My thoughts and feelings this wasn't written to get sympathy or to guilt. Just my honest thoughts in the best words I have.
After 15 months of Lupron indering the hot flashes, nonexsitant sex drive lack of energy and derteration of my muscle mass. I'm left with crappy skin sagging neck. I don't look or feel like I'm the same man. I know I have an infinity of things to live for, but its hard not to get depressed. I push past it trying to silence my intervoice asking me if all this is worth it. I will be on hormone blockers until my last days I won't ever get my muscles back I will.never have my intervoice distracting me tuning my thoughts to sexual desire. All of that is gone. No one understands how difficult it is to accept that, if you haven't walked in these shoes. I'm for ever grateful for those who have loved me cared for me those who have taught me. I'm thankful for my children the love and forgiveness, and all the lessons they taught me about love and life. I'm forever grateful for my mother, grandmother,grandfather all my family and friends for loving me. They taught me the skillsI I needed to survive these nearly 62 yrs. I've been blessed with far more than I deserve. I still find it hard to accept the effects of this treatment, I know I that anything else would be selfish and weak. So here I go one foot in front of the other and grateful for all.
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Geminidizz
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I doubt that ED drugs would work. It would just be another disappointment. When I was on Lupron for a year or more I had absolutely no libido at all. It was "interesting" how that entire part of what I thought was my very basic self was completely gone. I still appreciated looking at all the beautiful men but had no interest in jumping their bones. The good side was how much more I could get done without the distraction of sex.
Loss is a hard, hard thing,and people who haven't gone through it (I don't care what kind--a death, a loss like yours, a bad divorce, a physical handicap, a betrayal) often don't get it. The loss can be permanent but you're supposed to "get over it". And some people do more than others. But it's always there.
It is a rough toad to travel. You still have choices to make. How this journey effects what you do in this life is probably the hardest choice to make.
Try getting involved in something. After getting fired for my cancer, I volunteered at a local oncology center. By traveling the road which I had traveled, I was able to relate to those getting treatments. Listening to their stories helped me a lot. Sharing my story also really help. Helping others always gets me into a much better mood.
Try this for awhile and see how it goes. This self-isolation doesn't help either. Try to find something to take your mind off of your loss. You're in the mourning stage right now. Keep an eye on how deep the depression goes. I was at the same place in time as you are when it hit me real bad. I wound up in a very bad, dark place. Medications can really help with this. I was on generic Zoloft for about a year. This really helped a lot.
I get it - man do I get it. It is a different kind of hell than I have ever experienced before - and I have experienced my share of change and loss. Never in my wildest imagination did anything like this come to mind.
This has given me a whole new understanding/compassion for others with prostate cancer. Also, being on Lupron myself, a whole new understanding/compassion for what women go through with menopause - which on this med is pretty much constant for the past 3 years.
Here is something I learned that has helped - somewhat - that I try to remember at low points - and high points, like driving through southern France, or being on the beach in Ixtapa Mexico, or even working with " life " in my garden
Nora McInerney Ted talk on Moving Forward That's the concept - not moving on, but moving forward
I know this is cliche, but I really do feel your pain. I am so envious of the men here who say, "ADT? What's the big deal? I didn't have any side effects." Like you, I found the side effects of Lupron, and the resulting low T, devastating. I am a poster child for side effects: hot flashes, non-existent sex drive, joint pain, screwed up blood work, wt gain, loss of muscle mass, higher BP, genital atrophy (and, yes, used a pump to try to mitigate the "damage"), swollen ankles, cognitive fuzzy/haze/lack of concentration, and so on.
