Is anyone having extreme fatigue and extreme nighttime urination on Lupron (sleeping 10 mins in between urination)

Father diagnosed 6 weeks ago with stage IV prostate cancer, mets to spine and hip. Muscle loss in arms and legs, hard to walk, up only to eat a little at breakfast, back to bed until dinnertime. Treated at Kaiser.

[LearnAll]

Yes,,,I had significant tiredness and felt like lying in bed all day ..in first month of Lupron injection.

Then, I found out from some members on this forum that increased physical activity and green tea 3 times a day reduced tiredness to less than half.

I started walking a lot (total 4 to 5 miles a day) and started drinking green tea 3 times a day.. Within 3 weeks my tiredness was half than what it was before.

Now after 4 months on regular 4 to 5 miles (small walks many times a day.. not all at once)

and green tea...I hardly have any tiredness.

In first 3 months of Lupron, urination frequency was 5 to 8 times a night and it has gone down to 3 to 4 times a night now.

[Hidden in reply to LearnAll]

Incredibly encouraging. Thank you.

[Jimhoy]

His age might make a big deference in my comments, but....

I can tell you that I went from a 62yo going on 40, to a 62yo going on 82 since on Eligard / ADT. And yes, fatigue is a MAJOR factor. I have been preaching on this site that I didn’t know any better and just succumbed to the couch (you won’t be able to say the same thing)!!! DON’t DO THAT!!!! He will regret it!!! Get up, exercise if you can, move around, go for short walks, do little projects..... whatever he can do, but, get up and move!!! Exercise your mind and faith as well!!! Best of luck and success!!

Jc

[Hidden in reply to Jimhoy]

I will get him this message ASAP!

[tallguy2 in reply to Jimhoy]

Amen! Exercise (walking, swimming, etc.) is key!

[Hidden in reply to Jimhoy]

Hey that’s my line? I went from 53 to 83 over night. Almost five years later I sometime feel like I’m 99. Today I’m hovering at 77 ..

[Jimhoy in reply to Hidden]

That’s funny, I wish I never needed it, but .........!!! And for future reference, I also use;

• rode hard and put away wet

• dumb as a stump

• written by Steven King

• next time I get PCa, it’ll be different

• I can’t remember any more (thats the truth, not a line!!)!

Jc

[Hidden in reply to Jimhoy]

😂

[Tall_Allen]

The urination may be a result of the cancer - he should ask a urologist about it. Fatigue may be due to the cancer too, but is a known side effect of the Lupron. Has he discussed any further therapies (e.g., docetaxel or Zytiga)?

[Hidden in reply to Tall_Allen]

Thank you TA. The excessive fatigue and urination (25 times/night) shot up with the casodex and then the Lupron. The med team has deduced this is prostate cancer based on the initial PSA which was immeasurable but over 1000. Treatment started August 31, two weeks ago the PSA measured at 214. No urologist has weighed in. We appreciate the feedback.

[j-o-h-n]

Give us more info about your Dad... age, location, psa and gleason scores, doctor's name(s). All info voluntary but helps us help him and helps us too. Thanks.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 7:51 PM DST

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

Thank you j-o-h-n! My Dad is 87- formerly vibrant, even with painful hip and back he took down trees in the yard, mowed and trimmed every week and still worked part-time as a minister. Married 61 years and has two daughters, each of which is living with part time to help mom with his care. (We are stunned and overwhelmed). He lives in south Orange County, CA. Had been experiencing hip and back pain for nearly a year and, until he fell and was urged to go to the hospital by friends. Prior to the fall 8/29/19 was told only that he had mild arthritis. Has had nighttime urination urgency, up 6-8 times per night for years, which now looks good compared to the 25+ times per night now. He had lost about 20 lbs between March and the end of August. He went to the hospital Aug 29-Sept 1 of this year and came out with the dx. PSA not measurable but over 1000, we were told. No gleason score given-no biopsy, doctors say this is prostate ca based on PSA and scans alone. Kaiser oncologist is Edward Nepomuceno. Last Thurs was first follow up after hospitalization (with the exception of 5 rounds of radiation to hip, 5 to spine to keep a tumor from interfering with spinal cord). We told the MD about excessive urination and extreme fatigue. He stopped the casodex and is weaning my Dad off steroids. He will be off steroid by next Monday. First Lupron and Zometa were given 9/17/19. What else would you like to know?

[tom67inMA in reply to Hidden]

I was diagnosed before the biopsy results were in based on PSA and CT scan. Biopsy confirmed cancer. With super high PSA there aren't really any other causes besides metastatic cancer.

My kidneys seem to kick in at bedtime, and I think it's the steroids because it's several bladder fulls in the first couple hours, and then I go hours between trips by morning. Not sure but it does seem to be improving with time. Last Saturday I slept about 10 hours and only got up once. It was awesome!

