First Lupron on Monday. Am I going to... - Advanced Prostate...

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First Lupron on Monday. Am I going to a funeral or a wedding!?

Lewellen profile image

While I wait out these last few days before my first Lupron injection, I'm having a lot of emotions; many at the same time. Not unlike my memories of getting married; or of burying a loved one.

But however I feel, Monday will happen and then Tuesday starts a new perspective on my life and love.

I'm curious about, and a little afraid of, the details of the medicine and the proceedure itself. But I'll get through it, and then I'll know what to expect for the next time in 3 months.

And I have my list of things that WILL happen to me, the things that might, and the ones that are unlikely to happen!

But none of that tells me how I'll FEEL about myself. What my body and emotions will feel like. No one has the gift of foresight, and everyone reacts uniquely anyway.

I sat down to write to you thinking I'd have questions for you. More info to help me not be so scared or sad. But I think I'm done with my questions. For now.

My job for the next few days is to take care of my emotional self and stay connected to my people. The medical plan is in other hands for a while. There will be more questions down the line as I adjust, but that doesn't start till next Tuesday.

So for the next few days I'll cry when I need to, but otherwise I'll do my best to sieze the day. Just like any other day.

Talk to you next week! And I'm so glad you are out there. You make a difference. Thank you.

68 Replies

Great plan for now! I love how you are in touch with how you are. The future will take care of itself in the future. The present is all we have.

reb77 profile image
reb77 in reply to Tall_Allen

Yesterday is history, tomorrow is a mystery, and today is a gift, that is why they call it the present.

Life is Good Keep a positive attitude and EXERCISE Daily the rest will be, what it will be.

You really capture the ruminations of the mind and put into words.Love it.

Thanks.

Greetings Lewellen,

You've come to the right place for information and camaraderie. Stick around we need you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/22/2022 7:36 PM DST

Welcome aboard. Sometimes thinking about the future is scarier than the future itself. You will survive and possibly thrive after Monday. Keep posting on this site and learn from those who’ve gone before. Like John says- you’re needed here.

maley2711 profile image
maley2711 in reply to Bvilkid

" Sometimes thinking about the future is scarier than the future itself. " wow...nail on head!!!!

Hi Lewellen, As the side effects of Lupron kick in the most important thing to remember is it works.

Lewellen profile image
Lewellen in reply to ARIES29

Ha! Yeah, that is the point after all 👍. Good reminder

Love this plan. I have a host of other frightening med issues and as a woman I have been on lupron . My dad went in five years ago . My friend's dad recently went on and was so unphased . .

If you can take five minutes to do this in my experience it has always helped me . Writing seems to be therapeutic for you too, so keep this in mind for this time or another. You said you don't know how you'll feel about yourself and it's the nature of messing with hormones that we tend to swing in those thoughts so my first suggestion is to write who you are proud to be and what you are proud about yourself for.. as an example I am grateful that I always find something to laugh at even in the worst moments. I've always been intelligent and even when I forget what I went into a room for I'm glad for intelligence that has and will laugh a lifetime... So grounding statements bc sure you will sometimes question your self and your emotions and it's important to set yourself up with grounding statements you can look at. Write these words feelings are bit facts and though I may but feel the same about myself daily it's a side effect of meds helping me live ny best life

Next , write ehst you want to happen as if it is happening in great detail . Write about your days and thoughts as if it's happening now and detail with positive thoughts regarding adaptation and the tiny joys in life. You must write this as if it is happening and include fine detail. Reread as often as possible and keep these thoughts . This energy in the universe .

I know with 26 years of painful illness, these methods help . Always suround yourself in white light . Regardless of religious beliefs we can't deny the power of energy which can neither be created nir destroyed

Your plan sounds perfect and wise. It is nice to meet you. I like the way you write healing laughter and love to Al my healings friends..

. Erica

Beautiful Erica, nicely written.

I especially like: "always find something to laugh at even in the worst moments."

and " energy is the universe ."

You have inspired me to create a new post about Gratitude ... coming soon.

