Post Lupron Experience

Hello brothers and an early Happy Holidays to you all. I have recently completed my Lupron journey. There has been other posts about this milestone but I'd like to start a new one for the most up to date experiences. I have heard:

* Hot flashes continue for 6-12 months? True?
* ED... same deal?
* What about weight gain? Do you lose weight (easier) post Lupron?
* How about fatigue?

Those are the main concerns. I don't really care about body hair... I should have shaved my arm pits and chest hair 40 years ago. Nice and streamlined... need some humor. I'll hang up now and listen for your responses.

All the best to everyone.

Having mine removed on Jan 15th. Already implanted with 22 cm. Titan Coloplast that I am thrilled with Radiologists wanted me on Lupron for 12-24 months. I am choosing surgery to probably avoid that but also because I have a back up with radiation. Also, I have radiation and Lupron as a back up.

Any reports on Lupron would be appreciated. Thanks,

My final six month shot was last January and my next T level and PSA check will be in about six weeks from now. Hot flashes have subsided a bit but still occur. Still no chest hair, but I don't miss it at all... would prefer to just stay like this anyway.

This puts me at almost two years since my first Lupron shot. What I've heard is it has a six month half life, so whatever Lupron is still in my system should be about half of what it was in July when I was officially released. I will know more after my next blood work in January, but as has been noted both age and duration of HT would make recovery take even longer.

So I figure I won't know my "true" PSA until perhaps early 2020, or another year from now. I have no idea what my baseline T level should be as no one ever bothered to test it before starting me on Lupron (Note: no one in the medical profession ever tells me anything).

Regarding fatigue, I just had another major surgery a month ago, when lost 10% of my bowel and was on IV nutrition - no food or drink - for nearly a week. So no surprise that I still tire easily. Life "with" or "after" Lupron has pretty much become the new normal. If matters improve, which I'm hoping they will, then so much the better. Will know more after my next Uro visit in January.

Break 60:
I consider myself to be a young 67 who has three treatment options in front of him. Note that I am engaged to be married to a 53-year-old woman who I have dated for four years. She is very supportive but I know that she is got to be a little afraid of the unknown.
I was implanted with a Titan Coloplast penile implant in 2013 which has worked like a charm. My implant doctor is across the hall from my urological oncologist and has told me that surgery will not affect the implant as it will not get into the way.
The option that I was enthralled with was proton beam radiation. One of the leading experts in the field has a clinic in Irving Texas. My problem was that he wanted me on two years worth of Lupron.
The University of Texas Southwestern medical school radiation oncologist had just come from Mayo Clinic where they are doing a different type of radiation whereby they insert leads into your prostate and hit it with a boost of radiation. You wait for a month and then start five weeks worth of daily radiation. Unfortunately this radiologist wanted me on one year worth of Lupron.
The surgeon at University of Texas's Southwestern medical school did his fellowship at Sloan-Kettering and is highly regarded. I ask him what my survivability would be for 15 years if I had them take it out and he replied 99%. He said that as a backup we have radiation and as a backup to that we have hormone therapy.
The problem with radiation, besides the hormone therapy, is that once it is radiated, the prospects of surgical removal if it comes back are dim. In a nutshell, once radiated you have shot your wad so to speak. No pun intended
As a result I have a January 15 surgery date which is quickly approaching. With my implant, I don't have any risk of erection problems the only difference is I will not have ejaculation. I feel pretty sure my fiancé doesn't care about the ejaculate other than it will make the encounters cleaner LOL. If anyone has thoughts or can put punch holes in my concept I'd love to hear him.
.

Bob, I had a Gleeson of 7 and did an In Bore MRI guided biopsy with nine samples all positive five were 4+3 and four were 3+4. So no, I'm not at low risk and was told that I should do something. I'm choosing surgery for a couple reasons, the primary one is that if the cancer returns, I have radiation as a backup. I'm told it that is about a 30% chance that I will have to do that and or hormone therapy. I am at the University of Texas Southwestern medical school with an assistant professor that dis his fellowship at Sloan Kettering. I believe that I'm in good hands but him quite anxious about the surgery.
I have a clear bone scan and a clear colonoscopy as of a couple of weeks ago. My surgery is scheduled for January 15. I had Peyrrone's and in 2013 I had a Titan Coloplast penile implant surgically inserted and I could not be happier with it. It is so easy to use and realistic and is very thick and stiff. As such a, I don't have to worry about erection problems just incontinence.

RedWing,
Thank you for your detailed response and attached chronological story. Your numbers are nearly identical. I'm just a few years older but still considered young in the fight. I see Dr. Maha tomorrow. It will be interesting to see where I'm at. Keep the faith.

Many Thanks

Carl,
I just had a follow up visit today. My PSA is still undetectable. 0.0
My T is another issue. I’m still under 20. It’s clearer now where the fatigue is coming from.

Thanks for your response.

