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Lupron half life/ ED

Chasu profile image
13 Replies

I've recently completed 44 radiation treatments for pc. They gave me 2 injections. Now my psa is undetectable but I have severe ed and typical shrinkage my question is how long is the lupron going to affect me and will I come "back" as it were. I bought some dhea with horn goat weed and yohimbe. Will that jeopardize my recovery?

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Chasu profile image
Chasu
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Tall_Allen profile image
Tall_Allen

Testosterone usually recovers in 6 months to a year.

Chasu profile image
Chasu in reply toTall_Allen

Thankyou sir! I got on the site you suggested.

doc1947g profile image
doc1947g in reply toChasu

73 y.o. with Lymphoma NH Marginal Zone and many Acute Chronic Diseases.

That gave me a Severe Physical Limitation. 2 walks of 0.75 km with a walker, then my Pulmonary Emphesyma Gold Grade 3 kick in and I have to rest and catch my breath.

1994 Had a work accident followed by Discoidectomy L4-L5 and Permanent Acute Lumbalgy, on Fentanyl 87 mcg/hr patches and recently on CBD and THC.

2004 Chronic Renal Insufficency Grade 3.

My PSA went from 6.76µg/L to 22.4µg/L in 6 weeks.

Prostate went from 24.7cc to 45.86cc.

I had 6 cores out of 12 positive on the right side at 85% G4, then on a Special pre-RT Scan they found multiple tumors on both sides.

I am in the Ufavorable Intermediate Risk group with a G(4+3=7) Grade 3.

I got an injection of Eligard 45mg/24weeks on April 4th 2020 that was screw-up. And Casodex 50mg X 30 days.

So I have been on Lupron Depot 22.5mg/12weeks X 2 from May 31st 2020 and Aug 24th 2020 to Nov 16th 2020 and on

VMAT-RT 3Gy X 20Fx from June 8th 2020 to July 7th 2020 and my

PSA = 0.01µg/L and my

Testosterone = 0.4nmol/L or 0..1154µg/L.

2020/10/01 Pulmonary Emphesyma Gold Grade 3.

2020/11/30 Severe Depression on Sertraline 200 mg and R/V with special psychologist for patient with 2 cancers and multiple Chonic Health Problems.

As of today (almost 6 months Post-ADT),

I still have NO Libido,

my penis & testicules have shrink,

And have Terrible Heat Flashes.

👍

I bought some sublingual dhea and used it a few times and my psa shot up so now I am having new MRIs and scans. Could be a coincidence and I have recurrence anyway. And I still have prostate tissue. But, from my clinical trial of one, I would not recommend it.

EdinBmore profile image
EdinBmore

Re Lupron. Depends upon duration of dosage. 3 mos, 6 mos, more?

I was told that T would rebound and I'd start to feel better after the duration of the injection was over. Mine was a 3 mo duration. It took a full 18 mos before I felt anywhere near pre-treatment "normal." And, my T still has not recovered to pre-treatment level. It's a roaring 183. LOL

Hate to paint a bleak picture but my experience with Lupron was awful. Almost every side effect that's listed. Some men here have few complaints but it seems that they are in the minority. Hope you're one of the lucky ones.

And, if you mean when will you regain sexual functioning ("when will I 'come' back"), you might want to have serious chat with your doc. Ask about genital shrinkage. Ask about libido. Ask about change in body wt, muscle mass, mood swings, depression, and so on. Consider a penis pump to try to maintain size of your penis. Exercise like there's no tomorrow. Get a clear pix of what may lie ahead and ask what you can do to mitigate the side effects. Suggest "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones."

Good luck to you,

EdinBaltimore

Chasu profile image
Chasu in reply toEdinBmore

Hello and thanks. I had 6mos (2 injections) last one was 4 months ago. Everything you said is now happening to me. It didn't "set in" until about a month ago. I was doing g pretty good but Firstly. Anorgasm. Then shrinkage. ED,Hot flashes depression weight gain etc. I am exercising and got a pump but that hasn't worked as yet. Viagra used to work but no more I fear. Any, I'm also having nightmares, insomnia. If it took 18 mos to recover for you. I think I'd be lucky to have that after twice the dosage. Hope all is well now for you.

Chasu

EdinBmore profile image
EdinBmore in reply toChasu

It's brutal. I am so sorry you're going through this. I really struggled with the depression and did not understand what I was feeling. In time, I realized that it was grief; loss; despair. The loss of feeling "like a man." The loss of being able to get an erection easily. The loss of being able to ejaculate. The shrinkage/atrophy of penis and testicles (some men here report that their testicles shrank to the size of small grapes or even to the size of raisins). Combine these changes with rapid wt gain, muscle turning to mush, hot flashes, insomnia, joint pain, mood swings (sudden crying spells)...a real recipe for a feeling of loss and grief. AND, the doctors said little about this (I felt very much alone...what was wrong with ME?), they offered little more than, "it'll pass," or a "it's just part of ADT."

The only thing that seemed to help at all was exercise. 5 days a wk. Personal trainer. High impact. Treadmill and elliptical. I did not see any real changes in my body (other than getting heavier) but, at least, I felt that I was doing SOMETHING! It made me feel more "in control." I hope this makes sense.

Good luck to you. It's a long journey. You WILL get through this but you are a changed man. You'll find great support here and others will offer their thoughts on what worked for them.