Please please do weight training at least 3 times a week for an hour minimum. All muscle groups. Find a trainer and use him as much as you can afford. At least a couple of times to get started. Multiple reps with small weights to start. Guys here that do weight training on ADT will tell you they feel so much better. And it’s as good as any drug for longevity. IT is possible to avoid muscle loss which leads to weight gain and depression and fatigue.

Schwah

I took the shot a couple of weeks ago . That shot is defenitely not your funeral. Excercise is really good advice , as well as getting on with daily life , not projecting thedoubts of the future and encouragement from so knowledgeble,compasionate people with a sense of humor who post here , Thanks for sharing and expressing your thoughts with us.

Just had my 2nd Lupron. I've gone from high PSA, to 1.24. I have had several close calls, first was when they tried to internalize my nephrostomy tubes. Sepsis on the table, crash team called. Barely came through... Then, on the day my Lutesha 177 clinical trial was to begin, my oncologist came in, white as a ghost, said he was immediately admitting me, C-K of 6,000. Normal is 50-200. 5 days in the hospital, let out at 809 C-K. Test yesterday was 60, so ready for injections, next Friday.

So, lupron is mostly what I've had. And I'm feeling better, after all the other crap, than I have in 8 months.

Hang in there.. Every day, is another day. I'm 68, as my urologist that diagnosed me said, I should expect something. Went further to say, he had to give my metastatic cancer diagnosis, to a gent that is 49, later that afternoon. Puts it all in perspective

I'm just hoping that I live long enough, that my 4 year old granddaughter remembers me, not just photos of me. Three, four years would do that and with new treatment occurring monthly, I'm confident I will last a few years, yet

Lulu700 profile image
Lulu700 in reply to 9mmm

I too had the tubes . Then internal steps . Sorry that you had a rough go of it! That sounded very bad! 🙏✌️

Your perspective and attitude are great. Keep being grateful and talk about your feelings, the full range of them for sure.

Take heed on the exercise. A lot is not in your control. Exercise is far and away the most significant thing that is, and it makes all the difference.

My 2nd annual Lupron anniversary is August. For me, other than a few days of injection site soreness, I did not notice any side effects for the first two weeks. Yes, the hot flashes started, but what I was more concerned about was the disappearing libido. Something I thought was so important 2 weeks earlier vanished. I just did not care! All of a sudden I could relate with my post menopausal wife and 4 sister! It was a life changing revelation for me. I teased my oncologist of 31 years that he made me a more understanding husband! Best of Luck!

Tall_Allen and Scout4answers say it better than me but I have been on ADT for about 2 years but I try and exercise each day, notice my penis seems to be shrinking, suffer sometimes from fatigue and life can still be good so stay positive.

Schwah profile image
Schwah in reply to rosatt1

If you plan in a “vacation” from adt in the future, take viagra three times a week at night and try and get an erection. Morning wood often happens naturally. But if not work on it yourself. This will prevent shrinkage. Use it or lose it boysSchwah

rosatt1 profile image
rosatt1 in reply to Schwah

Thanks for the interest and advice. I had a PSA test today and will wait for the result.

It is possible that you enter a momentary depression but just learning you have cancer is enough to do that. But if you were not depressed already and you become depressed after the injection just remember that your hormones are out of whack from their usual state. This is not unlikely PMS that women go through. As such, keep faith that it should pass as you and your body adjust to your new normal. Best of luck to you.

No one can tell you how you're going to feel. Like Mr. Tall says, today is all you have. I think it took almost two years for me to feel any symptoms from Lupron at all; now the worst of it is fatigue. My oncologist prescribed Provigil, which works pretty well to keep me focused and energized in the afternoon.

Everyone is different; men here can tell you about a range of symptoms. You have one certainty: the cancer. Lupron is your friend and I hope it works well for you.

keys2life profile image
keys2life in reply to SteveTheJ

I too am on Nuvigil, very similar to Provigil. I recommend it highly! Helps put everything in perspective and keeps energy level up

It will take several weeks until you notice side effects. In my case it took eight or twelve weeks.

