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Posted 6/2/2019 9:20 PM (GMT 0)
It’s not what you think, so please don’t answer. But....

Here’s an interesting read on what Hormone Therapy can do to relationships. Something anyone going on HT should be aware of. It’s written by a PhD “sexuality” counselor, and it’s a short and easy read.....

https://www.cancer.net/blog/2017-12/do-you-still-love-me-hormones-prostate-cancer-and-partners
Posted 6/2/2019 10:24 PM (GMT 0)
That’s a good article.

The key theme is a point I’ve made to many men on this forum who may have given up due to the excuse of ADT, but many simply gave up ADT or no ADT. The author’s key theme, don’t give up and make your SO miserable. Be considerate. Start by giving a peck on the cheek...even if it feels a bit forced. But don’t sink so totally inwardly focused that you just give up. Good advice.
Posted 6/3/2019 12:11 AM (GMT 0)
Thanks Prato.. .I have personally been hit by that "I thought they were giving you hormones" thing. What a stupid name for such a devastating treatment, so I tend to call it "hormone depletion". When I mentioned to my MIL that I had lost all my body hair, she said, "shouldn't just the opposite be happening?" Mention HT and people expect some hirsute gorilla.

But I have made it a point to remain affectionate. I found a list of "things girls want" on Facebook and I make it a point to do a few every day. My favorite is to hug my wife, usually from behind and kiss her on the neck. I know it seems simple, but she recognizes this it is spontaneous.

If anyone is interested I'll post the list, but if there is no interest I won't waste the effort.
Posted 6/3/2019 1:24 AM (GMT 0)
gosh your needy...Prato...whats going on?? with that a glad a dew...its all I can stands...I cant stands no more
Posted 6/3/2019 2:08 AM (GMT 0)
"Now there is nothing. No hugs, no kisses, no hand holding, no touch. "

Do you lose your basic human emotion with this stuff? My God, I had no idea.

Can someone expand on this?????? I start this in 2 days.
Posted 6/3/2019 4:49 AM (GMT 0)
yes, I still love you ...
Posted 6/3/2019 4:57 AM (GMT 0)
maybe it's indigestion: https://www.youtube.com/watch?v=osf8l_yh_gy
Posted 6/3/2019 11:32 AM (GMT 0)
This is yet another unfortunate 'side effect' of calling leuprolide chemotherapy "hormone therapy" or "androgen deprivation therapy". I deeply appreciate that the docs want us to undergo this therapy and that it is/can be effective so they pad (misstate or understate) the description to get us to undergo it, 'for our own good'. Simply calling it "hormone therapy" gives the impression that it is relatively benign when it is definitionally not.

Here is a partial list of potential side effects from the manufacturer.

https://www.drugs.com/sfx/lupron-side-effects.html

Please note that the list of potential side effects contributed by the drug manufacturer are intended to meet legal requirements, not to convince folks not to use these drugs. They word these such that it will minimize negative impact on drug sales while meeting those legal requirements.

When you read "testicular shrinkage" you are actually being informed that this drug class may kill your testicles and they may not ever return to normal. 'Vision changes' means that you may not be able to see well enough to get your car to the curb safely if that suddenly hits while you are driving, "Common (1% to 10%): Hypertension, murmur, phlebitis, thrombosis, arrhythmia, angina, myocardial infarction" , "pituitary apoplexy" is a stroke/bleed in your pituitary gland with likely permanent damage.


The frequent nausea attacks at breakfast were lodes of fun. sad Leuprolide chemotherapy is just that - chemotherapy. No, it is not as immediately or blatantly harmful as some other chemotherapies, but it is certainly not a walk in the park or without permanent side effects. Truth in advertising is all I ask, let the docs tell us like it is and don't try to sugar-coat it.
Posted 6/3/2019 1:19 PM (GMT 0)
When my husband started Lupron had I had already researched quite a bit regarding the side effects - especially the loss of interest in many areas. We already had a habit of hugging each other in the morning - more because I often had to sleep in the spare room because of his excessive snoring (which he tended to ignore but that's another story).

I told him that no matter what, he was not allowed to stop giving me a hug in the morning. And 2.5 years later he hasn't, although sometimes I have to reach out and remind him, Some days, though, he pushes me away because he's more interested in making the bed, or the pressure of his hug is so light that it barely qualifies but I'm guessing he doesn't remember what it was like to WANT to hold me or give me a passionate hug. Sometimes I cry on my way to work or at night when he is sleeping on the couch. But he has always been my best friend and I'm grateful to still have that connection and thank goodness he still retains his passion for music (which we both share).

Once or twice a year I get semi-passionate kiss and my heart aches for what has been lost. But the trade off is that his PSA remains at .01 and he still works full time and has only minor aches and pains. It could be much, much worse.
Posted 6/3/2019 1:23 PM (GMT 0)
Thanks Prato for that great link! I think every RO should distribute that article to their patients when they start ADT.
I remember well the conversation you and I had this winter about the same topic. It is very hard to describe just what the drug does to your sexual psyche! Fortunately for me my wife of 46+ years is a very understanding woman.
Posted 6/3/2019 1:39 PM (GMT 0)
“It could be much, much worse.”

I think for those of us using ADT palliatively it’s helpful to remember that if it wasn’t an available treatment we would surely be wishing something was available.