[Hidden in reply to tom67inMA]

My Dad will love hearing that. Are you on Lupron too? How long, and how long have you been on steroids and why? Since my Dad is tapering off the steroids, maybe there's hope for relief soon?? Congrats on the 10-hour rest! That must have been amazing!!

[tom67inMA in reply to Hidden]

I'm on Lupron and Abiraterone. Since Abiraterone also suppresses cortisol production, Prednisone is prescribed as a replacement.

To add to John's comments about profiles, you can see a summary of my history by clicking on my user name, then clicking "read more" at the end of the brief text at the top.

[Hidden in reply to tom67inMA]

I was just there!! You sound great and, after seeing the condition my father is in with the Lupron, I'm blown away at all you can do. Hey, are you in MAssachusetts?

[tom67inMA in reply to Hidden]

Yes! Out in the boonies not too far from Nashua NH.

[tom67inMA in reply to Hidden]

Also, thanks! I have the advantages of relative youth and being in shape prior to diagnosis. Exercise definitely helps with the fatigue. Anything he can do will help, and I'll speculate that would even include just waving his hands in the air while lying in bed. But of course, don't make him miserable if he's not able or willing.

[Hidden in reply to tom67inMA]

That will encourage him. Maybe we can start with waving his fingers.

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

To Callie2018,

Thank you for your informative reply. Make sure he doesn't drink anything before going to bed. Also some of us use a piss jar (bottle) near the bed so it's easier and faster to urinate and to jump right back into bed to get some sleep. Easier and faster than walking to the bathroom and back to bed. Give my regards and kudos to your DAD and MOM for raising two wonderful and caring daughters.

BTW Calliope is a Greek name. = Greek mythology, Calliope is the Muse who presides over eloquence and epic poetry; so called from the ecstatic harmony of her voice.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 10:24 PM DST

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

thank you for being so s-w-e-e-t. Great tips . . . my Dad has to use TWO piss jars!! With his weak hip and weak legs, the bottles are an absolute necessity. If his very loving daughter (me) didn't follow him around with green juices, water, green tea and smoothies all the time, he might have an easier night of it. Will cut off liquid much earlier than we have been doing. Love the background on Calliope!

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

Oops I almost forgot. Maybe you should cut and paste the biography you posted above to your home page.... for others to view.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 10:38 PM DST

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

I didn't even know I had a profile page! I'll do that. Thank you!

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

Just paste it only your "Hi! I’m Callie2018" on the home page

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/16/2019 10:53 PM DST

[Hidden in reply to Hidden]

Mama Mia! 25 times is absurd. How can he sleep? That’s brutal. I bitch about 5-6-7 times per night. I lived in San Clemente for a few years . That’s south OC . I’m sorry that your dad suffers so . At 87 he must be a tuff hombre .. my dad had pc also . He died of unrelated causes . Love your dad .. Make sure that you test from 40yrs old . Pray for mercy for Papa..

[Hidden in reply to Hidden]

Thanks Lulu700. M and D don’t live far from San Clemente. Yes pray for mercy and strength.

[Hidden in reply to Hidden]

Many prayers for your folks. Be the good son.. Much love brother .

[Jbooml in reply to Hidden]

You’re dear father is in his first rounds fighting this daemon...if his progress

[Jbooml in reply to Jbooml]

Oops...continues his signs and symptoms will likely improve. His prostate is a septic swamp that will slowly clean up allowing him relief from his nighttime misery....It’s slow..he’ll notice an improved stream as the vagrant leftovers thin out. He must have some kind of bladder to have been so burdensomed....Lets hope the ADT carries on. Has anyone mentioned zytiga...it’s been an incredible relief for my urinary trials....I can retain 6 Oz now...I measure once a week or so.

[Hidden in reply to Jbooml]

No one has mentioned Zytiga. I’ll bring it up and thank you!

[dbrooks_h in reply to Jbooml]

How much could you retain before.

[LearnAll]

PSA 240....He still has long way to go ...once his PSA comes under 10, most likely the fatigue and urinary frequency will diminish too.

[Hidden in reply to LearnAll]

Really? That is encouraging! His PSA may actually be lower now because that measurement was 3 weeks ago, and only 2 weeks after treatment started. I will let him know right away (will have to wake him up to tell him ☹️).

[larry_dammit]

Didn’t have to go quit that bad but yes to the muscle loss and fatigue. You didn’t say if he was on chemo or not. But the lupron takes his manhood away , you will have to experiment on foods that he wants to eat. How old is he as well. Good luck 🙏🙏🙏

[Hidden in reply to larry_dammit]

No chemo was offered. He is 87 but a super young 87.