Years ago I had a Lupron vacation for about six months and felt like my old self again… it was great …I knew when I for my onc appt I would get the shot again I mourned fit my old self, kinda like you are… haven’t been off in the several years since…but have discovered weight training - especially legs- and that helps a lot- both mentally and physically- hang in there!!!!

58 yrs old… dx 2008… surgery /Lupron/Casodex…. Radiation in ‘19 to zap bone mets and now undetectable…

I think you can minimize side effects with exercise and weight lifting. The sexual side effects are not horrible for me. I could have sex if I wanted but I am just not that interested. Which I find very fascinating. I was very interested in sex before the Lupron. It is amazing how chemical the desire is. Fortunately my wife is OK with that.

I had one month shots because that is what BCBS would pay for. The shot procedure was no different than any other I had ever had. I did not feel any changes for about a month and the hot flashes started intensely. This was very quickly stopped with 20mg of Megace per day and did not bother me again. I was able to maintain muscle mass with weight training but did gain fat around the waist. Maybe some cardio would have helped 20/20. My T ultimately dropped to 7. I am now 6 months post stopping Lupron which I did for a year. T is 325 and climbing, PSA is zero. Always weary of what will happen next. Just the nature of the beast. Very best to you. It is rather tolerable.

Welcome to the club that none of us wants to belong to.

Some men seem to take ADT in stride and for whom its side effects are minimal. Others will tell you of the hell they went through and how ADT affected their quality of life in the short and long term.

Impossible to know how you will respond until you're "there," but the concern/anxiety/fear you're expressing is something many of us experienced. The "what ifs" can be scary as hell.

It seems that most here will tell you: you life is going to change big time; the importance of taking care of yourself physically, mentally/emotionally and, for some, spiritually is critical; making sure your docs listen and respond to your reactions to ADT - there ARE meds that can help you feel better; and have some kind of support - someone(s) who will listen to you. You're not alone.

A few random thoughts: exercise seems to be the one thing that helps. Get a trainer and design a routine that is best for you (combo of weights, walking/running, etc.). And, even though there will be days when you're not going to want to get out of bed, force yourself to get to the gym. Get a diet from your doc. It'll help you manage wt gain and muscle tone and feel in control as you go through this. Feeling in control is critical as your chemistry changes.

For many, their bodies changed - for some, dramatically: weight gain is common; genital shrinkage is possible (a penis pump can help); interest in sex will fall to zero (obvious impact upon intimacy); joint pain may occur; fatigue can be crushing; hot flashes can be frequent and annoying as hell; and so on. Emotionally, you may find yourself on a roller coaster with many thoughts/feelings you didn't even know you had. Depression is also common as T decreases. Crying spells, often for no apparent reason, are also a complaint of many.

You WILL get through this. Keeping as positive attitude as you can is important in dealing with this. And, the tone of your post suggests that you're approaching this with a questioning and positive attitude. Good for you!

Might I suggest: "Androgen Deprivation Therapy: A Guide for Prostate Cancer Patients and Their Loved Ones"? Easy to read, filled with explanations of "what's happening to me?" and suggestions for how to cope with ADT side effects. Worth a read.

Good luck to you. Keep us posted.

EdinBaltimore

Yes, sounds like you’re in the right place.

You’ve got this!

Best of luck! I suspect you'll do fine.

My urologist, I hadn't seen my MO yet. Took about a month to get it ordered after diagnosis. It was this board that directed me most, but the fact I was finally doing something to combat the disease was a great relief and made me feel like I was able to fight back against something I have limited control over.

We so need each other, It is so true

It seems scary and my emotions were very similar, but now after 2 years and Lupron every 4 months, I'm alive, working full time, and all my bloodwork is wonderful with no spread from the metastases in the belly. These are the days that must happen to us

Lulu700 profile image
Lulu700 in reply to Hailwood

Hailwood Yah! Keep rolling! 🤙🏽💪

The key for me, trusting God and His promises. Faith trumps fear.