EdinBaltimore

Chasu profile image
Chasu in reply toEdinBmore

Thankyou so much! I was quite uninformed by Drs as well. Im getting much more help here psychologically than from oncology. If I only would have known. I may have elected for surgery. I am doing pilates daily and recumbent exercise bike. Pump stretching .I have viagra but don't suppose that will work at this point. Luckily I have an sympathetic woman in my life. Thanks again, chasu

EdinBmore profile image
EdinBmore in reply toChasu

Just one more comment. Don't second guess yourself re radiation vs. surgery. Clearly, pros and cons to each form of treatment. Even though I had a very difficult time with ADT, radiation and ADT were the better choice for me. There are significant and long term side effects to surgery that simply were not something I wanted to do.

Hang in there. Glad you've got some good support from your wife.

EdinBaltimore

Will60 profile image
Will60

Hi Chasu, I didnt do well on ADT at all. I was on Zoladex for 7 months and experienced all that you and EdinBmore described See my post on ADT for more information). What really helped me with ED was a 5mg daily dosage of Tadalafil. You may not believe it at the moment, but things do get better.

Think I was in meltdown when I found this site and it was a great help and got me through some really bad times.

Regards,

Will.

Jimhoy profile image
Jimhoy

My story mirrors Ed & Will. I found this site well into my treatment and all things bad had already been going on for a while. It also really hit me hard between my ears!! One day in a moment of clarity, while sitting in my Urologist’s office, I pointed to the picture of the guy sawn in half on his wall and told him “I want to look like him again”. He sent me to a Mens Health” specialist. Once there, I was prescribed the pump and low dose Viagra. I still don’t know if my SEVERE cognitive decline was in play at the time but I just couldn’t wrap my head around doing this!!! Couldn’t relate to a device sold with dildos and magazines for a medicinal use. But I also couldn’t even bring myself to let my wife of 44 years see me naked! It was fu$&ing torture!!! One doesn’t realize how much is relying on your masculinity and male ego until you loose it! With the 100 other side effects, I didn’t think I could get any lower but I was still spiraling downward. Now depressed, reclusive, anxiety..... and taking my wife down with me!!! Fu$&ing pride!!!!! To make a short story long, Use it or loose it.... is real. Atrophy can be permanent! I had a late start, but once off the Eligard for QoL vacation and a lot of side effects went away, I began working on getting that turtles head out and even though not fully functional, sexually, at least its looking normal..... WELL over a year after I began penile rehabilitation .

This is what I learned and do:

*As stated, treated by a mens health specialist.

*I take a 20mg Viagra (generic) ever night. YOU HAVE TO SUPPORT NOCTURNAL ERECTIONS.... THAT IS KEY!!!! A normal man has numerous every night and keep fresh blood circulating in you penis. I buy them at a compounding lab for about .60c each.

*The pump does this as well to a much lesser extent. I pump 3 times a week skipping a day or so between. Nobody gives you instructions other than damage can result from over pumping so I limit this on my own. Someone may comment otherwise...but, not yet!!!! Right or wrong, I pump it up, hold 10min’s, relax. Repeat for an hour! Thinking I’m getting fresh blood every time!

*I take Nitrous Oxide and L Arginine supplements daily as well. These are also helpful for exercise..... Segway ing into the next...

*Exercise and reduce fat. Totally unaware of what to expect with ADT, I succumbed to the couch because of the massive amount of side effects (beyond the 2 that I was informed of by Dr’s (some listed by Ed)) and gained about 70#’s of pure fat. Some of that is pelvic fat which gives an illusion of further shrinkage.

Sorry for the partial rant but hope you find some guidance within. It a long freaking road but one worth traveling! We’ll never be the men we were but I’ll settle for a reasonable facsimile!!!

Good luck brother!

Jc

Chasu profile image
Chasu in reply toJimhoy

Jc.thank you so much for your lengthy reply! I am overwhelmed by the generosity here. Yes I have a pump and it's working for stretching and blood but certainly not a quality erection.I actually still get a nocturnal erection but not every night so, I'm not sure if I'm on a downward trajectory but from what I've heard here, I probably am. It's hard to accept this shrinkage and lack of ability and energy. I have cialis here and viagra as well I'm going to start daily dosing. I'm doing pilates almost every day and have been for a while. I could have opted out of

adt and just did radiation as I had a 3+4 gleason but was encouraged to do it by oncology. I know it's not good to second guess here but I sure wish I would have known all this info at the outset of treatment. From your testimony, I better prepare for a long haul. Thanks you for your advice and hang in there my brother!

chasu

Jimhoy profile image
Jimhoy in reply toChasu

I digress.... I did not address your post but some of the comments instead!!Regarding the half-life if you will, My last 3mo Eligard (Lupron equal) was in Nov 2019. 7mos later (June) I was still full blown ADT with T 19 & PSA <0.1. Then at 9mos (Aug) T was 100 & PSA 0.1 and some side effects were visibly diminishing!! Mens Health suggested T (testosterone) therapy... (actually they were pushing for),. but I fought them off for fear of that waking the beast!! I decided to let mother nature handle it and just give it time!! It naturally raised steadily matched by slight increases in PSA. so that reinforced that I made a good decision NOT to supercharge the T rebound. Not sure that OtC DHEA products would have an adverse effect but I prefer to let the beast sleep!!!! 18mos out of ADT I ended up with T @ 425 & PSA 0.4. Same at 27mo (now) so I assume this is my new normal. I have no idea what it was pre ADT... but assuming it was this.

Likely not what you wanted to hear but it seams that its taking as long to get it back as it did to take it. I was 20mo ADT & 44 EBRT too. I have no regrets choosing RT over RP and myself too, (if I had known), maybe avoided the Eligard which haunts me to date. You know that “if’s and buts were candy and nuts we’d all have a merry Christmas”!!!

Jc

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