Naples,
Glad to see another "0". That is great!
I am just about to get my 1 yr PSA and T test next week. You mentioned the fatigue. I still feel fatigued every day. My T has risen from 14 to 64 through the past 4 tests and my PSA has gone from <0.01 to 0.04.

I too am figuring out that low T is the source of my fatigue. I really wish it would improve.....it's just taking it's sweet time getting there. I wonder if the low T is keeping my PSA down. My main concern is (like everyone)….as my T recovers, where will the PSA settle. That's just the waiting game we are in now. By the way I have very little body hair and libido is still very low 1 yr post ADT release. ( last 4 month Lupron Aug 2017) I gained about 30lbs during treatment and have yet been unable to loose that. I will say that my energy level has improved but considering I felt almost dead after RT,Chemo and ADT , there is progress. (Very slow progress).

Here's to looking for improved #'s !!


Battle On Brothers!


Mark

The SEs I am experiencing are:
hot flashes - steady
joint pain (hips, back, knees, shoulders)- getting worse with time
insomnia - steady
fatigue - got better after radiation was completed but now getting slightly worse
sex drive - none (very unlike me)

DX 5/2018 at 55 years of age (56 now).
G8 4+4. 10/12, G7 4+3 1/12, No Cancer 1/12.
Lupron 6 mos (of 2 yr treatment)
Radiation (EBRT) 40 sessions completed 8/30/2018.
PSA 5.2 5/2018
PSA 0.0 10/2018

oldbeek said...
My dad was in ADT when I was younger. He lost all desire to get out and hunt with the bird dogs. Hunting and dogs were his life and are my life. I am a grouch now without joint pain, hot flashes and lack of energy that Lupron would bring on. Don't think I would be fun to be around if I had all them SEs. Did I mention I really like sex. really get grumpy without that. Going to evade ADT till the end.

with ADT you lose interest in sex. it's not like you wish you could have sex but you're physically incapable. you don't care. indifferent. freeing in some ways.

trailguy said...
ADT stops the production of all of the chems produced by both the hypothalamus and the pituitary

Interesting

F8 said...
you don't care. indifferent. freeing in some ways.

Yup

MG0351 said...
I'm early in my journey, I get my 2nd Eligard 6 month injection in Feb....
Se's....Hot flashes, Fatigue, No desire to do anything... Oh the joy's of HT, It keeps on giving....LOL

Same for me.
The hot flashes were moderately annoying, not a big deal. Megace reduced them a lot.

Fatigue was rough. Relentless, grinding, bone-weary fatigue. I could fall asleep anytime by just not trying to stay awake! This was probably the most debilitating side effect. Driving was a problem; 45 minutes or so was all I could handle before my wife had to take over while I napped.

No desire... yeah, that's a tough one. They talk about loss of libido, interest in sex. This bigger, this is the loss of interest in everything. Literally nothing is interesting, you look forward to nothing, you're not excited about anything. It's also one of the symptoms of depression, which may be part of the deal. But I think this is different, this may be a direct side-effect of the hormone therapy. Wait until you see the disappointment, the longing for more, in the eyes of your spouse, as she tries to get you interested in doing, well, anything. You'll go along with it to please her, but in reality you don't care, and you don't really want to do anything whatsoever. I don't know just how common this one is, but it's a difficult part of the emotional ride.

The hypothalamus is on top of and intimately connected with the pituitary gland. The hypothalamus controls what and how much the pituitary gland produces. It acts like a moderating link between your nervous system and all of your other organs. On a regular basis, it releases a small, precise amount of a particular chemical that turns on a bunch of organs, including the sex glands. Those then make sex hormones like testosterone. As this is done, it uses up that original chemical. When the hypothalamus senses the lowered levels, it releases some more. When the chemical levels are low, the functions they control go low as well, like lower sex hormones produced.

Luprolides are chemicals that engage and saturate receptors in the hypothalamus continuously and completely. The intent is to stop all production of sex hormones for long periods of time in order to slow the progression of hormone sensitive cancers. They work well at that. That is not all they do, however. A look at the side effects listed by the manufacturers and an understanding of the limited role that sex hormones play in those
side effects show how they work by 'jamming' the hypothalamus and thus the pituitary.

6 years ago, when I started Firmagon, then Lupron, then Eligard, I researched this and connected the dots. I then requested intermittent measuring of my pituitary hormones along with my testosterone and PSA levels. They all crashed while I was on the chems. They all came back up into normal ranges as the chems wore off.

Well, excepting for my testosterone due to the demise of 1 testicle.

Google:
"Lupron® is an “antineoplastic agent”, meaning that it is a cancer chemotherapy drug. Like all antineoplastics, Lupron® is harmful to both cancerous and non-cancerous cells — particularly to pregnant women and developing fetuses. ... The popular website, Drugs.com, states flatly: “Lupron causes birth defects."

Not saying not to take the stuff though, as it does help the fight. It helps to understand why things are happening to me so I can deal better with them. I will be back on the chems pretty soon here myself, as I like to be alive.