Lulu700 profile image
Lulu700 in reply to GummyToad

Praise God ! 🙏🕊

After being on it for over 4 years, lupron/eligard it has done its job. Desire for sex has gone which do not miss, hot flashes is a part of life now and the intense emotions like certain things brings tears is now a part of me, there are worse things. I call it the women's curse or the get even time to know what they go through. Exercise is important, the hip is sore for a day or two but you get used to that and if you use eligard the shot in the stomach area is not bad at all. The effects of the lupron is better than progression of the disease or worse death. Keep on this site, lots of information from good minds like tall allen among others, adopt the slogan I have, never give in and never give up, good luck and God bless on this journey.

I will begin my journey with ADT treatments in the next couple of weeks. I was diagnosed in 2014, Gleason 8, PSA 5.26, 52 years old. I had surgery and salvage radiation in 2014 and 2015 respectively. My PSA never went down below .06. In 2018 I participated in PSMA/ CT Scan clinical trial which revealed metastasis in lower back at the microscopic stage, my PSA was .50 . Since 2014 I have chosen not to go on ADT due to anticipated side effects. QOL issues, the unknown and length of time to castration resistance . In November of 2020 with PSA at 2.0, PSMA scan revealed one lesion on Sacrum bone. The lesion was radiated Dec21/Jan22 (Caught COVID during treatment) The radiation had no impact on PSA. Follow up PSA March 2022 revealed PSA had risen to 3.1. Follow up PSA in June 2022 revealed PSA at 10.3. Auxmin scan June 2022 revealed metastasis to S-1, S-2, L-2, T-5 and left occipital bone. Needless to say this was a gut punch similar to when I was first diagnosed. After processing the info for a couple of days. I gave thanks, for the past eight years I’ve gone without ADT. I’m thankful for the advances in treatment today which were not available eight years ago. I’ll strive not to be anxious, I’ll

take and enjoy one day at a time. I can do this and I pray You can too. Best wishes.

Sorry to hear of your progression, be strong

Lulu700 profile image
Lulu700 in reply to Gpatwice

8 yrs no adt ? Bravo to that!

Lupron's a bitch, and then you live.

You really do express complicated thoughts/emotions well.I realize some, maybe many, maybe most, people on Lupron have scary or bothersome side effects. But not all. I don't think you should overthink this. Just see what happens.

I've been on it for seven months and have never had noticeable problems.

I went for my first infusion expecting nothing out of the ordinary, and rarely thought about it. I had a few mild nighttime hot flashes and that's it. No pain at injection site.

Recently, I have noticed weakness and pain in legs and feet when walking more than 100 yards. That may be from Lupron or Zytiga or neurapathy, or arthritis, or some of each. I do some mild exercises, but need to ramp that up.

The main thing, I think, is to not worry about possible problems and deal with real ones with a positive attitude and prayer.

And be thankful we have so many current and developing options.

It's just like both of those, it's no picnic, but it's not terrible.

When I started Lupron, I was also highly depressed. Taking with a counsellor had really helped me, as I worked through the feelings that I have had since submitting to RARP and ADT.

I'm highly emotional - the ADT removes ask the brakes from my emotional rollercoaster, so small things can set me off. But it's had been getting better, and ask my indications are that it will continue to get better.

Lulu700 profile image
Lulu700 in reply to chickgreen

Better is good , chickgreen! I flipped out more than occasionally on double adt …. I was high strung prior to pc . What a way to see the golden years . ? I’m just lucky to be here ! 😳

chickgreen profile image
chickgreen in reply to Lulu700

Sorry I didn;t see your reply earlier - My oncologist has asked my to limit my screen time with respect to prostate cancer: My mental health has been much improved as a result!

Hey Lewellen . I disliked lupron so much that I opted to chop the boys allowing me to drop the shots for life . No shots since 2017 , I’m taking Tak -700 stopping adrenal production of t? Hang in there guy! We do what e must to survive. With this ! 😳✌️

Vangogh1961 profile image
Vangogh1961 in reply to Lulu700

I made the same decision two months ago. I opted for the orch, since my MO said ADT for life. I still am on Zytiga, but figure without Lupron it's one less chemical I'm taking.