Oh, and I forgot the "best" part: the emotional roller coaster ride that included feelings of despair, loss, grief, depression, and suicidal thoughts. Docs were pretty useless/not attentive to emotional aspect of ADT. In time, I realized that I was feeling a profound sense of loss and grief. But, what had I lost? My life was turned upside down - in a matter of weeks, I went from a fairly sexually active (3-4 times a wk) and ok looking "senior" to being a shell - a fat shell - of my former self. I dieted. I exercised 5+times/wk (machines, elliptical, walks). Btw, the exercise was the ONLY thing that seemed to help me emotionally (still overweight though. Sigh. One doc said, "this may be your new normal." Swell, doc). So, I hear you, Geminidizz. It can be a very rough ride and, yes, you're still on this side of the Earth but everything is different; Lupron/low T can have a profound effect. Depression and despair are common side effects but sometimes it's really difficult to see that it's the drug and resulting low T that are causing this. I just kept telling myself, "it's the drug, it's the drug. It WILL pass." Whew.
As you are painfully aware, ADT/low T can also affect one's sleep. I "discovered" medical marijuana (legal in MD) - fruit flavored gummies - and it's been an enormous help in taking the edge off, as it were, and helping me sleep through the night.
AND, for whatever it's worth, docs told me that it would take 6-9 mos for most side effects to improve. My last injection - 3 mo duration - was in May 2019. Twelve months later, PSA .1; T roaring back - LOL - (from 70 in Feb to 107 in May 2020). As the T has returned, I am feeling less unstable, less fuzzy cognitively, less depression...so, all good there. But, the impact remains a real bummer. Yeah, I'll stop whining and learn to deal. It takes time.
I had the huge weight gain at the beginning as well. Luckily my therapist is experienced in weight loss, so following his advice I've been able to loose 30 pounds in the past two years despite the Lupron. And without a huge effort. I set a modest goal of loosing about a pound a month and got one of those new scales with an app on my phone -- it is a great morale boost to see that line steadily head down over time.
First, my therapist recommended that I exercise regularly and second replace one meal with a Premier Protein drink (much more palatable to me than Boost or Ensure). And, of course, drink lots of water -- sometimes hunger is actually thirst. I had a kidney removed in 2015 so I try to drink 4 quart bottles a day, but I'm not a fanatic about it.
Also, on my own, I discovered almonds. I have stage 4 PC, metastasized to the bones, so I am on Xgeva and I have to struggle to keep my calcium levels up. Since the Lupron and Xtandi both elevate my cholesterol, good, wonderful cheese is out. So calcium gummies and lots of almonds -- and they are good for you, too. I snack on them all evening (feeding the munchies and throw in peanuts when they are on sale for variety, but almonds have the most calcium so they are my staple. I go through about a pound of almonds a week.
As in everything else, YMMV. I would suggest that, if you haven't already, find a therapist that can help with weight loss as well as living with PC.
D'oh! I also have made a change in my diet that has become so familiar that I forgot to mention it. I have, for the most part, eliminated carbs from my diet. I eat meat and vegetables (I love veggies!) for dinner. I have very little sugar (seems to bring on hot flashes) or potatoes or pasta.
However I am sane about this. When my sister's were visiting I made seafood pasta and ate every bit of it without a second thought. And when I make chicken soup I always include potatoes. Plus when I ate at a restaurant I ordered whatever looked good and ate the rolls! These exceptions to the rule make the carbs all the more delightful and my diet so easy to follow.
Hang in there Geminidizz. I well remember the feeling of being unmanned when all thoughts of sex were suddenly gone and my body just turned into a blob.
Therapy helped a lot and I would encourage you to find someone to help you deal with your feelings. They are valid and true and it helps to have someone to talk to about them.
I am 6 years into ADT and am told I'll live into my 80s (another 10 years) so look forward, hate the hot flashes, exercise and make plans for bucket list items! I took a trip to Europe in '18 and I'm planning on another when travel is back.
ADT may suck, but even if you don't cum it's still a blow job
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and throw in peanuts when they are on sale for variety, but almonds have the most calcium so they are my staple. I go through about a pound of almonds a week.
Penis Injection options: advice needed
Questions about hormone therapy...
New Member, 62 year old, with my on-going story