I try to keep that thought in my front brain compartment.
Posted 6/3/2019 10:40 PM (GMT 0)

logoslidat said...
gosh your needy...Prato...whats going on?? with that a glad a dew...its all I can stands...I cant stands no more

Logo, how on earth does that post make me needy? 😂.
Oh, I forgot, you have left us. Consider it a rhetorical question
Posted 6/3/2019 10:43 PM (GMT 0)
I have to admit, this article sort of woke me up. It made me realize that yeah, I’ve become much less affectionate towards my wife. She seems not to mind, and she is aware of the loss of libido as a side effect, but who knows.
Something I should address.
I’m glad this article has sparked some seemingly useful conversation for others
Posted 6/4/2019 3:20 AM (GMT 0)
My wife was on hormonal therapy for seven years for breast cancer. It tore me up inside watching the personally changes even though she fought to stay who she was. When the steroid Dexasone
Was added that was it. The last year was tough for her. Now on Lupron I don’t have anyone close emotionally and frankly I’m fine with it. Sure hope that numbness goes away. Not for a relationship, just pull the dark curtain of emotional numbness.
Posted 6/4/2019 6:12 AM (GMT 0)

mentor5959 said...
"Now there is nothing. No hugs, no kisses, no hand holding, no touch. "
Do you lose your basic human emotion with this stuff? My God, I had no idea.
Can someone expand on this?????? I start this in 2 days.

My hubby is 8 months into Lupron. I came to this Forum asking for advice on what to expect and when. I kept asking hubby " how are you?" Answer was always FINE. The spot on advice here was to quit asking! Your mileage may vary.

So far side effects have been hot flashes, hourly. Still he does not complain as they last only seconds. At first they were keeping him awake each hour, but now he sleeps 3 hours wakes up with a flash and goes right back to sleep. He keeps the bedroom much cooler than I like so I throw an extra blanket on my side. He has lost some body hair but comments that it is much easier to apply deodorant underarms. With a diagnosis of prostate cancer we have have had conversations about priorities. We cuddle. We hold hands. He cries more at sad movies ( like me) We have not lost any human emotion in my opinion.
I appreciate the information gained on this forum about Lupron ( Thank you Trail Guy) My advice to you Mentor is to stay positive but stay informed. I ask the medical staff better questions as a result of information gleaned here.
Hubby completed # 20 of 44 radiation treatments today. So far zero side effects!
I will soon update my profile but we are 70 with lots of life left to live!
Posted 6/4/2019 6:38 PM (GMT 0)
Yeah that's a good article. I don't feel like my husband himself or we as a couple tolerated ADT very well. I also felt kind of angry that such a radical treatment didn't warrant some mental health care benefit as a part of his treatment (especially due to the risk of depression with the extreme hormonal changes), but it didn't.
Posted 6/4/2019 8:44 PM (GMT 0)

WifeofPie said...
Yeah that's a good article. I also felt kind of angry that such a radical treatment didn't warrant some mental health care benefit as a part of his treatment (especially due to the risk of depression with the extreme hormonal changes), but it didn't.


It hit me REALLY hard. I was going crazy. My wife was baffled. I begged my RO for anything that might help, and he shrugged it off. My depression seemed to last forever, and I'd never had any mental health issues before. Reading about it was helpful, but thinking back about going thru that now is PAINFUL.
Posted 6/4/2019 9:20 PM (GMT 0)
RobLee I think my husband was pretty floored by that feeling too. I suppose you could say he was fortunate to not have any history of depression prior to the Lupron, but it's one thing to see "depression" on a list of possible side effects and quite another to experience it...and while I'm no expert in mental health, it seems that when someone finds themselves in the weeds of depression, it's not simple to "get help". It's looking for a therapist, finding the right one, budgeting the cost, interviewing them, dragging your depressed self to the appointments, etc...those tasks are a lot for someone who's already in the weeds. I think this is handled pretty darn poorly by our medical system.
Posted 6/5/2019 1:37 AM (GMT 0)
Good article Prato - thank you for posting. As someone else already said, this article should be provided by docs prior to ADT to help couples prepare for what's to come. I did a good bit of research prior and shared with my husband, so we were relatively prepared. Nonetheless, when the side effects do set in it's still a shock. The complete loss of libido for my husband has been the most stressful for him. We still hold hands, snuggle, and I make sure to initiate hugs several times a day. It is a *****, but if it keeps the monster at bay, we're good with that and the option to keep living life together.
Posted 6/5/2019 2:13 AM (GMT 0)
Nytingale, your last sentence says it all. As tough as ADT is, it’s worth the trouble and there are ways to manage it
Posted 6/5/2019 5:49 PM (GMT 0)
I liked the article so much that I forwarded the link to my wife that same day. We had been thru much of that already, but it helped reinforce much of what I'd already been telling her for several years. And fortunately she is very accomodating.

Recently there was a "letter to the woman I love" posted on prostatecancer.net which I felt was too much "over the top" for my personal situation. (https://prostatecancer.net/living/woman-i-love/)... In it the author is apologizing to his wife for getting sick and essentially abandoning her as the result of his prostate cancer.

The contrast between this letter and the article in Prato's OP is striking. In my situation, matters were dramatically complicated when my wife was diagnosed with lymphoma just a few months after my prostatectomy, and went thru chemo at the same time that I was supposed to be having radiation.

The emotions I went thru being "upstaged" by her cancer helped to push this already depressed man even deeper into the pit. Unfortunately there is no concise way to tell the tale here, but let's just say the Lupron only made matters worse.

The good news is that she has been in remission for two years now, and I said goodbye to my psychiatrist last week. If and when my testosterone might return is the big question now, and if it does, will the PSA return also. The story continues...
Posted 6/5/2019 8:03 PM (GMT 0)
RobLee,

"... If and when my testosterone might return is the big question now, and if it does, will the PSA return also. "
I'm not sure if this were rhetorical questions or not, so......
Your testosterone should recover once you get off of ADT(Lupron). It took mine close to a year to start going back up.
But if you have an advanced case, once your T level goes up, likely so will your PSA.
You've had your Prostate removed, hopefully your PSA won't ever rise. But if it does, unfortunately it likely means PCa is back.
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