Lulu700 profile image
Lulu700 in reply to Vangogh1961

It is the one proactive choice that I made to fight off pc . Shut the factory down . No t however is my great problem . No pc ? 💪🤙🏽

It's a waste of time trying to analyze ADT like some sort of philosophical question. ADT is a bitch. Prostate cancer is a bitch. Unfortunately, there's not much alternative to these treatments except for giving up, so we just have to soldier through these times and hope for a better future.

The morning of my first Lupron shot, the beginning of my primary therapy for G9 prostate cancer, I was unable to get myself off the couch to go to the appointment. It was like I was paralyzed, just sitting, looking at the wall. Somehow in that moment, it all became Real.

It took me 45 minutes to muster enough gumption to get up and go for the shot! It was just so much unknown, and such a HUGE change for me. At 55, I was not ready for it, though I suppose one never is.

And the reality, the near-finality of it, was jarring. Prior to PCa, I didn't even know that "ADT" (as we like to call it) was a thing. But it was The Plan, and so down the rabbit hole I went.

There are many people here to help, to provide support, as you embark on this. Stay in touch! It's not a funeral, but it's not a wedding either. :)

Wedding, Funeral.... they're both the same........

Good Luck, Good Health and Good Humor

j-o-h-n Friday 06/24/2022 11:38 AM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Damn. You stole my reply. Again. I was going to ask Scott, How are they hanging? Windshield mirror?

j-o-h-n profile image
j-o-h-n in reply to monte1111

Waxed Hood Ornament...

Good Luck, Good Health and Good Humor

j-o-h-n Friday 06/24/2022 6:10 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Would make great earrings.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Gold plated pocket watch key fobs............

Good Luck, Good Health and Good Humor

j-o-h-n Saturday 06/25/2022 12:04 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Of course, one of the earrings hangs lower than the other one.

j-o-h-n profile image
j-o-h-n in reply to monte1111

They better, or he's gonna have a problem sitting down.....

Cuff links?

Good Luck, Good Health and Good Humor

j-o-h-n Saturday 06/25/2022 4:59 PM DST

Lulu700 profile image
Lulu700 in reply to monte1111

A pointless question . No nuts 5 yrs . 😳

Lulu700 profile image
Lulu700 in reply to j-o-h-n

😂😂👏👏👏😳

Some great comments here. What a terrifically supportive community.

Another thing to consider is that 3 months' ADT is a piece of cake. By the time you start to feel rotten (if that happens), you'll be able to look forward to feeling better again very soon.

Something to consider is Orgovyx vs. Lupron. Your T will recover in a matter of a couple of weeks, as opposed to several months, and you will regard that as a true gift.

Best of luck.

Just had my fourth lupron shot today. A small pinch and a bit of anxiety a little melancholy for days gone past when Lupron was not part of the equation. But I feel good and give thanks for feeling healthy and energetic. Libido is suspect but I can still work up an erection and have intimate relations with my beautiful girlfriend. Will turn 67 on July 17 most of my better days are behind me but I am grateful to be alive and I live my life with so much more purpose than I did before. Feeling sorry for one's self or falling into depression will not help so look around take in the best of life and live your best life...

seems like that sounds like a Bob Dylan song

Blood on the Tracks album. My favorite of his followed by Planet Waves.

Lewellen, your post touched my heart this morning, and agree with Scout’s advise… keep exercising, keep moving. I have watched my husband for 6 months on Lupron. He is ok because he goes to work every day, out with the men installing fence. He has done this for the past 40 years, no time to stop now. He says he feels weaker but still tries to do as much as he can. True, it is not an easy drug, but it sure does work! Keep writing, let us all know how you are feeling❤️

This ain’t no party , this ain’t no disco , but my hope is that you will survive with good QOL ! 🙏✌️

Lewellen here🤠. Hi everyone, I'm home from my first Lupron injection! Calmly showed up, stuck my butt out, and done!

The Rubicon has been crossed. 🙂

I have lots of impressions and questions still to run by y'all but tonight I'm just grateful for all the help I got here that just didn't seem to be on the Medical folk's radar 😲.

I'll be back with more to post in a couple days 👍. Many thanks to all🙏

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