I also thought I was having some memory issues but was tested by a neuro a few yrs ago who found that I scored pretty high on his tests (of course, since there was no baseline- who knows if I would’ve scored even higher without ADT. In general, despite those tests I do believe my attention to detail, especially when reading, and registering for flights and hotels, has suffered- I have made mistakes more that once with them. One last thing- I think there are posts from several yrs ago about obtaining disability social security because of metastatic PC. I may be mistaken, but it my (faulty) memory tells me that those posts indicated all that was required to qualify was to have metPC (and of course 30 yrs of a work history... ) You may wish to look into this further.

[daysbetween in reply to jfoesq]

You are right, I do believe I could get SSA disability, but my preference would be to go on my company plan first which pays much better

[Derf4223]

IMO ADT and PCa treatment accelerate aging. But another factor in the fatigue/fog situation is that it is only human for us to be to a varying extent continuously distracted by the PCa swords hanging over our heads.