[larry_dammit in reply to Hidden]

My dad is about to turn 88 this month. Stage 4. Had him on zxtiga and prednisone. Had to quit the zxiga as he was having lots of issues including fatigue. Still has some lupron in his system don’t figure they will give him another shot. Now it’s about quality of life not quantity. 😢😢😢

[Frigataflyer]

Cannabis (THC) smoked or ingested will dramatically help lower urination frequency. I don’t know about CBD oil but, the reduction of urination frequency is for me the most dramatic effect of marijuana.

[Hidden in reply to Frigataflyer]

Hmm. We have been using CBD without THC for about 5 weeks now. Interesting..maybe the THC component is the missing piece?

[Frigataflyer in reply to Hidden]

As stated above, this is a very dramatic effect.

[Hidden in reply to Hidden]

Correct!

[Hidden in reply to Hidden]

If he takes it well it might lessen his misery .🌵

[Hidden in reply to Frigataflyer]

🤙🏽

[Muffin2019]

Had a little fatigue but exercise really helps, if you sit you rust plus it helps mental state. I decided to keep working part time, gives me mental and physical exposure that helps, been 2 years on lupron.

[Hidden in reply to Muffin2019]

Thank you Muffin2019! My Dad’s fatigue is heavy-duty.

[Hidden in reply to Hidden]

I was 53 I can’t imagine 87? Whoo!

[Hidden in reply to Muffin2019]

Rust never sleeps😂

[EdinBmore]

So sorry your dad and you are going through this. In a word, it SUCKS. The list of possible side effects to Lupron doesn't begin to capture its impact. I think I'm the poster child for them. Lucky me.

As you've read, fatigue is a major side effect. It can be crushing and can rear its ugly head without warning. Likewise, there is often an emotional roller coaster to Lupron. Depression, despair, grief are common.

The only thing that I found of help was exercise. And, it's been a real struggle to force myself to do it. Try to schedule it with your day - walks, light wts, and so on.

Good luck to you. It's a rough road.

EdinBaltimore

[Hidden in reply to EdinBmore]

So helpful EdinBmore. All of this goes straight to my father. He’s got no one else who can relate to him.

[Hidden in reply to Hidden]

We can .

[jimmy1948]

get him walking 10 min at least every other hour

i have had 5 lupron shot past 30 mos.

they were coming evey 6 mos.

no off the shote-the lupron causes you to add 30+ lbs of water to your legs every other month or do

get fursomine pills, about 60 every 3 months to get rid of the water.

once gone walk 20 to30 min at his own pace

[Hidden in reply to jimmy1948]

Well, my sister and mother got my dad out for a walk today. By the time I spoke with him this evening, he was tuckered out, but had walked nearly 1/2 mile, which is amazing. Excellent additional side-effect was that his swollen ankles returned to normal size. Very happy with this, thank you for encouraging exercise. It was hard for me to imagine he could do anything more than walk about 10 steps without having to take a break.

[Hidden in reply to Hidden]

Excellent! He needs the prodding . Get him

Going. That’s love.

[tom67inMA in reply to Hidden]

That's excellent!

[Wdoug]

I have extreme fatigue but no real frequency probs.

[Hidden]

Callie assuming that he is on medication that relaxes smooth muscles, like Flomax. 0.4 mg twice a day (I have been on it continuously since April 2003). The best way to relax his bladder and urethra- smooth muscles - is a Sitz Bath. Sit in a tub of hot water and pee away. Urine in the water will not hurt him.

In 2003 and 2004, I did this 4-5 times a day and always before I went to bed..... even getting up four hours later and repeating. I still do it once a day...... where did I learn this? My Brachytherapy RN.

It brought back the childish ways in summer camp in my youth ..... the old hand in warm water trick of a sleeping bunk mate.......

Last point. When going to a Japanese Onsei, hot water soak, one is required to sit on a little stool prior to entering. The purpose is to wash off body oils and take the hand held sprayer and spray the groin/prostate area to empty one’s bladder.

Allen is right and a cystoscope maybe in order....

Anyway, if he is peeing every ten minutes, the reason is that he is not completely emptying his bladder.

Good luck,

Gourd Dancer

[Hidden in reply to Hidden]

thank you! I'll pass this along to him. He is so weak that we are afraid to get him into their deep tub. We don't know how we would get him in or out . .

[Hidden in reply to Hidden]

😩

[Hidden]

Sorry to hear this. How does he wash? Chair in shower?

If shower, attach a hand held sprayer. Have him relax while someone sprayers his lower abdominal area and groin. Then spray from the rear in the are of the kidneys; then work down. Hopefully he does not have inhibitions. It’s not a time to be concerned for privacy. Relief trumps all.

GD

[Hidden in reply to Hidden]

Surprising he stands in the shower but my mom could help if needed with the procedure you mentioned and thank you.

[Hidden in reply to Hidden]

🙏